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.

Doctors, Doctors, and More Doctors

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

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

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

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

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