Y Laurie

ASAP Walk and Roll

2011-04-28T19:16:00.015-04:00

On June 18, 2011, I am organizing a walk for ASAP. ASAP is a non-profit, 501(c)(3) donor- supported organization founded in 1988 that provides funding for research, support for patients diagnosed with chiari and syringomyelia, yearly conferences, and many other resources for patients, and doctors. After my diagnoses ASAP was the first online resource I went to for help to look for answers in trying to understand my medical condition. Through the forums and medical literature I found a greater understanding of my medical condition than I received even from my doctors. Through ASAP I have attended two of the yearly conferences and met other people that have been diagnosed with chiari and syringomyelia. I have made friendships with other people that have been diagnosed with chiari and syringomyelia that has lasted since the day we met. These are some the reasons why I have chosen to organize a walk and raise funds for ASAP. I know the funds will be put to good use.

The medical conditions chiari and syringomyelia are devastating conditions to be diagnosed with. I have been to the conferences and sat next to people that because of their diagnoses the same diagnose my son and I have received these people cannot turn their heads to look at me. Some have had their complete cervical spine fused to their skull. So their head no longer rotates over their necks. I have sat with a mother from Florida in New York up at The Chiari Institute at Christmas time. Her 7 year old daughter was having brain surgery during Christmas break because it was the only time they could take time away from school and work and have babysitters for the other kids back at home in FL. This mother did not know anyone in NY. I reached out to them on the ASAP forums because I was going to be visiting my in-laws in New York for Christmas so I was able to visit the hospital and bring gifts and treats for the little girl.

With this condition being so misunderstood many patients that are diagnosed have to travel most of the time many states away to be seen by the chiari experts and then have surgery, brain or spine surgery, many states sometimes countries away from home. They then travel home after such a devastating surgery. That is exactly what I did. After my spinal cord surgery, after a week in the hospital it was an 8 hour drive home. I remember stopping at rest stops getting out with my neck collar, walker, and PJ's and getting some of the craziest looks. Then their are those like my 12 year old son Hunter, he has not had surgery yet. Hunter does have many bad days. He misses more days of school than I would like because of his back pain and headaches. Any day could be the day that could be the bad day that does not get better and could end up being the day that leads to surgery. And the surgeries are not a cure. That is something most people do not get. We do not have a cure. Our surgeries we have when our medications are no longer controlling symptoms are no longer keeping them manageable. The surgeries are band-aids. I was just with a neurosurgeon April 20th. One of our Chiari experts, he said it is time for me to have another surgery. Looks like my band-aid is falling off. I will post about that another day.

These are some of the reasons why it is so important for us to have this walk. We need people like you to support us. To walk and roll beside us, if you cannot walk with us on June 18th, 2011, please donate online. Below is the link to our online pages. From the links you can sign up to walk, sponsor a walker, donate, or just read all the information you need to know about the day of the walk. My email address is also listed on the page. Please email me with any questions.

Team Hunter

Team Laurie

Main Page Summerville Walk & Roll

Smile!

2010-07-07T18:19:00.012-04:00

It has been a long time since I have updated and a lot of stuff has happened during that time.

Hunter had a couple rough months. He had a return of all of his symptoms and a few new ones. During this time Hunter was seen by two neurosurgeons here in Charleston and he had many appointments with his primary doctor. Hunter was in the most pain I have ever seen him in, he was missing so much school that he was put on the home-bound program. He stopped going outside to play with the other boys in the neighborhood. I even had neighbors asking me why Hunter was not outside anymore. He went from being outside everyday on his bike to not having any interest in doing much of anything at all. During this time he also went through a major growth spurt. He went from looking like a boy to a young man in 6 weeks or so. Hunter is only 11 years old. My son Chase is 16 and his friends say Hunter looks the same age as him now. Hunter's symptoms have calmed down quite a bit now that he is through the growth spurt. He is back outside running around with the neighborhood kids and just being a kid himself. He is not sitting around complaining of his back pain. I hope for him this lasts a very long time.

As for me I am still having as my brother put it last week "the worst luck of anyone I know". This new round of problems started in May. I went for an appointment with Dr. Francomano in Baltimore. I had a great appointment with her and as always she gave me some great advice on how to manage my symptoms as well as my boys. During this appointment we talked about my children and her thoughts on if I should have any other children. She thought it would be best for me if I did not. She said neurologically for me it would not be a good idea. This was May 21st and our first discussion ever on the subject, I met her for the first time over 3 years ago.

A week or so after I got home from Baltimore I had a positive pregnancy test. I thought of this as some kind of miracle. We did nothing to change the way we handle family planning. I thought sometimes God makes these choices for us. I was worried about my health and the health of this baby but was very excited. I called my family doctor right away and quickly got off all of my medicine except the beta-blocker which I even decreased that by half. My family doctor, pain management doctor and neurologist were all excited for me. With my medical history I was sent to a high-risk OB. During my first ultrasound it seemed like something might be wrong. Here comes the part of me learning more than I ever wanted to know about failing pregnancies and truly one of the greatest losses of my life.

I am a mother of 3 children and every time I found out I was pregnant it ended in me having a baby, so I did not think this would be any different. I could see this future baby, and immediately started doing everything to take care of myself. Even though Dr. Francomano did not recommend that I get pregnant, we did talk about some things a woman with EDS should do during pregnancy like megadosing folic acid @4mg per day instead of 0.4mg. I was worried about the medicine so I wanted off quickly, I got off Opana in 10 days, and with my neurologists approval I stopped my Topamax the same day. I was so worried these medications could harm the baby but my doctors said not to worry about that. The pain management doctor said I had like a 1 in a billion chance of the medicines I was taking to do any harm. So I was convinced I would have a happy, healthy baby. I even pictured this as my little girl.

During that first OB appointment the pregnancy did not measure as far along as I should of been. The doctor was concerned I had something called a blighted ovum but said my dates might be off so even though at the time he was suspecting a failed pregnancy we went ahead and discussed my birth plan. This is one of the main reasons I am sharing this with my readers. Over the years since I was diagnosed I have been asked by women how the births of my boys were handled. I was not diagnosed with my medical conditions until after I had my boys, so even though after my second pregnancy I started to show some neurological problems my pregnancies were handled the same as any healthy woman. This one would be very different.

The OB doctor said he would not want me to labor at all, would not want me to push at all, would not want me to have an epidural, I was thinking "how do we get this baby out then?" He would want me to be put under general anesthesia and while I was in a deep sleep they would do a c-section. He was also very concerned about my cranial-cervical instability so I would need to be awake when I was intubated. Not anyone's ideal birth plan. I was scared of this but the idea of losing the pregnancy frightened me even more.

I went back the following week for another ultrasound and their was not much change from the week before on my measurements but the OB (a different OB) wanted to check my hormone levels to see if my levels were at the level to support a normal pregnancy. I got a call the next day that things looked good. My HCG was high, so they tested another hormone the progesterone and these levels looked good also. The doctor said the levels offered some hope so I was scheduled for another ultrasound 1 week later. The next appointment was when I got the worst news possible, something I had never even heard of.

The doctor at this appointment (different again) came in telling me she thought I had a molar pregnancy and I needed to go to be admitted in the hospital now! She then started talking about how I need an echo-cardiogram because of my medical history before I was scheduled for surgery. Then she started talking about chemotherapy. I was so confused. I said "Do I have cancer?" She told me a molar pregnancy can develop like a cancer and that the pregnancy needs to be terminated now! She said it can spread to my lungs and brain so those would need to be scanned. Thankfully when she called to the hospital they said I could schedule my appointment for the echo the next day and come in at a scheduled time to be admitted in the hospital. This gave me some time to come home and research molar pregnancies and what to expect. All of this was the worst news I felt like I had ever received but I did still have that echo scheduled and "when it rains it pours" for me so I was not done getting bad news.

After the echo I went to pre-op in the hospital and was told again by a doctor I had never met that I had an enlarged aortic root. I remembered from previous echos that it was normal. That again was devastating news. When I have heard of EDS'ers that have died it has been from aortic rupture, so I was left thinking is this a death sentence for me?

This has all been so emotionally devastating. I was put under general anesthesia for the "procedure" I remember them waking me up saying its all over. I remember just thinking the baby died and I was crying, I was all alone crying, then a nurse came in saying they were giving me something to calm me down. I wanted to feel, to feel the loss in that moment but even that was quickly taken away. I woke up later with Allen standing over me.

I just don't understand sometimes why I have to have such "bad luck" all of these things to make me stronger. I was thinking of this the other day thinking about how the strongest people have to carry the most weight. I just hope I don't crumble under all of it. So for now I will continue to be that "tough girl" my dad has always said I am and know I will get through this. And as always during the tough times and the tears I will get through it by putting on a smile.

Smile Lyrics
A tribute to Charlie Chaplin taken from the stage version of "Smile")
Words Written by John Turner and Geoffrey Parsons.
Music Composed by Charles Chaplin.
Produced by David Foster and Michael Jackson.
Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...
If you smile
With your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile if you'll just...
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you'll just...
Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...
If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you'll just Smile...
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you'll just Smile

ASAP Walk

2010-05-18T19:47:00.004-04:00

I just donated to the ASAP walk-a-thon that is being held in NJ next week since I will not be able to attend the walk. ASAP is the leading organization in the fight against Chiari and
syringomyelia. I am asking my friends to please get out their plastic and go to the link below to give what you can, even if it is only $5.00 for this medical condition that causes suffering in so many.

http://www.firstgiving.com/laschiari

Walks are also being held on May 22, 2010 in Richmond, VA and Greenfield (Indianapolis area), IN

Chiari Malfomation to be featured on House

2010-05-03T11:06:00.007-04:00

Below is a link to a newspaper article about a fellow Chiarian that shared her story with the producers at House/Fox network to help make the House Chiari episode possible. I have never met Laura Slyman the woman in the story but I feel like I do know her. I know her struggle with living with Chiari malformation. When meeting a fellow Chiarian our stories are always very similar and we always become instant friends, become somewhat of a second family. A family that truly understands when for years no one else has. I know the Chiarians that read my blog will be watching Fox tonight at 8/7c and encouraging every non-chiarian they know to do they same. I ask all of you non-chiarians to do just that, if you can't watch tonight, DVR the show or find it later on-line. Chiari is so misunderstood and receives so little awareness this is so very important to me and all of us in the Chiari community. I hope some of you watch and get a bit of understanding of what we Chiarians are living with, maybe even after watching will want to spread some awareness yourselves.

Link to Laura Slyman newspaper article
http://www.bellinghamherald.com/2010/05/02/1411067/bellingham-woman-shares-her-rare.html?storylink=addthis

Preview to tonight's show

Still Here

2010-01-24T15:58:00.016-05:00

I am still here, still staying busy with my boys, still going to more doctor appointments then any one person should ever have to endure.

I have been seeing doctors here in SC, 4 new doctors. 4 doctors that want to help me, doctors that send me off with script in hand to have more tests or scripts for new medications. I have found out some good news from some and others offer suggestions that just confuse me more.

I have been seen by a pain management doctor that during the first few minutes of meeting me said you do not look like the Ehlers Danlos patients I remember seeing in medical books. I thought to myself this guy might not work out. After listening to me describe my symptoms he also suggested I could benefit from having a spinal cord stimulator placed. As we went over more of my issues he said he would want to talk to my local neurosurgeon about my conditions before considering that option for me more. He said what he felt I needed was a break from the pain I am in. He did not feel the medications I had been prescribed for pain were strong enough to control my pain. We changed some of my medications and he said he wanted to look over the medical records that I had brought in that day of past test results and he was going to consult with the neurosurgeon I had been seen by here in Charleston.

During my next visits with the pain management doctor it was decided that I am not a good candidate for the spinal cord stimulator because of my syrinx and many of the other issues I have along my spine. My back hurts from top to bottom. He said the spinal cord stimulator would not help control the pain in all of these areas. We then talked about me having thoracic epidural injections at the areas I have herniated discs. I scheduled the appointment but it was after Jan. 1st. Since it was after the new year I would need to show up with the deductible and the cost my insurance would not be paying for this procedure. I will have new insurance Feb. 1st, I did not want to pay the deductible to one insurance company and then pay another in February. I have decided to wait, if anyone has any experience good or bad with these injections please let me know.

Even though during the first minutes of meeting my new pain management doctor and being unsure if he was going to be the right doctor for me he has turned out to be a doctor I look forward to helping me with the care of the many pain problems I have.

Out of all of the doctors I have seen here in Charleston my favorite has been an endocrinologist. During my first visit with him while I was describing my diagnosed conditions I said to him, "I am a mess". This is something I have said when I see the person I am telling my conditions to when I notice them to begin going cross-eyed. Believe me it happens quite often, I know it is a lot to take in. He told me he did not want me to think of myself that way. He reminded me that I still have my mind and that I have 3 children. He told me of some of his patients that were never able to have the blessing I have received. He said I know it is bad to have this condition you have been diagnosed with, I know you have a pain I could never imagine but you have been blessed in ways others would give everything they had in their life for.

This doctor during his exam of me felt my skin and said you have the soft, stretchy skin of an EDS patient, he then asked if he could examine my eyes. He then said you have the blue sclera of an EDS'er. Dr. Francomano the EDS specialist is the only other doctor that has commented on my blue sclera. As I talked to him more I knew this guy really knew what to look for in me.

I did have more blood drawn at my appointment with him then any other appointment I have ever had. He checked my adrenal function, checked me for celiac disease, and on and on. In the end the only thing that came back abnormal was my vitamin D levels. Something I have been told before. I am vitamin D deficient. He went on to say vitamin D is not really a vitamin but a hormone. He thought just as important as estrogen and testosterone. He said one of the reasons I feel so crummy. He said we as humans, were made to run around with no clothes on close to the equator but since we have all moved away from it we need to supplement greatly with vitamin D. He even said as an EDS patient you do not absorb vitamin D well so you need even more.

The endocrinologist also sent me for a bone density scan for my osteopenia. He even had my upper back scanned and the tech questioned it saying to me this is a test we do on women 65 and older. She left the room saying I am going to call his office and make sure this is the test he wanted done for you, and of course it was.

I am happy to say my bone density scan came back completely normal! The endocrinologist said he felt more than anything else I have done he felt staying active is what helped increase my bone density. He said the quickest way to loss bone mass is through inactivity. That inactivity I had before my surgery when I spent more time in bed then out of bed. Then after my surgery when my legs were weak for months. I know it is not possible for all of those with EDS/Chiari/POTS, and on and on, to get up and out of bed, but when you feel you can please make that effort. It can/does help.

As for my syrinx growing I have been told to have it re-scanned in 6 months. I was told having it scanned at different times during the day can make it seem larger or the place I had it scanned can make it seem larger, even the way it is cut during scanning can make it look larger.

In my last post I mentioned we had an appointment with Dr. Francomano in Baltimore in November. Her office called us a week before the appointment canceling on us. So we have not been to see her and we do not know if little Connor has EDS. I hope to find the time to get up there to see her with all of my boys during the summer months.

Hunter did have his appointment at The Chiari Institute in December. Again, some good news, some not so good. We found out Hunters syrinx has not gotten any bigger since his first appointment and might even be a bit smaller. I said to Hunter he is lucky to have a mom that takes everything he loves away for his health and that is why it has not grown. I was joking thinking again that I am funny. He did not see the humor in that. We were also told Hunter has what looks like a new issue, a arachnoid cyst in his brain. These arachnoid issues seem to be common in EDS patients. I had to have one removed during my tethered cord surgery. The doctor Hunter was seen by did not seem to think it was much of a concern now. But maybe later if Hunter would need decompression surgery. It is just something else to be dealt with. Hunter had a very long day during his appointments that day. We showed up at MDI at 7 am for imaging, then doctors at TCI. He was then sent back to MDI for more imaging. I am always so proud of him because he is so patient. He even sat through dinner with me with another chiari family that day. I did not hear any complaints at all from Hunter.

I am still as always trying to find ways to control my pain and issues without the use of medications. In November for my b-day my daddy sent me money for my present. I was planning on using the money to buy rocking chairs for our front porch. Here in Charleston you rarely see a porch without these rocking chairs. After further thought I decided to buy an inversion table instead. This is something the docs at TCI recommended in the past that I have inversion therapy as well as Hunter. Of course I love it! When we were away at Christmas I missed my inversion table and was looking forward to getting home to it. I bought the seated inversion table because the full inversion table would put too much stress on my EDS joints.

I have also found a few other things to be helpful, I will add links below:

Inversion Table

Vitamin D

tennis ball massage

Alexander Technique DVD

And, as always thank you for the emails and messages, I know I do not get back to everyone as I wish I would. I do read the emails and take your suggestions with me to the doctors and I always appreciate the support.

MRI Results

2009-10-29T17:19:00.009-04:00

I went to my appointment yesterday for an MRI of my thoracic spine. I had imaging done in New York for The Chiari Institute in August but due to a "scheduling mistake" my thoracic spine was not scanned. Dr. Insigna at TCI recommended that I have an MRI of my thoracic spine in my local area and send them the results since my syrinx ran along most of my spinal cord in my thoracic area. He wanted to have new images to compare with the last ones I had taken.

Some of you may remember that after my tethered cord surgery my syrinx had shrunk considerably. I was in hopes that it would be completely gone. I was not that lucky.

My syrinx is huge. It has at least doubled in width from the size it was before I had my surgery. Those of us with syringomyelia/syrinxes know that the width of the syrinx is what causes the most damage. Syringomyelia damages the spinal cord from the inside out.

Now I am wondering what has caused my syrinx to grow so large. Wondering if I'm re-tethered? I was told the tethering is what most likely caused my syrinx to begin with. After my tethered cord surgery it began to shrink so it seemed that was the cause. I am again very worried about this growing of my syrinx hoping the docs can tell me what is causing it. Worried that it will continue to grow and do more damage to my spinal cord. I have had an increase in my back pain, neuropathic pain, and a return of my urinary problems for months now. That is what took me back The Chiari Institute in August. Since August my symptoms have continued to worsen.

So I am wondering what it is going to take to stop this growth of my syrinx. Wondering what damage it is doing to my spinal cord and just how much it may do in the future. Wondering will I need another surgery, surgery that I never want to go through again.

Doctors, Doctors, and More Doctors

2009-10-27T23:39:00.023-04:00

Wondering, will it ever end? I was thinking tonight that it has been a little more than 3 years since I was first diagnosed with syringomyelia and started this nightmare for myself and my boys. Since that time I have learned more than I ever wanted to know about the anatomy of the body. Before my diagnoses began I did not know to call the 2nd vertebrate in my neck an adontiod and had know clue it could be retro-flexed and push into my brain stem and be one of the reasons to cause me to lose my life as I knew it. 3 years and after all of my diagnoses and doctors appointments I can't say I am that much better now then I was when all of this began.

Tomorrow morning at 6:45 am. I have yet another appointment for an MRI. I have also been scheduled appointments with 5 different doctors in the Charleston area, doctors I need to see just to try to help me control the symptoms I have just so I can get through my day.

My boys and I have an appointment in Baltimore next month November 20th with Dr. Francomano for our yearly follow-up. This year since Connor has reached the ripe old age of 4 he will be having his first appointment with Dr. F to be tested for Ehlers-Danlos Syndrome. Connor has been having some problems lately that Allen and I are becoming very concerned about. Hunter has his yearly follow-up at The Chiari Institute December 18th. He will again have a morning of imaging and appointments with the docs at TCI. Hunter is also complaining a bit more lately and missing days from school. One of the reasons I am suspecting an increase in Hunter's symptoms is because of a new activity he is doing here in SC. He LOVES it! and has made many friends in the neighborhood with boys his own age he enjoys the activity with. Now I am afraid I will have to tell him he can no longer participate. I know his health is the most important thing, but I do not want to take away any more activities he enjoys, activities that makes him feel normal, just one of the boys.

I have been seen by a neurosurgeon here in Charleston. He told me he would not recommend a fusion for me. He said if I am fused at the cranial-cervical junction with the degeneration I have in my spine by the time I am 50 I will need to have multiple fusions along my spine. He said even if I did not have osteopenia he would not consider fusion for me. His suggestion for me at this time is to have a spinal cord stimulator placed. I have been researching this option and it could help with my pain issues. I do have an appointment with a pain management doctor next week (on my birthday), I want to find out other options the pain doc may have for me and try them out before I think too much about the spinal cord stimulator.

I am again feeling very bummed out. I'm just ready for this to end. Ready to find this wellness I want for my boys and myself. I know some of this feeling so bummed out was brought on today because it is Hunter's 11th birthday. My wish today for my son today on his birthday was for him to have a pain free day. That does not happen when you have been diagnosed with Ehlers Danlos Syndrome, Chiari, cavernous angiomas, many other related conditions, and syringomyelia growing in your spinal cord.

Hunter did have a nice birthday and trust me I try not to ever let my boys see me upset about this stuff, the physical pain I cannot hide but I try to keep my spirits up around them. I woke up this morning to see Hunter off to school with birthday wishes. I took cupcakes to his class and we went out to a pirate themed restaurant, Queen Anne's Revenge Hunter chose for his birthday dinner, he ordered lobster tails (so grown up). After that we were off to Toys R Us so he could spend some birthday money. I am so proud of him and he did have a nice birthday. Now that he is in bed I am again worrying about his health, his future.

We did find out last week that Hunter has been accepted to go to the Chiari weekend at Victory Junction in NC. Victory Junction is a camp for children with chronic/serious medical conditions created by Kyle Petty and his wife Patti after the death of their son Adam Petty. I am thankful that Hunter has been accepted and now has this to look forward to but I do wish he never had any of these problems that make it possible for him to go.

I wish Hunter many more fun birthdays and I will continue my search on finding ways to hopefully be able to give him a pain free birthday.

A Big Thanks to Give Kids the World and IAAPA

2009-10-09T00:27:00.024-04:00

I mentioned in an earlier post that Hunter was given a World Passport during his Make-A-Wish trip from GKTW and IAAPA. We have been very busy over the past months visiting amusement parks and attractions along the East Coast.

Our first destination on the list was Hershey Park in Pennsylvania, and we recently visited two attractions in Orlando, Florida. In total we have visited 10 attractions on the list. We were able to visit attractions in Virginia, Maryland, New York, Pennsylvania, and our recent trip to Florida. Hunter's Make-A-Wish trip was last year from Nov. 1-7, the World Passport he was given is valid for one year from the date of his trip so he only has less than one month left on it. With the boys in school and the closest destination on his list 192 miles away I don't think we will be visiting anymore parks before his passport expires, but he did have a blast the past few months. I could never thank GKTW and IAAPA enough for the smiles this generous gift has brought to Hunter's face. I hear a picture is worth a thousand words, so I will add some pictures.

Our last visit to the two attractions on the list in Florida was unexpected for us. The day I posted my last post we found out Allen's grandmother passed away. She was living in Gainesville Florida with Allen's aunt, we knew we would be heading down right away with all of the kids. My boys were well behaved and so very respectful throughout the entire visitation, dinners, and funeral, we wanted to do a little something for them so we drove a little further south to Orlando to let them have a bit of fun. Honestly it was good for myself and Allen, especially Allen.

Allen's grandmother, Hui-Hua Yeh lived with his family in New York during most of his childhood. She was still living in his family home when he went away to college. She celebrated her 100th birthday in Feb. and Allen was there in FL to celebrate with his extended family. Connor was able to meet her for the first time in Nov. when we were in Florida for Hunter's Wish trip. We had planned during the middle of the Wish trip after days of Disney that Connor might need a break, so Allen and Connor drove up to Gainesville for the day. At the funeral Allen spoke about the time Connor spent with his Great-Grandmother, how even though they were 96 years apart they laughed and played together with a small toy frog that was in the house. Allen was the only one to speak English during the visitation when it was time for him to speak about his grandmother. Allen's dad, aunt, uncle, and cousins all spoke Mandarin, a language I can only pick up bits and pieces of when spoken around me but with the emotion in the room no translation was needed. When Allen's father, aunt, and uncle said the word "Mama" with the emotion in their voices and facial expressions I could see and feel the loss they were experiencing, even with their "mama" being 100 years old they were not ready to let her go. A quote from the movie Forrest Gump: "Momma always said dyin' was a part of life. I sure wish it wasn't."

Knowing that we would be traveling to Orlando I called Give Kids the World to ask if we could stop by and visit Hunter's wish star there in the House of Miracles. We were told when Hunter had his star hung during his Wish trip he could come by to visit and see his star anytime he was in the area. I thought we might need to schedule an appointment with a time to stop by. When I called the woman that I spoke to at GKTW said we were family now stop by anytime! I was thinking we would stop by for an hour or so, we ended up spending the entire day and most of the night there. We stayed until 9:15pm. They do mean it when they say you are family. We spent the day swimming, golfing, eating ice cream and more ice cream, having dinner, going to Mayor Clayton's birthday bash and much more. We spent more time hanging out there than we were able to during Hunter's wish trip. During the Wish trip we were so busy with the amusement parks. When we left after our day of fun for our hotel we were told to come back anytime.

We spent the next day at Ripley's Believe it or Not, Wonder Works, and Downtown Disney. We had dinner at the coolest restaurant ever, The T-Rex Cafe. They even have a Build A Dino, and Hunter and Connor both built dino friends to bring home.

Thanks again to Give Kids the World and IAAPA we were able to make many more unforgettable family memories because of this wonderful gift.

Please watch the video below to see the hope GKTW inspires.

Back Online

2009-09-23T20:33:00.008-04:00

So I am finally back online after our move to Charleston SC. I feel awful about leaving my last post up for so long without filling my readers in on what I found out at TCI. After getting back online I found many emails and messages from many concerned friends wanting to know how I am doing. With the way I described my return of symptoms in my last post I am guessing you knew I would be getting bad news at my appointment at TCI.

I was worried that my spinal cord had re-tethered but that is not what the docs at TCI thought.

Dr. Insigna:
He thought my symptoms were being caused by increased cranial-cervical instability and that the "falling sensation" I was having was more extreme light headedness and that a ligament had slipped in my neck which was causing my instability to worsen as well as the increase in neck pain due to my neck muscles having to compensate for the loose ligament. Dr. Insigna believed that my tail bone pain was coming from my change in posture over the last few months as my instability worsened. He had a couple of recommendations and his only course of treatment if those things were not helpful would be cranio-cervical fusion. He said "A fusion is like killing a fly with a sledgehammer, you'll kill the fly but it will leave a mess." He told me knowing that I have 3 sons to care for he would not want to do that to me.

Dr. Insigna's recommendations:
-A new Aspen Vista collar in order to help get the ligament back into position, only an hour or so a day to strengthen the ligament, any longer than that and I risk weakening my neck muscles. He recommended wearing the collar near the end of the day.
-Alexander technique to help with posture and positioning of the head, he cautioned however to be careful of some of the moves because of where I placed on the Beighton scale.
-Hydrate, hydrate, hydrate, he had the analogy that the brain is in a bucket of liquid and that when people get dehydrated the brain will sink, we need to keep it hydrated/ floating, if not the symptoms will get worse and those of us with EDS/Chiari/POTS know we want to avoid worsening symptoms.
-Find a D.O. in Charleston for Cranial Sacral Therapy and Myofascial release to help with my pain.
-No Topamax, even though it had helped me with my headaches when I was on it, it is not a long-term solution as it would exacerbate my osteopenia and that will be something I'll have to worry about as a woman anyway.

Dr. Shelat came in after Dr. Insigna, this is the first time I have been seen by the neurologist after the neurosurgeon (seemed so backwards). He came in and did my neuro exam, talked to me about my symptoms and we looked over my films. We talked about how busy I have been over the past months. He did say he wished Chiari people would learn not to do so much. That was hard for me to hear. Since the beginning of all of this I have been fighting to get better so I can get my life back. Doing less is not the way I see myself getting better.

So I found out from TCI that they don't have many more options for me so I am going to keep fighting, keep looking for other options. I am in a new city and with that will come new doctors, I hoping one of these new doctors will have that magic pill I'm looking for.

Heading back up to The Chiari Institute

2009-08-25T11:40:00.008-04:00

I'm heading back up to The Chiari Institute because some of my symptoms from before having the tethered cord surgery have returned. I first started to notice an increase in my symptoms after flying to Madison WI for the ASAP conference last month. I have also been experiencing many new symptoms. Since I had started feeling better than I had in years (look back to my June 12th post), I was trying hard just to ignore these symptoms and wishing them away.

One of my new symptoms is that sometimes I have felt like the ground was dropping out from under me, almost like my world had just been rocked. I had an appointment with my cardiologist a few days after the first time I felt this sensation. He did not have any answers for me as to why this was happening but he wanted to change my beta-blockers because I was feeling exhausted every second of the day. The change of the beta-blockers did give me more energy but I was still having the sensation of falling a few times a week and now many of my old symptoms were returning. I have had two urinary tract infections in the last month. The pain has returned and is back in full force. I have had a headache for weeks now and my neck and back hurt more than I remember from before. My lower back pain is the worst of it all. I feel nerve type pain in my tail bone when I shift position. I am also dizzy all the time, I get car sick when I am in a car, even if I am the one driving. Allen had to pull over to let me throw up on our way to a friends house over the weekend. It's getting bad!

I'm very depressed now that this is happening. I was feeling great for awhile. I have told myself maybe that happened to remind me what it felt like to be well before I got sick again so I would have something to keep me pushing forward, pushing forward to try to find that feeling of wellness again. I am thinking I really am at my lowest ever, I have always gotten "but you don't look sick" from people when I tell them of my illness. The past week and a half I have had more people than ever tell me "you don't look well Laurie".

So I have an appointment very early tomorrow morning for imaging of my brain and complete spine in Manhasset. Then I am going over to The Chiari Institute for an appointment with a neurologist then the neurosurgeon. I am hoping for answers, of course as to why I am feeling so bad but it is scary to think of the ways they might be able to help me. Medications that are offered to me rarely help at all, I would love to be given a pill that would make all of this go away. Surgery (neurosurgery) is something I never want to go through again. So I am hoping they see something, something, that is just a quick fix, but I know it will not be that easy.

Documentary on POTS coming soon from DINET

2009-08-10T11:31:00.004-04:00

Check out DINET.org

My new favorite tool - The Stick!

2009-08-06T21:23:00.010-04:00

While I was away at the ASAP conference this year my husband bought The Stick at a local running store thinking it'd be helpful for my muscle pain and stiffness. You use this to massage various parts of your body or have someone massage you with it. It's very good for your neck, back, and lower body. Allen has mentioned that some of the positions they say to use for self-massage are very difficult for him due to flexibility but us EDS'ers won't have any problem with that for example trying to massage his own shoulders causes him more pain than it relieves.

Last night when I was unable to fall asleep due to neck pain I used The Stick for a bit on the floor and it relieved enough pain that I was able to sleep.

The webpage below has a few details on how The Stick can help those with Fibromyalgia and trigger points:
http://www.thestick.com/how/Fibro.cfm

I'd recommend this for anyone suffering from muscle soreness as it's very easy to use and it's easy to travel with.

ASAP Conference 2009

2009-07-25T23:44:00.015-04:00

Here is a little summary of the ASAP Conference 2009. I'm only going to highlight a few items.

Wednesday, July 15
I flew into Madison, Wisconsin and after checking in at the hotel I went to the reception that ASAP was holding. There I saw some familiar faces from last years conference as well as making some new friends.

Thursday, July 16
This was dedicated more towards people that weren't as familiar with the difference conditions and to me seemed mostly like review. I'll summarize the presentations that had information new to me:

A Diagnostic Methodology for the Evaluation of Chiari I Malformation - Dr. Kula from The Chiari Institute:
-Out of 3,300 patients at TCI, 8% have been found to have connective tissue disorders.
-A case was presented where a woman with syringomyelia was able to shrink her syrinx by using the Alexander Technique, which is something used to correct posture and release tension through the body.

Sexual Dysfunction and Urological Problems - Dr. John V. Kryger
-I learned more about sexual dysfunction in men during this presentation than I had even known was possible, this presentation included a very large graphic slide show.
-There were many alternatives mentioned from medications and injections to penile implants.
-Point and shoot, parasympathetic which would be where you get it to point, sympathetic is where you get it to shoot.

I missed the rest of the afternoon sessions because I had a tour scheduled of the Frank Lloyd Wright home at Taliesin.

Friday, July 17
Occult Spinal Dysraphism and the Tethered Cord Syndrome - Dr. W. Jerry Oakes
-Currently many doctors believe the tethered cord surgery to be of low-risk but he thinks it is an overused and abused procedure.

Complex Chiari: To fuse or not to fuse - Dr. Arnold H. Menezes
-A very small percentage of patients actually need to undergo a fusion, this percentage typically has muscular/ligament instability.
-Fusions must be bone to bone, bone to metal will result in a failure eventually.
-If we've learned anything from the last few years it is that all fusions must have bone placement.

Question and Answer - Physician Panel
-Dr. Kula says that 80% of fusions patients have Vitamin D deficiency
-Dr. Menezes is of the opinion that the internet is the biggest enemy, this caused much outrage in the crowd because they believed the support they have gotten through the internet has been invaluable.
-Dr. McCarthy stated that scoliosis is often diagnosed before syringomyelia.
-Dr. Oakes said that if you want to recover like a child you should be treated when you are a child, and the more severe symptoms become the longer it takes to recover post-surgery.

Peer-to-Peer for Patients
-This part wasn't well broadcasted so that there were perhaps 20 people at this session and there was a caretaker session going on at the same time as well.
-This is where we give a short introduction of ourselves. One woman in particular who was newly diagnosed seemed to be misinformed by her current doctor which is not out of the ordinary. The advice that we gave her is that it's very important to see a specialist for the initial diagnosis and treatment plan even if it means traveling out of your area. Many doctors currently don't seem to have the latest information and they may mean well but are working off data that is at least 10-15 years old.

Saturday, July 18
-This morning was dedicated to the pediatric information and was especially hard for me because of Hunter's diagnosis and worrying about Connor and Chase. I worry if they have seen the best doctors if they are getting the correct treatment and if I'm just doing the best thing for them. During the questions and answers session I began to feel overwhelmed and had to leave. I went back to my room and cried because I was worried about my children and their future. At this point I took a nap and wasn't back downstairs until the banquet.

Banquet
-The banquet itself was fun because of the atmosphere and the people I had met, the food served by the hotel sucked. I won a few items in the raffle as well as getting some great deals in the silent auction. I got a beautiful Brighton bag and some other nice items.

I'm looking forward to next years conference which is going to be held in Austin, Texas. I hope to see some of you there!

Passport to Fun

2009-06-29T10:16:00.020-04:00

On the last day of Hunter's Make-A-Wish trip, he was given a World Passport from Give Kids The World and the IAAPA which entitles everyone who went on the wish trip with him a complimentary admission to over 300 amusement parks and attractions around the world. The World Passport is valid for one year after the wish trip. We are going to visit as many places as possible this summer and have already been to 3!!

We started two weekends ago with Hershey Park in PA, it was a chocolate lovers dream. Due to some of Hunter's medical conditions he isn't able to ride some roller coasters and rides. We were afraid he'd be disappointed, but he wasn't! We had a great time there especially at the Boardwalk area which had a bunch of water rides and play areas. His favorite ride was the Waverider.

This past weekend we went up to NYC for the Skyride, The Victorian Gardens in Central Park and some sightseeing. The Skyride is located inside the Empire State Building and is a flight simulator that tours NYC. The Victorian Gardens is a small amusement park located in Central Park, there were only a handful of rides and mostly geared towards younger kids but all the kids ended up having a good time. Gavin Rossdale was at the Victorian Gardens with his son. When I first saw him I knew he looked very familiar and Allen quickly agreed with me and snapped a picture. A little later on when I spoke to him, I asked why he looked so familiar he replied in a British accent "Cause I'm a singer." He was really nice for the few minutes we spoke, I didn't ask for a picture because he was with his son.

Later that day we were walking through Times Square and news about Michael Jackson was everywhere. Allen and I still can't believe that the King of Pop is gone. It was sad seeing the news of his passing being displayed on the big screen in Times Square.

The next night Allen and I went out to the Comedy Cellar in Greenwich Village and it was quite a night. While I was taking a picture of Allen in front of the Comedy Cellar, Ardie Fuqua offered to take a picture of us together. Dave Attell was one of the comedians performing and we were able to meet and get pictures with him later that night when we were just walking around the Village.
If you are ever in Greenwich Village you have to stop by this little place called The Creperie, I had the best dessert EVER there it was chocolate brownie something and I've had a lot of chocolate in my life. Allen recognized the place from being featured on the Food Network.

No trip to New York would be complete without a visit to the Chinese doctor, I haven't seen him since January and he did hurt me but in a good way. My neck and back feel better, even though it's painful during the treatment the lasting effects make it worth it. The video below is a few seconds of one part of a typical session. Listen for the moaning which at first really weirded me out but now I've become pretty accustomed to it.

This Thursday we are headed to Busch Gardens Williamsburg on our way to South Carolina to spend the 4th on the beach. At the rate we are going we'll have this list knocked out in no time.

Finally Getting Better!

2009-06-12T00:44:00.004-04:00

So the past couple months I have been feeling better then I can remember feeling in years. I cannot tell you it has been one thing that has made a difference, as most of you know I have tried many different things over the past couple of years to be able to avoid the fusion surgery. I do think it has been a combination of all of the things I have tried.

I think one of the most important things I have done is I have let myself heal. Days after my tethered cord surgery I had an increase in my POTS symptoms and was told by Dr. Bolognese I may need to come back in 6 weeks to have cranio-cervical fusion surgery. After hearing that all I wanted was to get out of that hospital, I had just had spinal cord surgery. I was not ready to have brain surgery, (the most frightening brain surgery I had ever heard of). So I did everything I was told to do to get out of that hospital.

Once I got home after TC surgery I did continue to have an increase in my POTS symptoms. I ended up back at The Chiari Institute 3 months after TC surgery and was told my next option was the fusion surgery, but again I was not ready. Not ready to lose mobility of my neck. Not ready to have part of my skull removed, not ready to have screws and rods placed that close to my brain. I felt like their had to be other options for me.

Shortly after that Hunter was diagnosed with these same medical conditions and I thought maybe it is time, time, to have the surgery so I can feel better and take care of my son. I went back to TCI for more tests and prepared myself for that frightening surgery. Then I was told you are a perfect candidate for this surgery but you have osteopenia so for now surgery for you is not possible. I was told take a year, build your bones so they can support the weight of the hardware of the fusion. Trust me, this was devastating for me. To be told by some of the top neurosurgeons in the world that you need this surgery, brain surgery, but we cannot do this for you right now because of complications was a hard blow! Now, though I realize it was a blessing. I know if I had that surgery I would be worse off, still recovering but never recovered.

Now 23 months since I had TC surgery, I can say I feel better. Better then before my surgery, but also better then I felt years before my surgery. One of the problems of having a TC is brainstem elongation. That does make those POTS symptoms worse. I knew those issues from the brainstem elongation were not going to disappear overnight. It had taken me 31 years for my symptoms to get as bad as they were, I needed to give it more time. More time and also hard work on my part. I wanted to get myself back, back so I could be around to take care of my 3 sons. My sons that need me to be strong. So I worked at it and I am as I said doing better, much better! The next option seems to me now is not another surgery, just more work on my part and it is hard but I do not think it is as hard a recovering from such a devastating surgery. Below I will add some things that have helped me.

1. Having time to recover from surgery. It took me 18 months after my TC surgery to start to notice that I was feeling better than before my surgery.

2. Acupuncture and massage. This helped tremendously with the pain in my neck and shoulders.

3. Getting off most of the medication I was prescribed over the past couple years. When I went into surgery I was taking 8 different medications on a daily basis. That is not including the ones I just took as needed. I am now only taking 2 medications daily. One is atenolol for those POTS symptoms that remain. The other is Cymbalta for the pain from the nerve damage I have in my spinal cord. As I said I am better, living a better more fulfilling life, but I am not pain free/symptom free, but I do hope I am on my way.

4. Getting stronger. Shortly after my surgery I had a physical therapist tell me to avoid the fusion I needed to get stronger, he said "strong like an ox". This was only 4 weeks after my surgery and at that time I was not ready. Walking up the stairs still hurt, even being upright made me dizzy, but what he said stayed with me. And for the past couple months I have been working on that. I am again working out with a kettlebell on a regular basis, something I truly enjoyed before I became really sick.

5. This is just a list of some other things that have helped me and seem to work to help with the fatigue, pain, and brain fog. Click on the items below for more information.

Foam Rolling
Theracane
Fish Oil
MBT shoes for walking
Nintendo DS Brain Age Games

One more thing is try to stay active. I know for some it is not possible or can be very painful, but try not to lose mobility. After my surgery I was given a form from my doctor for a handicapped sticker for my car. I never turned that form in. I felt like if I stopped walking those few extra steps it would make me worse. I was ready to feel better, that is why I showed up for surgery. I am just trying, everyday to get better, to do better than the day before. It is one step at a time, one day at a time. It has been a very long road for me, I don't know how long this feeling of getting better will last but I am going to enjoy everyday of it while it lasts!

The Liver and Gallbladder Miracle Cleanse by Andreas Moritz

2009-04-14T00:20:00.008-04:00

A couple months ago I was out with my friend Christiane, during our time together she told me she had something she wanted to share with me. Christiana is from Germany, we have been friends for a couple years now. When she said she had something to share I thought she was going to pull some chocolate out of her purse, if not chocolate something yummy! She always has the best sweets. But instead, she pulled out a book and as she did, she said this is kinda gross but I think you should try it.

So we looked through her book for a few minutes together. She told me how a friend of hers from Germany told her of the book. Christiane told me her husband and daughter had already started the cleanse. She was not able to leave the book with me because she and her other family members were using it. I told her I would go home and order the book online. The book took longer to arrive then I thought it would. Days later it still had not arrived so I started researching the cleanse online. I found tons of information from people that had done the cleanse and most those people had positive improvements in their health after the cleanse. I was ready to start the cleanse without even reading the entire book.

The book finally arrived and I started the cleanse. The first 6 days are easy, you drink lots of apple juice and avoid dairy products, meats, and processed foods. Something I could do for 6 days, with all I have been through I can do anything for 6 days. The day after those 6 days is not so much fun.

After that is one day of misery,(but it is only one day) one day of drinking Epsom salt which works as a laxative, drinking 1 half cup of olive oil mixed with fruit juice, lemon or grapefruit. I did wake up in the night and throw up that mixture. Lemon juice and olive oil coming up is one of the worst things I have ever tasted! It was not only that, I did find out during that night just what it was that made this cleanse so "gross". I cannot say to do this cleanse without letting you know I did pass hundreds of stones, (Yes, very gross)! But, the days after that though are the best I felt in years!

I have had this pain in my right side for years, when I say years I mean since I have been pregnant with Hunter. He is now 10 years old. I have had tests on my gallbladder during these years for these complaints of pain, way before my Chiari dx for pain in my upper right side. I was never actually diagnosed with anything wrong with my gallbladder/liver. Guess what? This pain is gone now after doing this cleanse. This pain I have felt for 10 plus years. Pain I did not think would ever go away. Pain I was told after my dx of everything these past 2 years was pain I would always have, I was told probably caused from herniated disks. This pain is gone, gone after this simple cleanse and one day of feeling"gross". I waited for a few weeks to post because I wanted to make sure this pain relief lasted. I felt a decrease in my pain almost immediately after the cleanse. The author of this book tells of his chronic heath conditions and how he has found a relief from his conditions from the cleanse.

I warn you this cleanse as my friend Christiane said is "gross". My night after drinking the Epsom salt/olive oil/lemon juice mixture, I thought to myself as it was coming up "I WILL NEVER DO THIS AGAIN!" but now I am ready to start my next cycle tomorrow. I feel better that I have in years, "10 plus years"!

Please order this book, read it, and take the time to do at least one flush, see how you feel. I do think it can help all of us, even those of us that have not been diagnosed with a chronic health conditions.

Link to The Liver and Gallbladder Miracle Cleanse by Andreas Moritz

Hunter Edwards Song of Love

2009-03-18T19:12:00.011-04:00

During Hunter's stay at Give Kids the World for his Make A Wish trip he was given a brochure with a profile sheet from the Songs of Love Foundation. Songs of Love is a nonprofit organization that creates personalized songs for children with chronic or life-threatening illness. These song of love are written and sung by talented singers and song writers free of charge to the families receiving them.

Through receiving this song for Hunter I have seen the "Medicine of Music". Hunter was home sick from school recently, he was curled up under a blanket on the sofa. I thought of his song and put it in the CD player in the living room. Hunter quickly came out from hiding with a big smile on his face. I started singing the lyrics to the song with Connor saying the ones he remembered. Hunter went from feeling upset because he could not escape his terrible headache to laughing and singing along with us to his Song of Love.

On the Songs of Love Foundation website you can download Hunter's Song of Love and ringtone for a small donation. Below is the link to the download page. Type in Hunter's last name (Edwards) and the number 17967 to download his song and support this wonderful organization.

Song and ringtone page here.

Song Of Love

Lyrics

Hunter Edwards

Riding Bikes All Day Long
Having Lunch With Allen and Mom
Then Playing Video Games
With Connor and Chase

Rocking Out Guitar Hero
Shoot Em Up On Halo
Playing Fable With Your Dad Joe
Look At All The Games You Know

Hunter Edwards You Are Such A Cool Guy
When You're Around, There's Nothing But Blue Skies
Hunter Edwards, Everybody Loves You
You're Amazing All The Things You Can Do

Going Outside To Play
Having Fun At The Lake
If Your Playing Football Games
Or If Your Surfing Waves

Waveboarding All Day Long
Watching Star Wars When You Get Home
You Had Such A Fun Day
And Your Family Wants To Say

Hunter Edwards, You Are Such A Cool Guy
When You're Around, There's Nothing But Blue Skies
Hunter Edwards, Everybody Loves You
You're Amazing All The Things You Can Do

Words, Music, and Vocals By Dustin Kirkendall

Thank you, Songs of Love and Dustin Kirkendall

Must watch video for those with CCI

2009-03-05T19:53:00.011-05:00

Techniques and Problems of Craniovertebral Fusion for Craniocervical Instability and Hindbrain Herniation

I received the link to the video below last week in an email from ASAP. This interview was filmed during the ASAP conference in July in Washington DC. I attended this conference and I had the pleasure of sitting in the crowd to hear Dr. Menezes speak. This brilliant doctor sat at a table at the hotel after the speakers were done for the day and answered questions for those at the conference that had any questions for him. During this time I sat down with Dr. Menezes and asked the few questions I had for him that he so kindly answered. Everyone knows that I am still doing what I can to avoid the fusion surgery, but if the time comes and I can no longer put off having the craniocervical fusion this is the doctor I hope to have do my surgery.

Click the link below to watch.
Dr. Menezes interview

Test Results

2009-02-21T02:11:00.006-05:00

I have received a few emails from some of the people that follow my blog asking how things turned out with the tests I had, I figured I should get on here and update my blog. I apologize for taking so long. I found out a few things from all of the blood that was drawn. I had high levels of EBV, the doctor told me this was common, even if I was exposed as a young child this could cause a high reading. I was also told my IGG and IGM, levels were high. These levels should be tested again in 4 weeks.

It took over a week to get this basic information. The infectious disease doctor I was seen by called me again on Tuesday of this week to tell me more test results were in, I tested positive for Coxsackie virus.

When the doctor said Coxsackie virus, I thought about hand, foot, mouth disease. I lived in Japan years ago and I remember an outbreak of this virus. I did not feel, based on my symptoms that I had this virus. The doctor told me their are different types of Coxsackie virus. She asked me if I have children, and then told me how I might have contacted this virus from one of my kids. She said kids can have the virus and not have any symptoms. Not my case at all! I was knocked down by this virus. I am feeling a bit better now. I think if I had more time to rest I would feel much more improvement, but I am running things around here alone now, so I don't have much time to rest.

Again, More Doctors, More Tests

2009-02-02T23:51:00.015-05:00

Sorry it has taken me so long to update again. We did make it to snowy, freezing, Chicago IL. Hunter's appointment was scheduled for 2:00 pm on January 20th. I received a phone call from the receptionist at Dr.Issam Awads office around 11:30 am that day, she was calling to tell me Dr. Awad was called to perform emergency surgery. She wanted to know if I could get to the office before 12:00, if not we would need to reschedule Hunter's appointment. Luckily, Hunter and I were only 15 minutes away from the office, we were on our way to play at Navy Pier and we were able to make it. I would have been very upset (but understanding) if they canceled his appointment. Our return flight to Virginia was scheduled early in the morning the following day, if we were not as close as we were I would of had to re-schedule our flight to change the appointment day.

Hunter's appointment with Dr. Awad was short. We were in the room with the doctor for no more than 20 minutes. During that 20 minutes he did answer the questions I had for him. I did think of a few more as soon as he left the room but he did give me an email address to send any questions I would have in the future before he left us. Dr. Awad wants Hunter to have more tests. He wants Hunter to have a Susceptibility Weighted Image MRI (SWI MRI). This is a new type of MRI that will pick up any other cavernous angiomas Hunter has. On the MRI's he has had they show that Hunter has 3 cavernous angiomas. Dr. Awad said the SWI MRI will pick up any and all cavernous angiomas Hunter has, he said the "baby ones". Dr. Awad also wants Hunter to have some genetic testing. He told me their are 3 types of cavernous angiomas, some types are more aggressive than others. With the testing we can find out which type Hunter has. Knowing the type he has will also benefit any other family members that may be diagnosed with cavernous angiomas. Dr. Awad also wants Hunter to be tested for the seizure episodes he had. He said we need to find out if Hunter is having epileptic seizures and have him treated if he is. He told me how seizures can be fatal, the seizures seem to be his main concern right now. He did not recommend Hunter have surgery at this time.

The appointment with Dr. Awad was short but he put my mind at ease when it comes to the cavernous angiomas. Dr. Awad said now that Hunter is his patient he will treat Hunter as if he is his son. I do believe that he meant that, even during such a quick appointment I got from him that he truly cares about his patients. He wants Hunter to have the SWI MRI and the images sent to him. After that he said he wants Hunter to have the SWI MRI every 12 months, sooner if he has an increase in symptoms. He said Hunter is in his system now so he will look over all imaging and if he sees any changes that need to be discussed he would have us fly to Chicago for an appointment. Again, we have been blessed to find and be seen by the best doctor in the country for his care of the cavernous angiomas.

After Hunter's appointment we got in the car and made our way over to play at Navy Pier. Hunter and I grabbed a bunch of leaflets on attractions in Chicago the day we arrived at the airport. I told Hunter we could visit one attraction of his choice. One of the leaflets were of the Fun House Maze at Navy Pier, he decided right away that was the place he wanted to go. We had a great time, although I did think in the first minute or so of entering the maze that we were going to have to find an exit and leave. The first maze, the maze of mirrors freaked Hunter out a bit and he told me he wanted out of there. I calmed him down and together we found our way out of the first room and he was fine. I admit it freaked me out a bit too. After the maze we spent a few hours walking around inside at Navy Pier. Hunter even walked with me through the Smith Museum of Stained Glass Windows without complaining of being bored. That would never happen if his brothers were with us.

We got back from Chicago on Wednesday afternoon the 22nd and were only home until Friday afternoon and left again to drive up to New York. We went up to New York to celebrate Chinese New Year with Allen's family. We stayed Friday-Tuesday in New York. Our days were full from morning till night. Allen's mom had a party, we went out to eat many times, we went to the Chinese New Year celebration in NYC Chinatown. I was exhausted after all of this and so ready to get home and relax a bit. Our holidays were finally over. When we got home and I was a bit more sleepy than usual, I thought to myself it was from the holidays and the travel, but even with rest I was feeling worse.

I woke up on Thursday morning to find little purple spots all over both of my feet. I was somewhat alarmed by this, so I called Allen at work and told him about the spots. He did not seem very concerned. (He said later he thought on the phone it was probably due to my POTS, my feel always look purple.) So I went about my day, I took Connor out shopping to buy a birthday present for a friends party he was invited to and we went out for lunch. During lunch I felt lightheaded, nauseous, and a bit feverish. I got home and Allen came home awhile later. I showed him my feet and I could see the concern in his look. He said he thought I should go to the doctor. It was after 5pm by then so I ended up going to the ER.

When I got to the ER the doctor said I had petechiae and with my other symptoms he wanted me to have some tests to rule out meningitis. So I spent the rest of the night having blood drawn, a spinal tap, CT, and many other tests. The spinal tap was horrible. The doctor had a tough time finding the space to insert the needle because of my laminectomy. He said he did not have a marker. This worried me of course because of my syrinx and Chiari. I was a mess during the spinal tap. I was sweating and shaking. After all of these tests nothing was found. I was sent home at 3:30 am and was told to follow up with my primary care doc in the morning. My PCP sent me off right away to another doctor.

First my PCP called around to a few infectious disease doctors until he found one that could fit me in on a Friday afternoon. Once I got there I became a human pin cushion again. The doctor suspects it is something viral. She was also concerned that I may have Rocky Mountain spotted fever, so she put me on a strong dose of antibiotics" just to be safe". She also found during my exam that I have an enlarged spleen, she had me feel my abdomen and I could actually feel it. Because of the enlarged spleen she told me to avoid rough play and contact sports. (Not really something I participate in anyway.) Over the weekend the petechiae rash got worse so I called the doc on Monday and went back in to be looked over. They stuck me a couple more times. All of my blood work is not back so I don't know what this is for sure yet. I have been tired and run down for weeks now. I had thought it was from the holidays and travel. I am hoping something is found that can be treated and I can get back to feeling my "new normal" that I was beginning to get somewhat used to.

Gathering Information

2009-01-05T22:45:00.010-05:00

I spent most of my day today on the phone with some of the doctors Hunter has been seen by during the past 16 months since my worst nightmare of finding out I passed my genetic conditions onto my son came true. I was on the phone because I need the reports of findings from the different doctors faxed to Chicago for his appointment there on Jan. 20th. I realized today when trying to figure out which offices that I needed to call and which reports needed to be sent, that Hunter has been seen by 14 different doctors in 16 months. So, I called the doctors offices then sat around the house waiting for return phone calls. Of course not everyone got back to me today. I think this may take awhile! I just hope everything gets faxed by Jan. 20th.

I also called today to make an appointment for Hunter to be seen by his primary care provider. Hunter needs to have another MRI done before his appointment with neurosurgeon, Dr, Issam Awad in Chicago even though he just had an MRI of his brain and complete spine less than one month ago on Dec. 16th. He needs to have a recent MRI with contrast because I have been told the contrast makes the cavernous angiomas "light up like Christmas tree lights". Hunter's last MRI with contrast was last year in January when he had his complete work-up at The Chiari Institute. So he needs to see his primary care physician to get the script for the MRI. I told Hunter today he has an appointment this week with his PCP and that he will have to lie still through another MRI before the week is over. He told me he does not want to go to anymore doctors appointments. This includes the appointment in Chicago. He even knows we will have a heated pool at the hotel and it will only be the two of us traveling.

After my last post and my mention of Hunter's appointment in Chicago I received a few emails from family and friends asking me to explain what the cavernous angiomas are and how serious they can be. I found a video on YouTube that was made by the Angioma Alliance explaining cavernous angiomas. I will add it below. I am also adding links to the side of my page with more information.

I have also been asked if their is a link between cavernous angiomas, Ehlers Danlos syndrome and Chiari. I have asked Dr. Bolognese and Dr. Shelat at The Chiari Institute, they both said no. Dr. B said Hunter was only the second patient he had seen with Chiari and cavernous angiomas. Dr. Shelat is new to The Chiari Institute but he does have a background in patients with cavernous angiomas, he said Hunter was the first he has seen with both. The geneticist we see in Baltimore, Dr. Francomano said the cavernous angiomas was one of the reasons she suspected Loey-Dietz syndrome in us. So I will continue to search for answers. If I find some I will pass the information on.

More Doctors, More Tests

2008-12-22T22:17:00.012-05:00

Wow! It has been awhile since I have sat down to update my blog. I wish, I could say that old saying "No news is good news" was true in my case of not updating.

Last week on Dec. 16Th, I drove Hunter back up to The Chiari Institute. His symptoms have been progressing since starting the new school year in Sept. His main complaint and the symptom that has become the most debilitating, is weakness and pain in his legs. This pain and weakness has made it difficult for Hunter to walk up the stairs in our house, he no longer wants to walk the few minutes to school,( that in the beginning of the school year he was very excited to be able to do on his own). Even during his Disney trip Hunter begged to sit down after the first day because his legs were "giving out". He ended up using a wheelchair during his Make A Wish trip because I knew that was the only way he would enjoy the rest of his trip.

During Hunter's recent visit to The Chiari Institute, Hunter was seen by the new neurologist Dr. Shelat. Dr. Shelat has been awarded the "Neurology Residents’ Award by the Angioma Alliance for work related to cavernous malformations". If you read back to my first post mentioning Hunter's medical conditions, I mention Hunter having seizure like episodes and I rushed him to the local hospital. After a CT scan, MRI, and MRA, he was diagnosed with cavernous malformations (cavernous angiomas). Dr. Shelat is concerned that Hunter's symptoms may be coming from the cavernous malformations not the Chiari, and other issues. Dr. Shelat recommended Hunter be seen by the leading expert in cavernous angiomas, neurosurgeon Dr. Issam Awad in Chicago IL.

I called the office of Dr.Issam Awad last week on Friday the 19th. Hunter will be seen in Chicago next month on Jan. 20Th. I talked to the receptionist on the phone. She is sending me a packet with all of the information I will need for our stay in the Chicago area. Like, The Chiari Institute, they see patients from all over the country. The packet will include information for local hotels, and other local info we will need.

With all of this going on with Hunter, I have felt like I have not had time to worry about my own medical issues. I just want to help my son, I have felt sometimes that my medical issues get in the way of taking care of him, so I have been ignoring them as much as possible. My husband Allen, said to me just a few weeks ago that he is worried about me because I have not been taking care of myself. After his comment I started thinking he was right, my symptoms are also progressing. So I made a few appointments myself.

I made an appointment with my cardiologist. I had been seeing him every 3 months since he diagnosed me with POTS, two years ago. I went to see him 2 weeks ago. He said it has been over 6 months since I have been to see him. After my exam and me telling him of my new symptoms he ordered a Holter monitor for me. I should have these results soon. Depending on what is shown he may change some of my medication. I have also been back to my pain management clinic and I am going to physical therapy again. I know keeping myself feeling as best as I can is the best way to really help Hunter, but with all of the appointments also come the enormous cost of the co-pays. The financial burden these medical conditions has caused to our family is unreal even to me.

So now during the holiday season, I have to worry about coming up with money for plane tickets, hotel fare, and car rental for Hunter's appointments in Chicago, 700 miles away from our home in 29 days! Hunter's health is the most important thing to me right now so I know we will find a way. We always do! But the cost of our medical care has become such a financial drain, and we have given up so much, sometimes I just don't think we can cut one more thing and live a fulfilling life.

Ehlers Danlos Syndrome on Mystery Diagnosis

2008-12-08T18:54:00.003-05:00

Lynn Sanders, a member of APF's Pain Community Advisory Council and
Power Over Pain Action Network leader, will be featured on the Discovery
Health Channel's "Mystery Diagnosis" on Monday, December 8th
at 10:00 p.m.(ET/PT), December 13th at 5 p.m.(ET/PT) and on December
20th at 9 p.m.(ET/PT). Lynn's story will be the second segment shown
during the program.

"Mystery Diagnosis" which examines real medical mysteries
through personal interviews and reenactments, will take you through
Lynn's life beginning at age 15 when she began to experience nagging
pains in her hands during swim practice until she was eventually
diagnosed with Hypermobility Ehlers-Danlos syndrome when she was 30
years old.

Hunter's Make A Wish Trip

2008-11-10T15:09:00.047-05:00

Hunter's wish trip began with a limo ride to the airport. We were picked up by Reliable Limo Sipping soda from a champagne glass

Hunter was invited into the cockpit of our airplane on a Southwest flight, he got to meet the pilot and sit at the controlsHunter was the first person on the plane. He was allowed to pick his seat, he was also the first person on the plane to be served a drink. He was the only one to get a full can of soda. It really was some of the small extras that made his trip special to him.

We were greeted at the airport in Orlando by a Give Kids the World volunteer, Hunter is holding the sign she had. After helping us with our bags she walked us to our rental van. She made sure we were ready to go with Connor's car seat installed before she left us.

All wish children that visit Give Kids the World leave a star behind in The Castle of Miracles, Hunter is writing his name on his star

A close-up view of Hunter's star

Stars of many wish children Hunter making his wish pillow at Give Kids the World

Hunter was chosen to go up on stage for Jedi Training Academy at Hollywood Studios. This was a highlight of his trip.In front of Star Tours with some souvenirs bought in the Star Tours store. Hunter built his own lightsaber, bought a robe, and a Star Wars t-shirt. For months before his trip he talked about shopping at Tatooine Traders the Star Wars store.

Riding in the cockpit of the monorail to Magic Kingdom, all of my boys were given a monorail co-pilots license.

Escorted by The Grinch to the Seuss Trolley at Islands of Adventure

The Grinch getting very impatient waiting for the elevator. This cracked Hunter up. The Grinch was kicking and punching the elevator. Inside of the elevator up he crossed his arms and tapped the floor with his foot. The Grinch pushed Hunter in his wheelchair to the front of the line. Hunter just loved this!

Meeting the band members from The Blue Man Group

Hunter was marked with a blue print from a Blue Man

Meeting one of the Blue Men

A private meeting with all of the Marvel Superheroes at Islands of Adventure

The dolphin trainer at Sea World called the dolphins over so Hunter could have a private moment with the dolphins

Feeding the dolphins

Horseback riding at Give Kids the World

Every Thursday is Christmas at Give Kids The WorldStar Wars toys from Santa

All the ice cream you can eat starting at 7:30 a.m. at Give Kids the World

Hunter as The Hulk at Islands of Adventure

The limo that brought us home

These are pictures of some of the highlights of Hunter's trip. I will add some of the other pictures of Hunter's trip after I have a chance to look through all of them. I took over 700 pictures. I will also write more about his experience at the parks, Give Kids the World, and The Make A Wish foundation. I just wanted to share some pictures from his trip with everyone that has been checking in looking for updates.

Happy Birthday Hunter!

2008-10-27T09:46:00.004-04:00

Today is Hunter's 10th birthday. Connor and I woke Hunter up this morning singing Happy Birthday to him. I began feeling a bit emotional as I was singing to him. I cannot believe he is now (as he keeps telling me) a decade old! It does not seem like it was that long ago that he was born at 8:55 a.m. on October 27th, 1998. This morning at 8:55 a.m. he was already off to school. I did sit down with his baby book at that time and I thought back to the day he was born. He was so small, only six pounds, my smallest baby. He amazed me then and he still amazes me now. He has been through a lot in his 10 years of life and he still remains so positive.

Tonight his wish coordinators from the Make A Wish Foundation are coming by to surprise him with cake, gifts, and other goodies. They are also bringing our tickets and all of the information we need for his Disney Wish trip. I think this will be his greatest birthday surprise ever.

On Saturday, Hunter had his birthday party here at our home. He had a Birthday/Halloween Costume Party. I am adding a slide show with some of the pictures taken at his party.

Happy 10th Birthday Hunter. I love you!

Countdown to Disney

2008-10-21T23:28:00.008-04:00

Some of you know that my son Hunter was approved for a wish from the Make A Wish Foundation. In 10 days we will be leaving for Hunter's Make A Wish trip to Disney World, Universal Studios and Sea World. We will be staying at the Give Kids The World resort.

I was first told that Hunter's medical conditions qualified him for a wish in January, all I needed to do was contact Make A Wish to start the referral process. It took me 4 months to contact them. I had always believed that wishes were only granted to children that were asking for this last special wish before dying. I felt like contacting them would mean I did not have hope for my son. Make A Wish grants wishes for children with life threatening medical conditions, conditions that are progressive. Hunter's medical conditions can be life threatening and they are progressive, he is going to continue to develop more problems as time goes on. He does have the best doctors in the country for treating his conditions and he is getting the best medical care.

During the months after Hunter's diagnoses I did began to notice some differences in his personality. He was very moody at times, he would tell me how he would try to explain his medical conditions to his friends and they would not believe him. I can not even imagine how tough that had to be for a 9 year old. It is tough on me when I try to explain it to my adult friends. He was giving up more of the things he loved to do because they were no longer safe for him and some things he was not doing because he was in pain. I knew he was feeling depressed at times because of the changes happening in his life. He needed something to cheer him up, he needed something to look forward to.

I contacted Make A Wish in April they had to contact Hunter's doctor to make sure Hunter did qualify. He was approved and in June we met with two volunteers from the foundation. They came out to ask Hunter his wish and get to know him a bit. They brought presents for all 3 of my boys. We decided after we found out Hunter would not need surgery over the summer to schedule his trip for the first week of November. He recieved a package in August with some of the details of the trip. He sat down and read over all of the information, his face lit up. This is his special trip!

Hunter is very excited to be going to Disney, we have been on the internet together many times since he found out his trip was approved looking at all of the attractions at Disney and the other parks we will be visiting. I know our entire family is looking forward to this trip. We all need this time to have fun as a family. I know without Make A Wish none of this would be possible for my family at this time and I know I could never give Hunter a trip like the one he is going to experience through Make A Wish.

Here's a couple pictures from the last time Hunter visited Disney/Universal Studios. He was close to 4 years old. He still has some memories of that trip. He still seems to remember how magical Disney is.

Muddy Day at the Maryland Ren Festival

2008-09-30T12:55:00.008-04:00

We spent Sunday at the Maryland Renaissance Festival. This is the 3rd year we have gone. As you can see from the slide show we were practically bathing in mud. Even with the mud we had a great time! We enjoyed watching some of our favorite shows, Fight Schooland Hack and Slash. It was one of the special theme weekends and this weekend it was pirates! Connor entered the costume contest as Cutthroat Connor. He didn't end up winning but he got the most applause from the crowd. He was up against babies and a set of twins. Others in the crowd were telling us Connor should have won. In Connor's eyes he did win, they handed out skeleton lollipops to all of the children that entered. He is still talking about that lollipop. I did not take many pictures because of all of the downpours we had to try to escape from, and I only got one picture with Chase in it. Chase brought a friend and they avoided us the entire day. We all had a great time, I think having the rain and mud made the boys enjoy the day even more than they have in the past.

Busy weekend in New York

2008-09-23T19:04:00.008-04:00

On Friday we traveled back up to New York so we could attend the Chiari walk on Long Island on the 20th. We returned home on Sunday since Chase and Hunter have school on Monday and Allen had work. We were all exhausted on the drive back home. I wanted to drive at least half of the way home so Allen could get some rest. I ended up driving an hour since I was starting to feel like I was dosing off and it was not safe for me to stay behind the wheel.

We left Virginia for New York after the boys returned home after school on Friday. We were in the van and on the road at 3:30, and did not arrive at Allen's parents house until after 11:00. In the past it has taken less than 5 hours to get to New York if traffic cooperates. Needless to say, we were not happy travelers.

On Saturday we were up at 6:45 to get everyone ready, registration for the walk started at 8:00 am. Hunter and I got a t-shirt, as well as Conquer Chiari bracelets. I am not sure how many people were at the walk but looking at the crowd I would say it was around 100 people. I saw Jen and her family at the walk, I first met Jen and her daughter when I was visiting her daughter at The Chiari Institute for her decompression for moral support. Her daughter looked great considering she had her surgery only 5 weeks ago! The walk on Long Island raised over $5000.00! According to the the Conquer Chiari website, the Walk Across America raised over $120,000 for research.

After the walk we had brunch at a local diner, the food was not good but we were so hungry that we gobbled it up. After brunch we went over to Brookhaven Wildlife Center. During the summer we went to a couple zoos in the DC area. Connor talks about going to the zoo almost everyday. My mother-in-law knew this wildlife center was minutes from the walk site and thought Connor would love going over and seeing the animals. She was right! That night we watched Amanda's (Allen's little sister) marching band at a marching band competition. Connor loved it! He was very tired but would stand up to clap at the end of every performance.

On Sunday we woke up and drove over to Queens for my appointment with the Chinese doctor. The massage I recieve from him is painful and has brought tears to my eyes at times. But I always have a reduction in my pain after the appt. and this lasts for weeks. During this appointment he was doing the massage the same as always but it really did not hurt much. I am thinking this is because my muscles are starting to relax some.

After my appointment we drove over to Manhattan to visit someone I met at the ASAP conference in July. Kathy lives in PA but her daughter lives in Manhattan and she happened to be visiting her daughter that day. She is a sweet woman and we have kept in touch since the conference. It was nice spending time with her and her family. After spending an afternoon with Kathy and her family, my family was wiped out but we had to get back in the van and drive home. Of course we ran into more traffic problems, but it was worth it. I had a great time in New York!

More tests ordered

2008-09-19T10:46:00.007-04:00

We went to Baltimore yesterday for our annual check-up with Dr. Francomano. The appointment was for Chase, Hunter, and myself. It took over 4 hours to go over all of our updated information.

Dr. Francomano suspects that we may have Loey-Dietz Syndrome. Loey-Dietz Syndrome is a recently discovered genetic syndrome. Loey-Dietz Syndrome has many of the same symptoms as Ehlers-Danlos Syndrome. Dr. Francomano told me many of the people that have been diagnosed with Ehlers-Danlos Syndrome actually have Loey-Dietz. As you can see from the list below the signs and symptoms are very similar.

Widely spaced eyes (orbital hypertelorism)
Cleft palate or bifid uvula (a split in the tissue that hangs down in the back of the throat)
Aortic and arterial aneurysms/dissections with tortuosity (corkscrew structure) of the arteries.

Other findings can include:

Scoliosis
Indented or protruding chest wall (pectus excavatum or pectus carinatum)
Contractures of fingers and toes (camptodactyly)
Long fingers and lax joints
Club foot
Premature fusion of the skull bones (craniosynostosis)
Joint hypermobility
Congenital heart problems including patent ductus arteriosus (connection between the aorta and the lung circulation) and atrial septal defect (connection between heart chambers)
Translucency of the skin with velvety texture
Abnormal junction of the brain and medulla (Arnold-Chiari malformation)
Bicuspid aortic valves

Some of the signs and symptoms are unique to Loey-Dietz, the bifid uvula, the widely spaced eyes with slight downward slant. Many people diagnosed with Loey-Dietz also have the cervical spine instability and Chiari Malfomation. Loey-Dietz also has many of the complications seen in Vascular EDS.

Dr. Francomano explained to me that this syndrome is a newly recognized syndrome and when we first saw her a year ago it was not on her radar yet. She is going to have me tested first. She said the blood test to be diagnosed costs thousands of dollars. If I test positive my boys will be tested. I read on the Loey-Dietz website that only 180 individuals have been diagnosed.

Dr. Francomano also gave me a script for Chase to have an MRI of his brain and complete spine to look for Chiari and Syringomyelia in him. I have decided I am going to call The Chiari Institute and have them do the complete work-up for him. Dr. Francomano did not order any new tests for Hunter. She did give us suggestions on things Hunter can do to help ease some of his pain.

I also want to thank everyone for the comments left on my blog and for the personal emails. I am feeling much better now. It was nice hearing from so many others that truly do understand what I am going through. At times I do feel alone in this, I know many others diagnosed with rare conditions feel the same way. I learned through this that we really do need to reach out to each other when we are feeling down. Just letting it out and knowing I would be heard brought me out of my funk.

I need to get back to my packing. We will be leaving when Chase and Hunter get home from school for the Chiari Walk in NY. I am looking forward to seeing some friends I have met through my Chiari journey and also making some new friends. I will post pictures when we get back.

A Weak Moment

2008-09-12T18:18:00.005-04:00

I have been feeling very bummed out lately. This started weeks ago when I had tendinitis in my fingers on my right hand. I was not able to use my hand for anything without it causing extreme pain! But being the "tough girl" I am, I still tried to do the stuff that needed to be done around the house. Typing was out and even holding onto the steering wheel hurt! I already have problems with my left hand from a surgery I had on my wrist in 2003. So this left me with pain and problems with both hands. The surgery I had in 2003 caused weakness and numbness in my left hand and fingers. Most of the time when I type I only use my right hand. I know because of these issues I overuse my right hand.

I feel like such a burden when I am not able to keep up with the stuff around the house. I know Allen works hard and lately he has been working very long hours. I do not want him to come home and start in on the things I did not get done. The cleaning, cooking, and laundry for 5 people. I see in his actions he is worn out. All of this has me in a funk I cannot get out of.

I know I have not been replying to the many emails I get. That has been impossible with my hand messed up. But I have been reading the emails I receive, I have also been reading the blogs and personal pages of others with these conditions. I have read from a woman who is losing her marriage because of the difficulties her diagnoses has brought to her marriage. Reading of the progression of these disorders in people that have been diagnosed with the exact same conditions I have frightens me. These conditions are progressive, we do not have a cure. Right now my next options is to have my skull repositioned over my neck, some of my skull removed, and have my skull permanently fused to my cervical spine. At the ASAP conference I attended in July I met a patient that had this surgery. She had the surgery 7 months before the conference and was mentioning how she could feel the screws that were holding her rods. She felt like the screws needed to be grinded down. Reading about people with failed fusions, the hardware in these people is sinking and causing some to have mini strokes, all of this has me feeling so depressed.

I have also been worrying about my boys. Hunter complains of pain more and more. Everyday since school began on Sept. 2, he has asked if he could stay home from school because he is not feeling well. Chase has been complaining of leg and lower back pains. We have an appointment with Dr. Francomano next week. Most of you know she is the leading expert in the U.S. on Ehlers Danlos Syndrome. I am worried about what she might tell me, I am sure she will order new tests. These test always seem to come back suggesting more problems.

We have all lost so much through these diagnoses. It is tough to know we do not have a cure, to know these conditions are progressive. The surgeries we are offered are just band-aids. The pain is not going to stop. The pain never stops! I just want it all to end.

I want so badly to stop feeling so sad about all of this. I think back to others I have found inspiration from. I think of the words they speak. People like Randy Pausch and Eckhart Tolle, from the book, A New Earth. At this time none of this is helping.

Summer 2008

2008-08-20T23:27:00.001-04:00

Visit to NY, Chiari Walk, and Fundraising

2008-08-12T23:53:00.009-04:00

We traveled back up to New York over the past weekend. We went up to spend some time at the beaches on Long Island. The boys spent a day at Adventureland, we took Chase to Brooklyn Banks, and we brought Allen's sister Amanda home with us. The day the boys spent at Adventureland with Allen and my mother-in-law, I went over to North Shore University Hospital. This is something I have been doing during our visits to L.I. New York. I have been stopping by the hospital to visit patients of The Chiari Institute. I have visited mainly the pediatric patients of TCI. I like to stop by with the parents permission and bring gifts for the kids. The Chiari Institute has patients from all 50 states and many foreign countries. Most of the patients that have surgery through TCI do not know anyone in the NY area and so far everyone has loved having the company and I love seeing the looks on the kids faces when receiving a gift. I feel blessed to have my in-laws so close to TCI, this is my way of giving back for all of my blessings.I hope in the near future I will have gift baskets put together for the boys and girls having surgery to give to the kids during my visits.

Hunter and I have registered to be in the Conquer Chiari Walk Across America, September 20th, 2008 on Long Island in the city of Patchogue at Shorefront Park to raise money for Chiari research. Allen and I did want to get a Chiari Walk organized in the D.C. area, but by the time we contacted Conquer Chiari it was too late to have a walk in our area. This is a walk I wanted to be a part of so we decided to travel back up to New York so we could participate. Conquer Chiari is suggesting that each walker try to raise $100 for Chiari research. Here is the link to the on-line sponsor donation form if you would like to sponsor us for the walk, remember we are walking at the Long Island, New York Conquer Chiari Walk please put one of our names down for walker's name (Laurie Yeh or Hunter Edwards).

I have started some fund raising of my own. I have been selling my Chiari bracelets and jewelery. I am donating 10% of my profits to Wishes and Rainbows. I plan to increase the amount I donate as I get more of our doctor bills paid off.

I also had time to visit the Chinese doctor I have been seeing. Again, I had acupuncture and the massage. I have been having terrible pain in my ankle, so he spent some time massaging my ankle and he did acupuncture in my ankle and leg. The massage was very painful, I had tears rolling down my cheeks, but I do have more mobility now, so it has helped. He has been a godsend since I am not able to have the surgery I need at this time because of being diagnosed with osteopenia. The treatments I receive from him has reduced the pain I feel throughout my body. I do wish it would help these headaches more, they have come back with a vengeance, nothing seems to help. That is expected though when you have brain in the neck!

Randy Pausch on Primetime

2008-07-29T21:02:00.013-04:00

I know it is only one hour away until this special is on TV but I want everyone that reads this post to watch Primetime tonight. Tonight's show will focus on Randy Pausch and the story of his life and death. Randy's story has changed my life and I am now living better because of him.

The Last Lecture Book by Randy Pausch

2008 Annual ASAP Medial Conference

2008-07-27T21:51:00.005-04:00

I attended the ASAP Medical Conference in Arlington, VA July 23-26. I left there with more knowledge of the conditions Hunter and I have been diagnosed with. I also met other people that have been diagnosed. It was nice sitting down face to face and talking with people that understand the frustration of being diagnosed with rare and unknown medical conditions.

July 23, 2008, We met in the evening to pick up conference materials and we had a meet and greet with appetizers. This evening I met people from different places in the United States, FL, NC, NJ, CA, and MD, I felt sad listening to their stories. Many of these people do not have doctors that know how to treat them. I felt blessed, that I am a patient of The Chiari Institute. I truly feel like Hunter and I am in the best hands at TCI.

July 24, 2008, Their were five speakers this day. The seats in the conference room were very uncomfortable but I did manage to sit through each session. The speakers spoke on many topics, Chiari and Syringomyelia, Pain Management, Social Security, Tethered Cord Syndrome and Treatment of Chiari and Syringomyelia.

Pediatric Neurosurgeon, Dr. Jerry Oakes spoke about some of the unique symptoms that he sees in infants with Chiari. He said the parents describe the infant as the best baby in the world, the baby does not cry. He explained this would be because the baby has learned when he or she cries they arch back and the baby would have pain in the head and neck. They also found these infants were not having bowel movements because the straining would bring on headaches and pain. This made me think back to when Hunter was an infant. Hunter was my best baby, he almost never cried. He was also always constipated and had few bowel movements. Hunter still has these "unique symptoms".

Pain Management Dr. Ann Berger, spoke some on neuropathic pain, and how this is more difficult to treat than the other types of pain due to the damage of the nerves. This type of pain has been difficult for my physicians to treat. Now I have a much better understanding as to why. She spoke about non-medication treatment to be used, some I can remember she mentioned are massage, acupuncture, tens unit, reiki, and meditation. Dr. Berger has written a book titled Healing Pain, I plan on buying this book soon.

July 25, 2008, This is the day I was most excited about. Dr. Bolognese, my neurosurgeon from The Chiari Institute was speaking. The topic of his session was the "Association of Chiari malformation Type I and tethered cord syndrome and the preliminary results of sectioning the filum terminale". Since I have had sectioning of the filum terminale (tethered cord surgery), I wanted to hear these results. When he was explaining the results, I felt like I could of been one of the patients in these results. He mentioned the improvements many had after surgery. The same improvements I have had, reduction in the thoracic syrinx, reduction in bladder problems. I found out at this conference just how controversial this topic is between the neurosurgeons. One of the other doctors at the conference had said he did not believe the tethered cord caused syringomyelia and would not cut the filum terminale to treat thoracic syringomyelia.

Another doctor I was excited to hear speak this day was Dr. Arnold H. Menezes. He spoke about "Techniques and Problems of Craniovertebral Fusion for Craniocervical Instability and Hindbrain Herniation". I was interested in this because someday in the future I will need craniocervical fusion. He mentioned that when doing craniocervical fusion the fusion should involve the least amount of cervical vertebrate possible. I liked hearing this because I have been told I would need to have my skull and complete cervical spine fused. He then said patients with Ehlers Danlos Syndrome may need longer fusions.

I have to mention this doctor, the urologist Dr. Toby Chai, that spoke on "Urological Issues in Patients with Spinal Cord Dysfunction". This doctor had everyone in the room laughing. He told us how things going on "up here" can cause problems "down there". He talked about the issues I know many with syringomyelia face, urinary incontinence, he talked about the different kinds of incontinence and some of the treatments for these problems with medication or surgical intervention. This guy was very comical through his explanation of all of this.

July 26, 2008, This day another doctor from The Chiari Institute spoke. Dr. Roger Kula, spoke about another problem I deal with and I know many other Chiari patients have a problem with. He discussed the "Brain Fog" many of us feel. He mentioned some studies that have been done at TCI and the results of these tests. I did take notes on this but now I cannot find the notepad I wrote on, I am thinking I left it at the hotel.

Geneticist Dr. Joan E. Bailey-Wilson, spoke about a study that is being done now in a village in Russia with a high percentage of the people in the village with Syringomyelia or Chiari. They are trying to find the gene or genes causing these conditions. It sounded like it will be a long time until they have this study done. It does seem like these conditions are being ignored and no research is being done. But I found out at this conference this is not the case. I am sure it is not as much as most would like and it is not as much as other well known conditions, but the word is getting out through organizations like ASAP and more doctors are becoming involved.

During these days spent at the conference I met and got to know more people and we shared our stories of frustration with being diagnosed with these rare conditions. I know we all enjoyed that feeling of knowing we are not alone and we do have wonderful doctors on our side. I met some people I plan on keeping in touch with and I hope through this connection it will become easier living with Chiari, Syrigomyelia and the related conditions.

Good News for Hunter

2008-07-22T21:25:00.011-04:00

Sorry it has taken me so long to update about Hunter's appointment, we did make it to The Chiari Institute. We have great news, Hunter does not need surgery at this time. Hunter was seen by Dr. Mora. Dr. Mora explained the MRI findings. Hunter's syrinx has grown some, it was from T-3 to T-9 when last checked in January. It is now T-2 to T-9 but it only grew in length, none in width. Dr. Mora told me they are more concerned with the width of the syrinx as this causes more damage to the spinal cord. He had a very minimal change in the length of his brainstem. During Hunter's exam, Hunter was wearing his Heelys. Dr. Mora noticed Hunter skating around on the heels. He asked Hunter if that caused pain in his lower back or gave him the urge to go to the bathroom. This is not the case, Hunter loves to wear his Heelys. Dr. Mora said he did not think Hunter's spinal cord was tethered very tight at this time since riding around on his Heelys is not causing him any problems. Those of you that have a tethered cord know during the tethered cord screening they have you walk on your heels. This for me caused more back pain and I wanted to run to the nearest bathroom. They want to see Hunter back in 9 months for more imaging to look for any changes. Dr. Mora also wants Hunter to work on improving his posture using the Alexander Technique. He thinks this will help reduce some of the pain Hunter has in his back and neck. I was also told to bring him back sooner if he has an increase in his symptoms.

We also spent some time with Allen's family. We had a wonderful time in New York during this visit. It was like a mini family vacation. We had time to go to the beach and to Splish Splash water park on Long Island. Most of our trips to The Chiari Institute we try to fit in a trip to New York City. I enjoyed our time staying on Long Island more than any of our trips into the city. We were in New York until the day of Connor's 3rd birthday so Connor was able to celebrate his birthday with his grandparents . Connor also had his big party at our new place on Saturday. I will add some photos below from the past couple weeks, they have been busy!

Too Much Going On

2008-07-03T23:18:00.010-04:00

Like everyone else we are busy! It is summer and the kids are out of school. But, of course that is not enough for us so we had to add more.

We are moving this weekend. We are only moving about 20 minutes away, but thank God! it is into a bigger place. With three growing boys we need the space. So, I have been packing, it seems like non-stop for the past week. It is almost done. I only have a bit more to pack in the kitchen, which is great because Allen's friends will be here tomorrow to help start loading the truck. What wonderful people to help out on the 4th of July. I am happy to be doing something productive today. Such an improvement from last year.

I am also trying to prepare myself for Hunter's follow up appointment at The Chiari Institute on July 14th. He has an appt. during the early morning hours on July 14th for imaging and an appt. at TCI in the afternoon. During this appt. we will find out if Hunter has had a change in his brainstem elongation or his Chiari and we will know if he needs tethered cord surgery. This has been keeping me awake at night. I have been thinking about the changes I see in my son. He is walking different, playing different, just does not seem like the same boy he was before this started. I also know Hunter has noticed a difference. It is heartbreaking to watch your child go through these changes. I have had tethered cord surgery, so it frightens me to think of my son having this same surgery. I know how painful the recovery can be. I do not want my little boy to go through that, but at the same time I know it can help him. It has helped me. I also have confidence in our doctors. I know when Hunter needs this surgery he will be in great hands.

So, I am going to get back to the packing, and I hope after that I am able to get some much needed sleep. If we have our internet up and running before we leave for NY I will add an update.

Article in the local newspaper

2008-06-19T13:22:00.001-04:00

Reston Resident Blogs About Her Health to Help Educate Others

By Leslie Perales
Observer Staff Writer

Growing up, Reston resident Laurie Yeh had frequent headaches and experienced joint pain in her ankles, knees and hips. She said she often felt intense burning and pins-and-needles sensations in her legs, but doctors always told her the pain was from migraines or growing pains. But when the pain never went away, she said she began to wonder if she was experiencing something more than just bad headaches and growth spurts. Her symptoms were varied and doctors could not provide her with any answers, Yeh said.

For example, when she would stand for long periods, she would feel dizzy and lightheaded, she said. These symptoms would remain even when she sat down again, she said. "I was afraid to go grocery shopping," Yeh said. "I was afraid to go anywhere I would have to stand in line."

About two years ago, the 32-year-old Yeh finally started to get answers to her medical questions. Doctors first diagnosed her with postural tachycardia syndrome, also known as POTS, where blood pools in the limbs and results in increased heart rate, fatigue, visual blurring, weakness, anxiety and mental fogginess.

Shortly after the POTS diagnosis, she had an MRI to try to pinpoint the location or cause of her pain. When the MRI showed a cyst in Yeh's spinal cord, a disorder known as a syringomyelia, her doctors referred her to a neurosurgeon. She was then diagnosed with a Chiari malformation, where her brain protrudes out of the base of her skull.

Soon after, Yeh started to research the condition and learned about the Chiari Institute in New York, a facility that is described as a "comprehensive, multidisciplinary center for the management of patients" with Chiari, according to its Web site. Yeh met with doctors at the institute in April 2007 and learned even more about what had been causing her lifelong pain.

Yeh's Chiari was caused by tethered cord syndrome, which limited movement of Yeh's spinal cord and caused pain in her legs and problems with her kidneys. At the Chiari Institute, Yeh also learned she had Ehlers-Danlos Syndrome, a connective tissue disorder that results in unstable and flexible joints. People with EDS dislocate joints frequently and have stretchy skin that bruises and cuts easily. She said she then learned that EDS had caused the tethered cord syndrome and all of her other medical conditions.

"The base would be that I have Ehlers-Danlos Syndrome," Yeh said. Though she finally had a full diagnosis, many doctors would later tell her they did not know enough about the conditions to treat her properly, she said. "It took about a year and a half to find good doctors that I trust," Yeh said. "I feel like all we do is go to the doctor." She said she now sees a cardiologist, a neurologist and a doctor for pain management, as well as her family physician.

Yeh said her family learned that EDS is a genetic syndrome and her 9-year-old son, Hunter, was diagnosed with EDS in fall 2007. "It hurts me to know that I gave that to him," she said. "It's heartbreaking to know that your child is in pain and is suffering." Since being diagnosed, Hunter has had to stop playing contact sports and other similar activities where he might be easily injured.

A little more than a year ago, Yeh underwent surgery to repair the tethered cord syndrome and she said the surgery reduced some of her symptoms and alleviated some of the pain she had in her legs. Though the prospect of more surgery is frightening, she knows it is necessary, she said. For now, she said, she does what she can to control the symptoms. "We have to make huge lifestyle adjustments to live with these conditions," she said.

One thing that has proven helpful through her journey has been finding information and support on the Internet. As Yeh learned more about Chiari and EDS, she started an online journal to teach her friends and family about what she and her family were dealing with. She said support from her online friends has been wonderful and she has found many people with health issues and frustrations similar to hers.

"People call it the invisible disability," Yeh said. She said people often say she does not look sick, so they do not understand what her life is like. "The pain is part of me," she said. "I've always had it. This is the only life that I have. I can't stop living."

Yeh said she not only hopes to educate others about EDS and Chiari, but also to help people understand that it is not always possible to know how someone feels by how they look. "You never know what people are going through," she said. Visit www.laurieyeh.blogspot.com.

Low WBC Count Update #2

2008-06-09T23:28:00.002-04:00

Just a quick update to let everyone know that I called the hematology/oncology practice and Good News! I do not have lupus. The doctor told me that in some people the WBC counts run low, he does want to see me for a follow-up in 3 months. I will let you know if this ever becomes anything that the doctors are concerned about. Right now I am just glad I did not receive any new bads news. I think I have been given more than enough to deal with.

Update on my low white blood cell count

2008-05-30T16:16:00.005-04:00

I went to my appointment with the hematologist/oncologist yesterday. My white blood cell count is still low. The doctor looked at the results of my other counts. He said "good news this is not a cancer" what a relief!. That is what I was most worried about because when I googled causes of low white blood cells the search always came back with links to sites about leukemia. He went on to explain everything he looked at in my blood, he threw out many words I had never heard and now I can't remember. He then asked if I have ever been tested for lupus. I have not, he said he was going to have me tested for lupus. I came home and googled symptoms of lupus and I do have many of the symptoms on the list but these symptoms are also common in Ehlers Danlos Syndrome and the related conditions I have been diagnosed with. So more waiting on results. He said I should hear from his practice next week with the results.

Low White Blood Cell Count

2008-04-30T21:50:00.003-04:00

I mentioned in my last post that I was told after a recent physical that my white blood cell count was low and I needed to have it retested. I went to the doctor yesterday to have this done. I got a call from the nurse at my doctors office this afternoon, she said my white blood cell count is now even lower then it was a couple weeks ago. My doctor has referred me to a Oncology and Hematology practice. I called right away to schedule an appointment. I said in my last post I was not going to worry about it yet, now I am getting a bit freaked out by this. I don't know if I can handle more bad news.

Trying hard just to keep up!

2008-04-24T08:06:00.022-04:00

It has been a couple months since I have given an update on what we have been up to. I warn you in advance, this could get long!

We have been very busy since Hunter's appointments at The Chiari Institute. Since Hunter's diagnoses he now has many appointments. He has started physical therapy, he has been fitted for an Aspen collar and of course he now has more doctor appointments. Hunter is also doing extra activities. He has been upset about giving up things because of his diagnoses. He had been asking if he could try fencing for over a year now, since this is an activity that is safe for him to do he is now taking fencing. He has also started flag-football. Some of you know that Hunter is a very athletic, competitive boy. He loves football! He cried the night he was diagnosed with Ehlers-Danlos Syndrome because he was told to avoid contact sports. He cried because he said his dream was to become a pro-football player and he knew he would not be able to play tackle football. It seemed so unfair that he had to let go of his dream at such a young age. Hunter is also busy with Cub Scouts and play dates with his friends.

I've also had lots of doctor appointments. I have found a wonderful pain management clinic. My physical therapist from another facility recommended the practice. A great surprise a few weeks ago was that my physical therapist is now working at my pain management clinic. She is a wonderful person and also my neighbor. Seems like we are just meant to be together. It was the pain management clinic that sent me for the tests on my knees. I have received the 3 weeks of injections into my knees. I am still having some pain in my left knee but it has helped. I have not had much luck with the narcotic medication for the other pain though. When I went to my first appointment for pain management I was told by my doctor since I am "narcotic naive" she would need to start me on a low dose and let the medication slowly build up in my system. I have tried darvocet, methadone, and vicodin. I did not like the darvocet or methadone. I had a pain management appointment yesterday and I am just going to take the vicodin as needed for pain when it is so bad I need to take it. I was also given a TENS unit to use from my physical therapist. My insurance company will not approve for me to have a TENS unit, they have said it is experimental when it is used at home. They will only approve in office TENS unit therapy but that would take up all of my approved physical therapy appointments. The doctor at my pain management clinic and my physical therapist let me take the unit home yesterday. I am hoping this helps relieve some of the pain in my back.

I also went to my primary care physician to have a physical to check for any problems with my general health. I had blood work and a physical done last week. My white blood cell count came back low so I am having that retested next week. This could be caused by so many different things so I am not going to worry about it just yet.

I have been trying other things besides the prescribed medication to help with my pain and symptoms. In March I did The Velocity Diet. I did this to eliminate gluten completely from my diet. I even cut out the peanut butter and used other nut butters. I did have a reduction in my pain. On the diet you are allowed one solid meal per week. The first week and second week on the diet I stuck to having a gluten free meal. The third week I did not follow the recommended guidelines for a meal and it definitely was not gluten free. I was craving Chipotle and that is what I had. I did notice in the next couple days after that meal my pain was increasing. So now I know that controlling my diet is another way for me to help control the pain I feel. Now I just need to commit to living on a gluten free diet at all times. Another reason for doing the diet was for fat loss, I lost a total of 8 pounds and 10 inches in 3 weeks. Being on the diet also got me out walking and exercising. I have now invested in a pair of MBT shoes. Going for walks with these shoes on I have noticed after my walks I have less pain in my lower back and knees. The shoes also help me walk more upright so they are helping with my posture. If you do not stand upright you sway back on the heel.

For Easter we went to New York at Allen's parents house. We had a nice visit, Easter dinner, and a Easter egg hunt for the kids. This time we did not have any appointments at TCI. We even spent a day in NYC at Times Square. I had two visits with the Chinese doctor that I have been seeing. I had acupuncture done again at both appointments and the massage. I have had a few people send me emails and ask for more information about my treatment with this doctor. I think most of us know about acupuncture, not really something I need to explain. The massage however is not like any massage I have ever had. During the massage the doctor walks on me, he uses his feet and toes to massage my body. This at times is extremely painful. During the massage the doctor does a lot of moaning. It is almost like he is moaning to help release my pain. I am always sore for a day or two after the massage, it exhausts me and have slept for up to 16 hours after the treatment. I was having unbearable pain in my neck before my treatments with the Chinese doctor began. The pain is not completely gone but it is at a level that is bearable and it is no longer keeping me awake at night.

Chase and Connor are also keeping me busy. Connor stays busy all week with play dates and he is now taking a class at the community center, there he gets to play and do arts and crafts with other children his age. Connor is only 2 years old so I am with him during all of his outings. Thankfully the children Connor gets together with for play dates their mothers are some of my closest friends. So I also get to spend some time with friends. Chase is a teenager, he is happy as long as he is spending time with his friends and gets to ride his skateboard. He does need rides to the mall and his favorite ice-skating rink.

I have also been trying hard to help Allen more. He does so much around here. Most days I am completely exhausted after the few hours I am out with Connor in the morning. The exhaustion comes from so many different things, the pain I feel just getting up to start my day, from trying to function when I still have so many symptoms from the POTS. But I have just been pushing through the exhaustion and trying to get the cleaning done. I feel so useless when Allen comes home after he has had a long day at work and he starts right in on getting things done at home. He is a wonderful and supportive husband and I know he deserves a break. I am also trying to get some normalcy back in my life. I am not dying so I need to find away to start living. These conditions do make living more difficult but I am trying to find a way to make life better for myself and my family during all of this.

Montana News Association Broadcast on Chiari

2008-04-14T23:14:00.009-04:00

Please click the link at the bottom of this post to watch a Montana News Association Broadcast on Chiari featuring Julie Carter from ChiariPeople.Org. Julie Carter and her family were also featured on Extreme Home Makeover on ABC. Julie Carter explains Chiari in easy to understand terms in this broadcast. The broadcast goes on to discuss a teenager, Kati Wetch that has been diagnosed with Chiari and is fighting to walk on stage with her graduating class. This also includes her struggles of suffering with Chiari and related conditions.

Please scroll to the middle of the page and wait for the broadcast to begin. You will have to wait through a sponsorship commercial.

Click below to watch the broadcast
Montana News Association Broadcast on Chiari

My store is now open!

2008-04-04T20:15:00.012-04:00

My store is up and running at Etsy.com, you can purchase my necklaces and bracelets at:
http://ylaurie.etsy.com

If you want to read more about the jewelry please take a look at my blog post from March 17, 2008:
March 17th Blogpost

Thank you Maura K. who designed my logo, she is a freelance graphic designer out in Colorado.

Must see videos on the conditions I suffer from

2008-03-17T22:21:00.004-04:00

Very informative video on Postural Orthostatic Tachycardia Syndrome

Ehlers Danlos Syndrome on The Discovery Health Channel

Chiari Malformation and Pain Management

A comedian that suffers from Syringomyelia and his way of bringing awareness to the disorder. Not appropriate for children.

My Chiari Awareness Bracelets/Necklaces

2008-03-17T01:36:00.008-04:00

I have finally started making my necklaces and bracelets. I told some of you in December that I was going to start making Chiari awareness bracelets to try and sell here on the internet to raise money for my doctor bills. I spent a couple weeks searching for the perfect beads and purple awareness ribbon charms. Then, Christmas came and I was overwhelmed with everything that needed to be done for the holidays. After the holidays my focus became getting Hunter to New York for his consultation at The Chiari Institute. After Hunter was diagnosed in January I just didn't feel like starting on the jewelry. I have decided no more excuses and have started.

I chose Amethyst and Swarovski beads to be used in every piece of jewelry I make. Amethyst has been around for centuries and was often worn by royalty, it is also often worn by flower girls and bridesmaids in weddings. The swarovski beads blend well with the Amethyst beads and are very popular these days so I chose them for every piece also.

I will be making bracelets and necklaces. For the necklaces I am using ribbon instead of chain because I had heard many people living with Chiari complain of not being able to wear heavy chains around their necks.

I am going to need my husbands help in the following days to set up an account to list the bracelets/necklaces I have for sale. I wanted to let those of you that know I am doing this and those that have asked, that I have started. Above is a preview of the jewelry I have designed.

Mother of children with Chiari/EDS looses custody of her children

2008-03-11T01:00:00.008-04:00

I just read an email from a support group I belong to. The mother in this article from the LA Times below that lost custody of her children after being accused of have Munchausen syndrome by proxy is asking patients of The Chiari Institute to "Please take a moment and write a letter for TCI and for every person who will benefit from being seen there." in response to the following comment in the article.

"Dr. Sarah Roddy, a pediatric neurologist at Loma Linda, told detectives she didn't believe Esther had a Chiari malformation. The Chiari Institute, she said, was "questionable" and "will do surgery on anyone."

You can submit a letter on line at the link below.

http://www.latimes.com/services/site/la-contactus-edguidelines,0,3131285.htmlstory

Link to the newspaper article from the Los Angeles Times

http://www.latimes.com/news/local/la-me-numunchausen9mar09,0,2366586,full.story

More Diagnoses

2008-03-02T16:48:00.014-05:00

Last month I began having terrible pain in my left knee, I didn't do anything to injure my knee. My knees had started to hurt for a few months but the pain was increasing and had gotten much worse when going down stairs. I mentioned this to my doctor at my next appointment, so the doctor ordered X-rays for both knees. The X-ray showed my left patella (kneecap) was not centered. My kneecaps have always easily moved around due to my Ehlers Danlos Syndrome. After looking at the X-rays the doctor ordered a MRI of both knees. I got these results back on Friday.

Both of my knees hurt, they have always hurt, it just the left knee had got so bad I mentioned it to the doctor. The results indicated that my left knee has a partially ruptured Baker's cyst. On my right knee there is another Baker's cyst, along with quadricep tendinopathy, and edema anterior to patella and patellar tendon. Baker's cysts most often occur in patients ages 55-70. My doctor thinks the cyst are likely caused from arthritis of the knee. I am going to get injections once a week for three weeks. I hope to get some relief from these injections. Another option is surgery, I would not want to have surgery on both of my knees. The quadricep tendinopathy I am thinking is a result of the EDS, again I have not done anything to injure myself and trust me it's not from over use.

I mentioned in a previous post I was diagnosed with osteopenia at the end of Janurary. I found this out when I went to have Invasive Cervical Traction(ICT) at TCI. During my ICT procedure I was told that my occipitoatlantal joint, the joint that allows the head to rotate over the neck is not correctly positioned. Dr. Milhorat told me to think of it as a ball joint, thats not seated correctly (like it is gliding out of place). During ICT it would be properly positioned but afterwards it would glide back into the misaligned position. I can't ever recall having that serious of a impact on my head to "dislocate" it except for one incident. The summer of 2006 I was putting Connor in his car seat and I hit my head very hard on the door frame and almost blacked out. Soon after this incident are when all of my Postural Orthostatic Tachycardia Syndrome(POTS) symptoms started surfacing.

Recently my friend asked me to tell her everything I have been diagnosed with again. I do not talk about my health problems very much. I try not to complain to my friends when I am in pain. When we do get together I just want to enjoy our time together and try to take some time off from all of these health problems. I am going to list my diagnoses and MRI findings here with links.

Ehlers Danlos Syndrome Classic Type (Beighton score 7)
Chiari 8mm
Syringomyelia T-3-T12
Retroflexed Odontoid pannus
Cranio-cervical instabilty
Basilar Invagination
Occipitoatlantal joint instability
Herniated Disks T-7-T-8
Scattered Schmorl's Nodes
Thoracic and Lumbar hemangioma
decreased CSF flow
Straightening of the cervical lordosis
Mild dextroscoliosis of the lumbar spine
Postural Orthostatic Tachycardia Syndrome
Brainstem elongation
Baker's cysts
quadricep tendinopathy
Osteopenia
Tethered Cord: surgery June 19, 2007

I am sure I could add more to this list since I have pain in other parts of my body. Right now I am thinking anything I get scanned will result in a diagnosis of something.

Dr. Spaceman

2008-02-26T00:17:00.005-05:00

Here is a clip from what I think is the funniest show on TV. I have never had a reaction to the medication I have been prescibed like Tracy in the clip, but I have had some bad reactions that have frightened myself and my family, and also some reactions that they have found quite amusing. I hope you enjoy the clip!

Actor Sean Astin Speaks On Behalf of ASAP

2008-02-17T13:20:00.013-05:00

Recently announced on ASAP.org Sean Astin is the new spokesperson for Syringomyelia and Chiari. You may recognize him as Sam from The Lord of the Rings, Mikey from the Goonies, Rudy from Rudy and many other movies. On the ASAP.org website you can listen to his message.

I was diagnosed with syringomyelia in October 2006 and Chiari malformation on December 18, 2006. My son Hunter was diagnosed with syringomyelia and a Chiari-0 on January 28th, 2008.

The Don't Quit Poem

2008-02-08T16:20:00.000-05:00

Don't Quit Poem
by anonymous

When things go wrong, as they sometimes will,
When the road you're trudging seems all up hill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest! if you must; but don't you quit.

Life is queer with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don't give up, though the pace seems slow;
You might succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man,
Often the struggler has given up
When he might have captured the victor's cup.
And he learned too late, when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you never can tell how close you are,
It may be near when it seems afar;
So stick to the fight when you're hardest hit;
It's when things seem worst that you mustn't quit.

Back from TCI/Updates

2008-02-01T22:00:00.001-05:00

Hello everyone! We are back home from New York. We left Thursday Jan. 24th and returned at 1:00 am on Thursday Jan.31st. Hunter and I both received a lot of information about our conditions while we were in NY for our appointments. I am going to go day by day in this update so I don't leave anything out.

1/25- Hunter was scheduled for his imaging at Manhasset Diagnostic Imaging (MDI) at 12:15. I filled out the necessary paperwork and we were brought to the back right away. Hunter had his 3D C-T scan first, then he was sent to another room for his MRIs, he had a cine, brain, cervical, thoracic, and lumbar MRI. After that he had time for a bathroom break before his X-rays of the cervical spine and lumbar spine. The techs at MDI were impressed with how well Hunter did during testing. His MRIs lasted almost 2 hours and he only had to be reminded to stay still a few times. We were at MDI for his imaging for 3 hours and 15 minutes.

The staff at MDI gave me Hunters films to hand carry to his appointment at The Chiari Institute(TCI). I knew they would do this since I have had imaging done at MDI also. I also knew I would look at his imaging myself. We got in the van with my husband and one of the first things I noticed in the imaging was that Hunter did have a syrinx. My heart sunk, I felt like my throat was closing, I could not breathe. I was gasping for air and tears were starting to roll down my cheeks. The noises I started to make were scaring me! Hunter was asking Allen (my husband) "What's wrong with mom! What's wrong with mom?" I wished then that I had waited until he wasn't around to look. I put the films away and calmed myself. I told him the experience of taking him there to MDI just overwhelmed me. I was not ready to tell him what I had just seen.

1/26-1/27-My husbands parents live on Long Island in NY. We are lucky we do not have to find a hotel like so many others do when they visit TCI. On Sat. morning I spent most of my time sitting in a rocker/recliner in my in-laws house next to Hunter while he was watching cartoons. I was sneaking in as many hugs as he would allow. In the afternoon Allen and the boys went to a birthday party at a family friends home. I stayed back at the house and went through the films and spent some time crying, I really needed to let it out!

On Sun. we woke up and had a lazy morning then got ready for lunch at The Fortune Wheel in Levittown, NY. Everytime we are in NY we eat here with Allen's parents. This is an authentic Chinese restaurant. If you are visiting TCI and you have a car it is worth the trip if you like authentic Chinese food.

After lunch we were off to see my Chinese doctor. I have blogged once about my father-in-law taking me to a Chinese doctor in Queens, that was in Sept. The treatment and medicine I received in Sept. did not seem to help at all. My father-in-law learned of this and found a new Chinese doctor for me. I went to see this new doctor when we were in NY visiting around Christmas. I had two visits with him in Dec. and two appointments during this visit. The doctor I am seeing now was a neurologist in China, he is licensed in NY to give acupuncture and massage therapy. The massage is not like any massage I have ever had in the past. He understands my conditions, understands how pulling up and pushing down on my head can make my POTS symptoms worse and how head positioning can bring on symptoms. He explained my conditions using his medical books to my father-in-law. This has helped my in-laws understand how serious these conditions really are. The Chinese doctor has done acupuncture on me at every appointment(it does help with the pain) he also does a deep tissue massage. I will add some pics Allen took, during some of the massage he actually walks on me. He tells me if I feel dizzy or uncomfortable at any time to tell him and he will stop. I did feel dizzy once during our first session, he stopped right away had me lie down and he took my pulse and blood pressure. I also drink "medicine" he gave me, it is really herbs. The last doc gave me herbs in a pill form. The herbs I have now need to be boiled and I drink the liquid. I do this twice a week. Like I have said before I have been trying everything!

At the 2nd appointment we did the usual but this time during the acupuncture I discovered I was able to swallow once he inserted a needle on the right side of my neck, it was wonderful, but as soon as he took the needles out however it was back to normal. Because the spot was a little sore I was pressing on it and discovered that if I pressed on it I could swallow again!

1/28-We arrived at The Chiari Institute at 11:00 am for Hunters' appointments. He was seen by the nurse first. She asked him questions for over 1 hour. It was nice that she listened to him. She did not ask me the questions, she asked Hunter. She never interrupted him while he was explaining his symptoms to her. When Hunter answered all of her questions we went out to the waiting room and the nurse came out and told us they were going to have to switch the neurologist we were scheduled to see. We were scheduled to see Dr. Chen, but we would now be seen by Dr. Kula. I was excited about this.

We sat down with Dr. Kula and began going over Hunters imaging. Hunter does have a syrinx (syringomyelia) from T-3-T-9 with a small tail that goes up into the cervical spine. The syrinx takes up 15% of the spinal cord at its widest point. Hunter also has a mild Chiari herniation, 2.3mm, decreased CSF flow, cranio-cervical instability, a retroflexed odontoid, and a flattened pituitary gland. Dr. Kula said he thought Hunter also had a tethered cord (TC) but he would want Hunter to have some urodynamics testing. He also said he would want Dr. Bolognese's opinion. We left Dr. Kula and went to the waiting room to wait for our next appointment.

When we were in the waiting room I asked Hunter how he felt about hearing the news. I was using all the strength I had to keep it together for him during this time. He said he was fine. He wanted to eat the snacks TCI had put out for the patients and he wanted to watch Sponge Bob. I let him do that. I went into the computer room at TCI to have a moment without Hunter to process everything we were just told. While I was in the computer room Richard Roberti, the Administative Manager came in to give me the welcome bag with the information they give to patients. I told him how we just talked to Dr. Kula and we were waiting for our next appointment with Dr. Chan the neurosurgeon. I told him that I wished we were seeing Dr. Bolognese, I trust his opinion and hearing this about Hunter for the first time I wanted to talk to Dr. Bolognese. Mr. Roberti said he would see what he could do. Less than 1 hour later I was told Hunter would be seeing Dr. Bolognese. I also want to say I have been seen by Dr. Chan. He is also a wonderful doctor, and for any follow up appointments for Hunter I would feel grateful to have him as Hunters doctor.

We waited until 7:00 pm to see the great Dr. B, he confirmed everything Dr. Kula said. He said he does suspect Hunter has a tethered cord but he wants to wait until Hunter has another growth spurt or 6 months to do re-imaging of his brain. Dr. B said if their is a change in the length of Hunters brain stem (brain stem elongation) or a change in the length of his Chiari then he would know for sure and Hunter should have tethered cord surgery. We also talked about Hunters cavernous angiomas(CA). I had been wondering if CA are common in people in the EDS/chiari population. Dr.B said they have not seen many patients with CA. So the answer was no. But he did explain the CA to me better then the neurologist and neurosurgeon I take Hunter to here in Virginia have.

1/29-1/30- I had pre-surgical testing at North Shore University Hospital in Manhasset on the 29th. I had to be there at 9:00 am and I was done before 10:00 am. As I was walking out of the hospital I saw Julie Carter sitting on a bench in the hospital. Julie Carter is the woman that had the Extreme Makeover, Home Edition Special on ABC. I just had to say hello! I introduced myself and we chatted for about 15 minutes. She was there with a friend from Montana that was having surgery, she was just there to give the friend support. We talked about Hunter and the news I had received the day before. We talked about her daughters and how they are doing. Later my husband asked me if I asked about her house. But I didn't even think of that. It was just nice chatting with someone that understands.

Tuesday, I had my invasive cervical traction (ICT). This was done in the OR at North Shore University Hospital. I was put under anesthesia while they attached the device. The test was positive, it took 30 pounds to find as Dr. Milhorat called it my "sweet spot". During my time in traction after my "sweet spot" was found my headache was gone, I was able to swallow without feeling a lump in my throat, my dizziness was gone, the tingling in my fingers lessened, I felt great! When the test was over and I was taken out of traction all of my symptoms came rushing back. My headache by the time I got to the recovery room was much worse then it was before the traction. I have had a terrible headache since the traction.

So I had the ICT, and I do see that it did help my symptoms, but before we left VA for NY, I expressed my fears to Dr. Bolognese about fusions and how I have heard of patients having failing fusions. He told me some of these patients that they see that are having failed fusions( and it is a very small % of people) it is happening because they have osteoporosis. He sent me a script for a DEXA scan. I had the scan before I left for NY. These results were faxed to TCI and I do not have osteoperosis but I do have osteopenia. Right now it's been found that osteopenia is common for people with EDS. So I cannot have a fusion. At this stage it is reversible so I am going to add another doctor to my list of doctors and see a endocrinologist and start building up my bones. Dr. B said to take a year to build my bones up then have the DEXA scan repeated. I know I have been telling everyone how frightened I am of the cranio-cervical fusion surgery and I still am, I don't think that will ever change. But I did enjoy my taste of how I could feel everyday if I had the surgery. Knowing that it is not an option for me now was hard to hear. Now that I know Hunter has these same conditions, I want to do everything I can to make myself stronger, healthier, so I can take care of him and his needs.

Update before we leave for NY/TCI

2008-01-22T14:38:00.000-05:00

We are leaving today for Hunters appointments at The Chiari Institute (TCI) on Long Island in New York. He is scheduled to have his imaging done at Manhasset Diagnostic Imaging (MDI) tomorrow on the 25th. The nurse, neurologist, and neurosurgeon will see him at TCI on Monday the 28th.

Those that have been to MDI for imaging know that after the imaging is over they give you a CD with all of your images on the disk, they also hand you your films to take to your appointment at TCI. I am going to have these in my hands over the weekend. I know how to spot a syrinx, chiari, and the other problems that might show up on his imaging. I know I will look at them over and over. I wish we were going to MDI then straight over to TCI. This is going to be a very long weekend!

I am also having some tests done. Lately I've had an increase in my symptoms. My POTS symptoms have continued to increase since having tethered cord surgery. I am going to have pre-surgical testing at NSUH on Tuesday the 29th, then on the following day I will be admitted to the hospital and go to the OR to have the invasive cervical traction (ICT). It will include a standing session with ICT because of my POTS diagnosis.

I am not sure how I feel about having this test done. I feel like it is one step closer to having the fusion. I have been trying everything to avoid this surgery. I do want to have the test just to see for myself if it does make a difference in my symptoms. I know I need to do something. I am not living now. I spend most of my time inside because I get dizzy after being on my feet more then 5-10 minutes.

Another symptom that got worse after surgery is the neck pain. I wake up many times during the night because my neck is sore and I massage it myself until I fall back asleep. I also feel like my head is much heavier since surgery, when sitting I need to support my head with my arms and hands. My lower body symptoms improved greatly with the TC surgery but it made all of my upper body symptoms worse! I was hoping the TC surgery was the only surgery I would need. The fusion surgery is the most frightening surgery I have ever heard of. I am going to try to stop thinking of all of this and go pack for our trip to NY. Take care everyone and I will update when we get back.

Here is a link to the surgery I am facing for those of you who have not seen it yet, the Chiari special on Discovery Health:
http://www.chiaritvspecial.com/

"My Favorite Things!"

2008-01-14T11:31:00.002-05:00

I know my blog has been a bit depressing lately. Most of my posts have been centered around my health conditions. I thought I should do something fun for once and let you get to know me a bit better. Oprah has her show once a year around Christmas time with her "Favorite Things" I love watching this episode and often wish I was in the audience receiving the gifts along with the other guests. Here is a list of my favorite things:

Brighton Handbags: I have never been into, Prada, or Louis Vuttion, (1) those would never fit into my budget, (2) they just are not as beautiful as Brighton bags. Brighton has the hearts that just make me happy, they also brighten my day.

Lucky Brand Jeans: These jeans have a cut for every body type, when you go into a Lucky Brand Store, you will always find a store employee ready to help you find the perfect pair of jeans. My back side has never looked better in any other pair of jeans! They are a bit pricey but well worth it when considering some of my other jeans never leave my closet.

Colonial Candles: These candles have the most wonderful fragrances, when I am feeling down I light these candles and it does improve my mood. They are also better then any air fresheners.

Lemon Aid from Sephora: My friend Sharon just got me this for Christmas, I love this product, it conceals the dark circles around my eyes. I love that it can be used with or without makeup.

Tassimo: This was a Christmas gift from Allen and my boys, I love it! I love being able to make just one cup of coffee, cappuccino, hot chocolate, chai tea, or just about any hot beverage my heart desires in 1 minute when I'm in the mood.

Pantene hair products: Late last year I started using Pantene, it is inexpensive and controls my flyway's and frizz.

Bath and Body Works: I love their cucumber melon lotion and body wash. Most of the time if you buy 3 you get 1 free. It has been my favorite fragrance for years.

Softlips: This is great for those times when I have chapped lips and nothing else seems to do the job. They have a variety of great flavors.

MAC Make-up: I do not wear much make-up. I just don't spend as much time getting ready anymore. I get dizzy after standing in the same spot for more then 5 mins. I use foundation, mascara, and lip gloss. I have found some of the best products at MAC. They also last a very long time. If you spend over $60.00 you get a MAC consultant to help you apply and help you choose the right colors for your skin tone.

Steve Madden Boots: These boots are fashionable and comfortable. Now that I'm only able to wear flats due to my balance problems it's hard to find boots that look good too. I just love them!

Those are my favorite things at the top of my list. I usually only receive most of those items on birthdays and Christmas. Since I have been diagnosed with these health conditions, things have changed and money is now tight but those items I listed will always remain my favorite things! Please tell me some of your favorite things!

My Amazon Wish List: http://www.amazon.com/gp/registry/wishlist/2KL0RMHBGBJEC

My Three Sons!

2008-01-08T22:09:00.001-05:00

Those of us living with these diseases know that they can be genetic. I have not yet written on my blog about how these diseases are affecting my 3 boys.

My son Connor is two and a half years old, he was born July 16th of 2005 a healthy baby boy with no visible signs of problems. At around 3 months he started to develop cafe-au-lait spots, these spots were not present at birth. I noticed he was developing more and more of these spots and they were growing at what seemed like a rapid pace. I mentioned them at his 4 month well baby check-up. The doctor mentioned a disease that cafe-au lait-spot were common in, but at that time she was not concerned about Connor. At Connors' 6 month well baby check-up his doctor decided it was time to start a work-up to begin to rule out if Connor had a disorder called Neourofibromatosis (NF). We met with a neurologist, dermatologist, and ophthalmologist, Connor also had a complete MRI of his brain and spine, At the end of all those exams/tests he was seen by a geneticist at Children's Hospital in Washington DC.

Connor currently has 7 cafe-au-lait spots, and macrocephaly (a large head) but he has not been diagnosed with NF. Like EDS, Chiari, and all of these other related disorders getting the diagnosis is tough and you have to meet certain criteria. He will be monitored by a geneticist at Children's and we will be seen as needed, as this can become a true diagnoses at any time. The geneticist said that out of the number of families that see him at this point only 2 out of 10 families need to come back for a follow-up. Their may be a link between NF and some of these other diseases I suffer from.

On September 12, 2007 I took my older sons Chase(13) and Hunter(9), to be tested for Ehlers-Danlos Syndrome (EDS) by Dr. Clair Francomano at GBMC in Baltimore, MD. Dr. Francomano did not want to see Connor at that visit because he was too young to be tested for EDS.

Chase, was diagnosed with Classical Type EDS. He only scored a 2/9 on the Beighton scale, before Dr. Francomano told me that Chase did have EDS, I was thinking to myself he was going to be fine because he was not able to bend himself into a "pretzel". Dr. Francomano based her diagnosis on other things: family history (myself), Bifid uvula, decreased gag reflex, cigarette paper scars, straigtening of the thoracic kyphosis, soft hyper extensible skin, and the big one, his ability to dislocate his shoulders on his own! Which to him is a cool trick to show his friends. Since the appointment he has been trying not to do this as often, but says at times he can't help it, he says he feels like his shoulders get tight and he needs to stretch them. He has been to PT to strengthen the muscles in his shoulders. Besides that it is yearly visits to Dr. F. He does not seem to have any pain issues yet. He has not accepted this diagnosis at all and prefers not to think about it. Chase is a joker! When we talk about him having EDS. He says he has "Extreme Dandruff Situation".

This is going to be the hard part and the main reason I have been putting off writing about this on my blog.

Hunter was also diagnosed with Classical Type EDS. Hunter scored a (9/9) on the Beighton scale. Dr. Francomanos' diagnosis was based on: pectus excavatum, soft hyper extensible skin, hyper extensible shoulders/elbows/knees/hips, hyper extensible CMC, MCP, and DIP joints, pes planus, soft, cupped auricles, he has easy, severe bruising.

After Dr. Francomano diagnosed my boys with Classical type EDS she sat down with me and answered my questions like a knowledgeable physician, she told me how at the time she did not see any sign of Chiari or tethered cord (TC) in them and how males with EDS do not seem to have as many medical problems as females. She told me they may never suffer the same problems I am suffering from. Then she changed and became a concerned mother, she patted me on the back and I could tell she cared how I felt hearing my children were just diagnosed with with this terrible condition. I will never forget that moment. She is not just a great doctor, she is a wonderful person. This was devastating news, I could not believe this was happening to my children. I thought our family had suffered enough. What's that saying? "When it rain it pours!"

On October 15th 2007, Hunter woke up before school not feeling well, he was complaining that his stomach was upset. I thought he was trying to get out of going to school. I told him to go into the bathroom and get ready and see how he felt. He went into the bathroom and came out looking pale and complaining of a terrible headache and telling me he was shaking in the bathroom (Hunter was never one to complain of severe pain). I took him to the ER and told them I suspected a seizure. The doctor ordered a CT of the brain. 30 minutes after the CT the nurse came in saying the CT picked up something and they were going to do an MRI. While we were waiting for the MRI his headaches were getting worse. The MRI lead to an MRA. I was so afraid. I did not know what was happening to my little boy. In the end I was told they found 3 lesions on Hunters' brain. I have been told the lesions are cavernous angiomas.

During the first two weeks of symptoms Hunter was getting headaches and having seizure-like episodes although the EEG in the doctors office and the 4 day at home monitor did not pick up a seizure. He had been having tingling, numbness, and pain in his legs and feet, back pain, headaches, and he says it feels better to walk hunched over. He recently had gone through a growth spurt. So I am suspecting TC and am thinking the cavernous angiomas are an incidental finding. We have a consultation at The Chiari Institute(TCI), Janurary 28th, 2008. Of course I have left a lot out. A lot of fighting with the NL, and the NS here in Virginia, I had to wait to find out what the lesions were in the first place, it took a couple weeks before they told me the MRI findings. The waiting to find out about the lesions was the worst part, I thought my son had brain cancer! This was the most heartbreaking thing I have ever been through. I would watch him sleep at night and wish I could take this thing, this unknown thing, that was invading my babies brain. I still do. Even if he has TC and right now the cavernous angiomas are not causing problems, they are still serious.

I just don't understand at times why all this is happening. The title to my blog "Y Laurie" is somewhat of a joke because of my last name. I had a nurse when calling me for an appointment not be able to pronounce my last name and she said "Laurie um Y" "Y Laurie" and I titled my blog that, but lately I want to scream to the world WHY? Not so much Why Me just why my children? God, Why my children? Why any children?

I am also suffering from the guilt of passing this on to my children. I did not know I had any of these disorders until Sept/Oct 2006, I gave birth to Connor, July of 2005. I keep telling myself I did not know when I had my boys that I had these weird diseases, but that does not lessen the pain I feel for passing this to my sons. My son Hunter is hurting right now and watching him hurt is much more painful then dealing with my own pain. I am thankful I was diagnosed before my boys were diagnosed with EDS and we have TCI and we are able to be seen by the wonderful doctors there, I will fight so my children will never have to suffer through the pain I did when I was a child.

Worlds Strongest Dad - Team Hoyt

2007-12-13T08:04:00.001-05:00

Lauries husband here,

If you haven't seen this already it's well worth the 10 minutes. If you have then you know it's worth watching again.

It's hard to remember sometimes that we are adaptable, that we can overcome. It takes something like this video to remind me that life is sweet and behind all what you see in this video, this family has struggled harder for the sake of "normalcy."

Enjoy. Oh and make sure you have a box of tissue handy.

Denied from pain management, again!

2007-11-21T21:31:00.000-05:00

My neurologist recently referred me to the VA S.I., for my pain. Recently the pain all over my body has increased, since Allen was out of the country for work last week. It's not just the incision site from the surgery but all over my back, my neck, my shoulders, my knees, and of course my head. Trying to keep up with everything in the house and the kids for a week, just wore me out. The pain from trying to do all of that has left me very tired and just "worn out" for lack of a better term.

I talked to someone at the VA S.I. Wednesday morning and was directed to 2 different people, they said they had to talk to someone else to let me know if I'm able to make an appointment in the first place. It seemed as if they were trying to get me to withdraw my request by saying my insurance might be out of network and wondering if I had met my deductible already. They left a voicemail this afternoon saying the following:

"Hi Laurie this is ***** calling you back from the VA S.I. and I told you I'd call you back with an answer and I needed to talk with my clinic coordinator first and according to um what she found out about your situation she is uh recommending um that you are probably not be a good candidate for us. So I would say you probably want to talk to your doctor and ask him for another recommendation to another place and I'm really sorry I don't want to dissapoint you but I have to do what my clinic coordintor allows here at VA S.I. ...Have a Happy Thanksgiving."

This is the 2nd time I have been denied from a pain management practice. In June I was able to at least see the doctor and he wanted a note from TCI saying he would be able to treat me due to my syrinx. What I got from this is that so the liability would fall back on TCI.

I feel very depressed and I don't know what to do next. I want to be able to find a good pain management program so that I can do stuff around the house, watch the kids and be a good wife like most 32 year old women without being completely worn out and run ragged for days after. I want to do all of this without the use of narcotic pain killers because I really don't feel I would be able to watch a 2 year old when I'm on narcotics. I wouldn't be able to drive him to his playgroups or anywhere. I wouldn't be able to drive my 9 year old to Cub Scouts or his friends home after their playdates on narcotics. My 13 year old still needs me to be to be present at his band preformance and to take him to SkateQuest on Friday nights. I still have so much living to do, but I am in so much pain. I want to be out enjoying life. I want someone to just give me an appointment and help me manange this pain. I know I am blessed right now, I do not have to work just to put food on the table, my hubsband, Allen is a great provider, I want to be able to make his life easier. I just want pain management. Which to some I'm sure sounds so simple. But I'm learning, is not so easy.

Entertainers with the same medical conditions I have been diagnosed with

2007-11-09T00:10:00.000-05:00

Every ones favorite Yellow Wiggle, Greg Page.

Greg Page has Orthostatic Intolerance (OI) also known as Postural Orthostatic Tachycardia Syndrome (POTS). Greg was diagnosed with OI/POTS last year and left the Wiggles.

http://www.cnn.com/2007/SHOWBIZ/10/10/the.wiggles/?iref=mpstoryview

Country Singer, Rosanne Cash has been diagnosed with Chiari 1 malformation and has cancelled her tour dates and will undergo brain surgery in New York.

http://www.cmt.com/news/articles/1573619/20071106/cash_rosanne.jhtml

Could the answers be in the poo?

2007-11-05T00:03:00.000-05:00

I was never asked to give a stool sample during my many visits to the doctors over the years. I wish their was a test as simple as "checking the poo" that could tell the doctors what is going on with the more complicated patients like myself.

Fund-raiser Thank You's

2007-10-30T08:44:00.000-04:00

Laurie's husband here. Thank you to all of you who came I know I'm going to leave people out and I apologize ahead of time. Laurie and I were amazed at how many people did come out to help us out.

-Thank you Greg of Catalyst Athletics for flying out here even after being kicked out of your place for almost a week. Despite what you say otherwise, I think you did a great job filling in for Robb
-Thank you Robb of NorCal S&C for coming up with this idea to begin with even if you weren't able to actually escape the airport of Chico.
-Thank you Jesse and Mark of Primal Fitness for hosting the event and allowing us all to play with all your cool things at your new gym.
-Thanks to all of those from the Performance Menu who traveled to be there, Steven, Jay, Derek, and Allison it was great meeting you guys for the first time, but it definitely won't be the last!
-Thank you Tom, Fred, Russ, Steve, Brian and Jen of CrossFit DC for coming (reminiscing about alley workouts too!)
-Thank you Jerry and the rest of the CrossFit Challenge crew for the strong showing and the coffee (Andrea)!
-Thank you Judd and Karen of CrossFit Extreme Fitness (opening Nov. 10th!).
-Thank you Tes from CrossFit Fairfax
-Thank you Jim of the famous Beast Skills
-Thank you to all those CrossFitters that I haven't thanked already that showed up, some of you traveled from as far as Colorado to Connecticut to Delaware to Columbia, MD.
-Thank you to my friends that showed up.
-Of course thanks goes out to all those people that have donated online which by itself has raised $2350!!!
Our family is grateful for and thanks:
-Denny C. for his generous donation
-Thank you Kelly and Tony G. for their generous donation
-Thank you Harin and Sophie S. for their generous donation
-Thank you Yoon S. for his generous donation
-Thank you Aaron F. for his generous donation

I don't have the final numbers from Greg of the total amount raised yet but I will soon.

Our family thanks everyone for the support that we have gotten from everyone. Thank you so much.

Oct 27th/28th Fund Raiser Reminder

2007-10-25T09:32:00.001-04:00

Laurie's husband here to remind everyone that Laurie's fund raiser is this weekend here:
Primal Fitness Gym http://www.primal-fitness.com/index.php?option=com_content&task=view&id=12&Itemid=14

To get there via Metro:
It is only 3 blocks or so from the Convention Center stop off of the Green line and the NY Ave Stop off of the Red line.

To get there via car:
Go here and put To: directions
http://maps.google.com/maps?oi=map&q=219+M+Street+NW,+Washington,+DC

For people coming to the Olympic Weightlifting part it is Saturday October 27 9:00am - 4:00pm & Sunday October 28 9:00am - 12:00pm
And if you haven't already signed up:
http://performancemenu.com/resources/events/DCOlyClinic.php

For people coming to the Nutrition part it is: Sunday October 28 1pm - 4pm
And if you haven't already signed up:
http://performancemenu.com/resources/events/DCNutrition.php

Laurie and the kids will be there for a bit on Saturday but the entire Nutrition seminar on Sunday, we will have flyers with information on Chiari and Ehlers-Danlos Syndrome information there.

Even though the fund raiser isn't for another few days we have already raised $1825!! Thank you to all the people that have donated so far and to those that have volunteered their time to make this possible!

Our family is grateful and thanks:
-Jesse Woody and Mark Toorock of Primal Fitness for giving us space to hold the fund raiser.
-Robb Wolf of NorCal Strength and Conditioning for flying here all the way from California to give the nutrition seminar.
-Greg Everett of Catalyst Athletics for flying all the way from California to give the Olympic weightlifting seminar.
-Flora May K. for her generous donation.
-Daniel D. for his generous donation.
-Elise and Kevin K. for their generous donation.
-Eva Claire S. for her generous donation.
-Stephen C. for for his generous donation.
-Grandma Chu (Laurie's Grandmother in law on my mothers side) for her generous donation.
-Chaplain Yost and his wife for their generous donation.

As always if you would like to donate click here:

The Chiari Institute Visit #3 TC Surgery Post Op-visit

2007-10-03T10:40:00.000-04:00

I went to The Chiari Institute on Friday 9/28 for my post-op appointment. I was seen by one of the neurosurgeons, Dr. Chan. We discussed the improvements I have had since my tethered spinal cord surgery. I have not had any kidney or urinary tract infections since surgery, prior to the surgery I would get them at least once a month. The tingling and numbness in my feet and legs which had improved greatly after surgery is now coming back. He said it could be from the increased physical therapy, maybe I had irritated a nerve. He said to continue the strengthening program I am doing. My headaches are still not as severe as they were before surgery and I was not getting them as often, but the past few weeks they have come back.

We also looked over my MRI's that I had done that same day as my appointment and my syrinx in my thoracic area seems to have shrunk some. Dr. Chan did not have the measurements yet, but by looking at them their was a noticeable difference. Dr. Chan thinks that the TC surgery was a success.

We then discussed the problems I am still having and other problems that have gotten worse. The next option for me would be the cranial-cervical fusion. He explained the surgery in great detail. The day prior to the surgery they would perform something called invasive cranial-cervical traction and take measurements to see what would make me feel the best while basically pulling my head up using weight. The next day for the surgery they would do a bony decompression and fuse my cervical spine together to support the weight of the "tripod" not his term but I can't remember what he called it. They would reposition my skull over my neck using the measurements they recorded from the traction the day before. This "tripod" would basically attached to the fused cervical spine and then attach to my skull to be kind of like a permanent support for my head, then they inject a protein compound in between the vertebrae to strengthen the bone. He said that I'd be staying at the hospital anywhere from 7-10 days post-op and my home recovery would be much longer than it was with the tethered cord surgery.

Needless to say I have not scheduled my surgery yet. Dr. Chan said to take some time to think about it and to come back when I'm ready. If my symptoms continue to get worse then I should come back in 3-6 months. I will add links with more information about the surgery. It makes me sick to my stomach think about it. I don't want to type it all out here. Dr. Chan gave me prescriptions for a non-invasive cervical traction with a chin strap and a Pronex traction device for home use to get me through the bad headaches.

On Saturday my father-in-law took me to a Chinese medicine man in Flushing, NY which is located in the Queens borough. Flushing is the "real" Chinatown, where the one in NYC is more of a tourist trap. It was the strangest experience of my life. We went into this brick building in a neighborhood that had graffiti all over the buildings. We went down a long hallway that had doors with Chinese writing on them, all of the doors had buzzers. The guy that answered the door had a patch over one eye. We went in, he saw Allen's aunt first and then it was my turn I sat down and he held onto my hands and started asking questions in Chinese which were all translated to me. Questions that were more like him guessing some of my medical problems, everything was right. He asked if I had a weak heart, I do have a slow heart rate due to POTS. He did a lot of stretching and pulling on me. He did a lot of stuff I had done on me when I went to a chiropractor years ago. I was somewhat uncomfortable with it. But I am also uncomfortable with cranial-cervical fusion so I am looking for other options. He also does acupuncture which is something I was hoping to have done that day. But he said my "chi" energy is too low. He said if he put needles into me he would release some of my energy and make me sicker. He would not do/recommend that I have acupuncture yet. He gave me some medicine to take which I was told by Allen is some herbs, it is all in Chinese so I have no-idea what it is I am taking. He wants me to soak my feet in hot water with ginger 2x a week, have Allen give me chi with back massage, and burn incense over my back during the winter to help circulate my chi. I am not sure if this is a cure all to my problems but looking at my other option it's worth a try.

Explanation of invasive cranial-cervical traction (to be done 1 day before surgery).
http://www.chiariconnectioninternational.com/Invasive%20Cervical%20Traction--Gardner-Wells%20Tongs.pdf

Here is a link of a Discovery Health Channel Special, the surgery the girl has in the special is the same surgery the doctors say I need to have. She also had her surgery done at The Chiari Institute.
http://www.chiaritvspecial.com/

Latest update

2007-09-05T13:11:00.000-04:00

Hi everyone,

It's Laurie, sorry it has taken me so long to post. The past few months since my surgery have been rough. Going into the surgery I had no idea the recovery was going to take so long. The doctors did tell me, but of course I thought I was going to be one of the ones to recover faster then the doctors expected. I want to thank Allen for filling everyone in on how I was doing when I wasn't able to.

One of the most terrible things that hasn't been mentioned yet is my withdrawals from the Oxycontin. When I saw my local neurologist, he switched me from Oxycontin to Vicodin. I was on Oxycontin for 30 days at a very high dose. That is what I was given post-op in NY to control my pain. I was not given any instructions on how I should reduce the dose other than "take less when you feel like you are able to take it." Two days after I switched over to Vicodin I was very sick and at first had no idea why. Think about every movie you have seen where you watch a drug addict go through withdrawal, that is what happened to me. The withdrawal lasted almost 1.5 weeks and only near the end of that 1.5 weeks did I start feeling normal again. Coming off of the Oxycontin was worse then my surgery. If any of you ever need to take this drug please do some research first and make sure you ask the doctors a LOT of questions.

The week of August 20th to August 27th, the boys and I flew from VA to IL to visit family. (Allen had to go to Italy for work.) Chase and Hunter helped me a great deal with the bags and with Connor in the airport and on the flight. I did ask for wheelchair assistance since I knew it would be a long walk to our gate and the security lines here in the DC area can take what seems like forever to get through. Chase pushed Connor in his stroller next to me in the wheelchair and Hunter carried our carry on bags. We had a nice visit with the family, although I did notice I was not able to do the things I was able to do in the past when I would visit. I am always so busy when I am there trying to make sure I get a chance to visit with everyone. This time I had to slow down. On the days I did too much the next day I was on the sofa in pain and tired. On the way home, again I asked for wheelchair assistance, this time the airport let my brother go back to the gate with us to help out with Connor and my carry ons.

Now that I'm home, I'll be going to physical therapy on a more regular basis, 2-3x per week. I am much happier with this place as opposed to the place I had gone for my first physical therapy session. I want to get stronger and get the area where I had surgery streched out. It still hurts when I walk up and down stairs, so that is one of the main things we are focusing on now is trying to loosen up that area that is still so sore. Along with balance training and corrective exercises.

I go back to The Chiari Institute in NY on Sept 28th for my post-op appointment. I have seen some health improvements after my tethered cord surgery. I have less headaches, and they are less severe when I do get them. I have not had one kidney infection since my surgery. The numbness and tingling in my legs and feet is not as bad. And the lower back pain is gone. Now I have a new type of lower back pain that is from the surgery. I have noticed some things have gotten worse since my surgery. I am having more POTS related symptoms, chest pains, heart racing, feeling dizzy. All of these can be from increased cranial cervical instability, which I'm worried about.
That will be something else I will be talking to the doctors at The Chiari Institute about. They will let me know if they think I should go ahead and have the cranial-cervical fusion. (That is the surgery the girl had in the Dicovery Health Channel post here on my blog). It scares the crap out of me to even think about having that surgery. I just don't think I could show up for that one.

I also want to thank everyone for the prayers and well wishes through my surgery and recovery time. It means a lot to me to know you are thinking of me.

Laurie's Fundraiser

2007-08-22T09:02:00.000-04:00

Hi everyone,

Please take a look at Laurie's Fundraiser information on the right.

Allen

1 month post - TCS surgery update

2007-07-20T09:09:00.000-04:00

Hey everyone,

Allen (Laurie's husband) here again, she's unable to sit at the computer for any length of time so it's hard for her to update the blog. Sorry that it has taken so long to update this but with all the things going on recently I just haven't had a chance to hop on here and collect my thoughts into a reasonably collected update so here goes, I'll go week by week.

Week of June 26 - July 2nd:
My mother and my sister came back from NY with us to help Laurie out around the house and to watch Connor. This turned out to be the right decision since this week she was still in a lot of pain and still using the walker/aspen collar even when walking around the house. We didn't realize post-op was going to be so tough and we were scrambling a while to try arrange travel for Laurie's mom to fly here from Illinois but in the end my sister volunteered to stay behind another week while my mom flew out on the 29th.

This week was hard for her because she would feel very dizzy from the slightest exertion but by the night of the 28th she felt well enough to walk around Target for a bit but after a while she started to get dizzy again.

Week of July 3rd to July 10th:
This week Laurie improved a lot over last week, we went out several times during the week to places like malls and other stores where she was able to walk around with her walker without too much of a problem and by the end she was just utilizing the stroller as her support. At home she had stopped using the aspen collar entirely as well as the walker and was beginning to do some light housekeeping (despite me telling her not to)!

On July 3rd we sent Dr. Bolognese a few pictures of Laurie's incision because we were concerned about how it appeared as well as Laurie had mentioned she felt almost like a trickling feeling below where the incision is. On the 4th of July (talk about commitment) he emailed us back to let us know that it was within the norm and to enjoy our 4th.

My sister flew out on the 7th and by this time Laurie felt like she could at least do the basics around the house and keep an eye on Connor. After I dropped my sister off at the airport I had to go up to do my Army Reserve Drill but was able to go home early on Sunday because Laurie wasn't feeling well.

July 10 to July 20th:
Laurie was doing a lot better from the 10th to the 14th but then it seemed like she was exhausted all the time and I became concerned that maybe something was happening.

On Wed. the 18th Laurie saw her neurologist and he recommended taking her off the oxycontin/oxycondone combo and to switch to vicodin for her pain. Also he recommended that since she has EDS to take less of the Flexerall (muscle relaxers) for same thing I had said! Even though he's not a Chiari expert it does seem like he has taken the time to do some research about the many subjects (Chiari, EDS and Tethered Cord) unlike Laurie's first neurologist.

Thursday the 19th was her first day with the vicodin and while Laurie was in more pain than while on the oxycontin she felt a lot more alert while on the vicodin.

Friday the 20th Laurie had her first physical therapy appointment, the PT we had wanted her to go was out of town until Mid-August so we went with the recommendation of her neurologist. Since it was the initial visit we shall see how this goes. Also Laurie upped her vicodin dosage a bit as per the neurologists suggestion due to the vicodin not helping as much as the oxycontin/oxycondone combo.

The Chiari Institute visit #2 (TC surgery) update

2007-06-22T18:42:00.001-04:00

Hi everyone this is Laurie's husband giving a quick update to those of you who may be wondering how Laurie's tethered cord surgery went.

6/18 - 4 pm at North Shore Hospital for some pre-surgery tests. Make sure when you get your blood done that you get it done exactly 30 days before the surgery date otherwise they will have to redo it like in Laurie's case, she had it done 31 days before.

6/19 - We were told to be at Same Day Admissions at 6:30 since her surgery was scheduled for 8:30. We sat there for almost an hour before they called us back for Laurie to change into her hospital gown and we were given a short briefing by a nurse. Be aware this nurse works at Same Day Admissions so they may not necessarily know what the specific surgery may entail. She told us Laurie would only be in the recovery room (Post Anesthesia Care Unit PACU) for 1-1.5 hours which contradicted what we were told from others that had the TCS surgery done here before. It ended up Laurie was in the PACU for almost 7 hours.

After Laurie was taken back to the operating room I went and sat in the surgical waiting room which was staffed by volunteers whose jobs I didn't envy. They basically had to keep track of who was waiting for whom and then alert the family when the surgery was almost over with a beeper (like one you get in a restaurant). The PACU only calls for patients every hour on the half. Meaning if you weren't called down for the 1:30 pm visit, you know you have at earliest 2:30 pm. During this time you can go to the cafeteria or deli but I typically stayed in the room otherwise.

At 1 pm I was about to ask the volunteer if she had heard anything when I saw Dr. Bolognese and Dr. Milhorat walk through the door. At first what went through my mind was something like "oh crap...why are they both here!" but it turns out Lauries surgery had no complications.

Below is roughly paraphrased what Dr. Milhorat told me:
"First we did the doppler to check the fluid flow and found in your wifes lumbar area there was virtually no spinal fluid flow. Then we did the nerve mapping in which we tested each nerve and then we moved the nerve bundle and cut the fillum which was very tethered, all her lower body symptoms indicated a TC. There was no nerve damage done at all, except the damage that pre-existed from an epidural which was wrongly administered (from the birth of the 8 year old). Now my only concern is the cranial settling that we are seeing occur due to her hypermobility syndrome (I almost said we had seen Dr. Francomano,but figured they already knew this). It's like if you take a stick and put it into a pumpkin and then put the stick upright, the pumpkin will sink down a bit. The TCS surgery should eliminate a lot of the lower body symptoms (i.e. numbness, lower back pain, tingling) but we won't know for sure how much an effect the cranial settling will have.

At this point I thanked Dr. Milhorat and Dr. Bolognese and went back into the waiting room for my call down to the PACU. A note, the PACU visit is only for up to 2 people and they didn't recommend that children come back there. I didn't get that call until the 3:30 time and was very dismayed when I saw her, the expression of pain on Laurie's face was almost too much to bear. Laurie told me her back hurt so bad and as soon as she came out of the general anesthetic she was crying because the pain was so bad. They had put her on a morphine drip but she had maxed out her dosage already (they give you a button to push). Laurie also said the numbness in her feet was a lot worse. While I was there 2 physician assistants (Monica and Denise) that help Dr. Bolognese and Dr. Milhorat came by to check on her. Denise Macksel was the P.A. that led Laurie through various tests for lower body strength and such, I thought she was kind of brusque at first but then it seemed like she really cared whether or not Laurie was really pushing her hardest. She said:

"When people come by you really have to try to push with as much strength as you can, no matter how much it hurts because if you are really unable to push that is a problem, but if you are able to push and there is pain that is normal."

Denise explained to Laurie that she could try something other than morphine for the pain but it is a lot stronger and it would dope her up and possibly relax her body too much. Laurie said she would try it but it ended up making her really nauseous.

At this point one of the nurses in the PACU gave me a card and said to call to find out when they are moving her to a the Neurological ICU floor.

At around 7:00 I got a call from the PACU telling me they would be moving Laurie around 7:30 to her room and we would be welcome to see her.

6/20 - I visited Laurie several times they still had her on morhphine for the pain and she was unable to walk yet, her legs still felt weak. The visits were brief since it rapidly would become too noisy with all the kids there.

6/21 - What a difference a half day makes. Between when I saw her around noon and when I saw her later that night her whole appearance had changed for the better. Laurie was moving her legs more and had even gotten to walk a bit with the physical therapist. The doctors thought she might be able to go home on Saturday.

6/22 - More visits, while not pain free they had removed the morphine and started her on percoset and oxycontin. Due to her increased dizziness and low blood pressure they didn't think Saturday was going to be doable for a release date. They attributed this to an increased cranio-cervical instability. Dr. Bolognese measured Laurie's pulse when pulling up on her head and when pressing down. The pressing down measurements were worse. Though they had not been giving Laurie atenolol (medication to manage the POTS symptoms/dizziness) due to her low blood pressure. They decided that whenever Laurie got out of bed she would have to wear a cervical collar, an IV for hydration was needed, knee high compression stockings and Laurie would start taking the atenolol again. There was a brief mention of possibly having the craniocervical fusion surgery as soon as 5-6 weeks. This really freaked Laurie and myself out and she made a redoubled effort to get better and out of the hospital.

6/23 - The dizziness seemed to be a lot better today possibly from the atenolol or the compression stockings or what? The percoset/oxycontin combination still don't seem to be helping manage her pain very well but they keep saying to give the percoset more time to work. Right....so she will just suffer and wait for the percoset to kick in?? Monica the P.A. said that they would like to keep Laurie there until Monday due to the fact that only 1 doctor from the Chiari Institute will be availible on Sunday to take a look at Laurie.

6/24- Today on a visit I kind of came up with a possible reason of her increased dizziness. My reasoning:
1. Dr. Francomano had said that with a classical EDS patient their muscles have to work much harder to keep the ligaments/tendons in the right places.
2. Post surgery they have Laurie on muscle relaxants to help with the back spasms/pain.
3. Being on the muscle relaxants for an EDS patient will increase their craniocervical instability due to the musculature not supporting the head as well as usual.

Seems to make sense to me?

6/25- She's released! I get a call at around 10 am and Laurie is free to go home! They would like her to stay in the area for another 24 hours, but she can go back to Virginia if she would like. Laurie wants to go back to VA rather than stay at my parents house another day due to the many stairs in my parents house. I know the car ride is miserable for her and it was a very very long car ride. It's suppose to take ~5 hours but last night it took 8+ hours due to accidents in NY and MD. I think I was complaining more than Laurie was by the end.

Chiari Special On Discovery Health Channel

2007-06-11T21:58:00.000-04:00

The neurosurgeons in this special will be performing my surgery in June. I have been diagnosed with many of the same conditions as the girl in the special. I am scheduled for my Tethered cord surgery on June 19th. I will be going back to TCI, 3 months after this surgery, after I have had time to heal, to talk about having the same surgeries the girl had in this special.
http://www.chiaritvspecial.com/

Funds for Chiari and Syringomyelia Petition

2007-06-10T10:19:00.000-04:00

Please sign this petition for Chiari and Syringomyelia, lets get more funds for these disorders.

http://www.chiari-syringo-news.com/subs%20only/Volume%202/Issue%202(10)/Disease%20and%20Marriage%202(10).asp

Ehlers-Danlos Memorial Tribute

2007-06-09T17:34:00.000-04:00

I found this memorial on You Tube and just had to post it. I know more people that are not family and friends are checking out my page. I am so glad I am able to provide those of you looking for answers a place to find some.

Ehlers-Danlos Syndrome Update

2007-06-07T12:50:00.000-04:00

I was seen by Dr. Francomano on Tuesday, June 5th. She confirmed that I do have Ehlers-Danlos Syndrome (EDS). This was suspected by The Chiari Institue (TCI) on Long Island NY. Dr. Francomano diagnosed me with Classical Type (EDS), I am adding links with more information, as it is way too much for me to try to explain.

She told me, as I have read, and was told at TCI, that the medical experts are now finding a link between EDS, Chiari, Tethered Cord, and Retroflex Odontiod (all conditions that I do have). The EDS diagnosis also explains my joint pain as the joints are connective tissues. So are the tendons and blood vessels. She said my muscles are trying to do the job the connective tissues are suppose to do for the body and that would explain why I'm always so tired.

It was so nice seeing a doctor that listened and understood what I've been going through. My appointment with Dr. Francomano lasted 3 hours, in that 3 hours I got more questions answered from her about my conditions then I have since all of this began in August. I could go on all day about my appointment but I wont. I'm sure it will all just run together and not make much sense anyway. I hope you all take the time to check out the links.

My Health Conditions

2007-05-25T13:35:00.000-04:00

During the past 8 months I have been diagnosed with many different conditions. I have told many of you different long names that you have never heard of, here I will refresh your memory on the names of the conditions, and when I was diagnosed.

The Initial Diagnosis:
My close friends and family know that my entire life I have had aches and pains that were never explained by any doctor. As a child I was told I had growing pains and migraine headaches. As an adult I had many tests done on me for various complaints.

The Postural Orthostatic Tachycardia Syndrome (POTS) :
In August 2006 my symptoms became much worse and were daily and could not be ignored so the tests began again. In Sept 2006 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). This was causing my blood pressure to drop and my heart would start racing to get the blood pumping, I would get dizzy and almost faint, this would happen almost everytime I would stand. I was diagnosed with POTS and started taking medication and I thought I was on my way to getting better.

The Syringomyelia:
My doctor wanted to run more test because of some back pain I was having. In October 2006 I was told I had a syrinx (a fluid filled cyst in the spinal cord) also know as syringomyelia, in my thoracic spinal cord from T-5-T-11. My neurologist sent me to a neurosurgeon for this.

The Chiari Malformation:
The neurosurgeon said there had to be a cause for the syrinx, and he ordered a cine MRI. The MRI found a Arnold-Chiari 1 Malformation (ACM 1), meaning my brain is herniating out of my skull. The neurosurgeon spent a few minutes telling me how he could open up my skull and take some bone and that would allow more room for my brain, he would also cut open the covering of my brain , this seemed like it was no big deal to him. I was ready to get out of there. I'm glad he only had a few minutes for me.

The Chiari Institute, tethered cord, retroflexed odontoid, Ehlers-Danlos Syndrome, and Cranial-cervical instability (CCI)
I came home and found some info on the internet and found The Chiari Institute (TCI) on Long Island, NY. After doing some research, I decided it was the place I wanted to go for informaton. They have patients from all over the world, after a long wait I was seen for my consultation in April 2007. I was told there that I have Tethered Cord Syndrome (TCS), my spinal cord is being pulled down at the bottom, its not floating free like it should be. That caused a lot of the pain I had in my legs growing up. The syrinx, (cyst in my spinal cord) is most likely caused from the tethered cord. I have herniated disks at T-8-T-9. My bladder problems and kidney infections are probably caused from all of this in the lower spine area.Dr. Bolognese, the neurosurgeon at TCI thinks the Chiari is being caused by the tethered cord, meaning my spinal cord is tethered down so tight its pulling my brain out of my skull. Cranial-cervical instability (CCI), Dr. B said where my head and neck join is wobbly, like a bobble head. I have to wear a neck collar on long car rides now. I was also told I have a retroflex odontoid, meaning my second vertabrate in my neck does not stick straight up to hold up my head, it bends back and pushes into my brainstem, that is causing those (POTS) symptoms. I was also diagnosed with Ehlers-Danlos Syndrome(EDS) at TCI and I am seeing a geneticist in Baltimore MD on June 5th. I will give more info after that appt.

Post TCI:
Since I have been back from TCI I have been diagnosed with early onset-arthritis and tendonitis which I have found out is common in people with EDS. And I am having spinal cord surgery June 19th at The Chiari Institute in NY, to realease the tethered cord. All of these conditions are considered rare so its tough trying to explain something that most people have never heard of, and since it is of the brain and spinal cord it affects my whole body. So I have a lot going on. I am in constant pain. I have been turned away by a pain managment doctor, I have tons of doctors appointments, I have been seen by 15 different doctors since this started, some weeks I have had an appointment everyday, some days I have two, the bills are piling up. It's all just so overwhelming. When all of my friends and family ask, I do want to share, but it has become all I talk about because it is all so hard to explain. I thought this would be an easier way to share.