Thursday, April 28, 2011

ASAP Walk and Roll

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.

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

Wednesday, July 7, 2010


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

Tuesday, May 18, 2010


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.

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

Monday, May 3, 2010

Chiari Malfomation to be featured on House

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

Preview to tonight's show

Sunday, January 24, 2010

Still Here

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.

Thursday, October 29, 2009

MRI Results

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.