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Pilgramage to the Chiari Institute

Posted Sep 07 2008 8:01pm


I went to The Chiari Institute this Summer for a consultation with Dr. Bolognese. I get asked all the time "Was it worth it?" YES, YES, YES!!!! Worth every dollar and everyone of the 3000miles.

I really did try to get help in Canada. I tried for 18months. I saw 2 neurosurgeons and 2 neurologist up here as well as a rheumatologist, neuro-ophtamologist and physiatrist. I think Canada does a wonderful job of providing health care for its citizens over all. If you have a well recognized disorder, there is no better place to be.

But if you are lucky enough to have something unknown, little known or rare it is very difficult. If you have a uncomplicated chiari malformation then I think it is possible to get good care here. But if you are like me and have diagnoses which are considered contraversial then at present you have no choice but to go to the US. After I did the rounds of docs up here I was told that my syrinx was too small to be causing my symptoms, they didn't know what was causing them and that I should come back when I couldn't walk.

This was not good enough for me. So at the end of June my husband and I flew to New York for our consultation at TCI (The Chiari Institute). I was able to have all my diagnostic testing done at home before I went down (MRI, CT and x-rays) the only thing that I had to have done there was my CINE-MRI as this is only in use on an experimental basis here at UBC. The diagnostic testing is done the day before. We had the CINE MRI done on the Friday and then spent the weekend sight seeing around NY. The CINE MRI was $500 and the consult was $1250.

On Monday we went in at 8:00 did our paperwork and then saw the Nurse Practitioner first. She was extremely nice and knowledgable. She took my vital signs and asked A LOT of questions which are entered into the computer and used to screen you for various things. Following this we had a brief wait and then saw the Neurologist. This included a basic Neuro exam and then some more questions. This was a bit of a disappointment as it was no different from the NL appointments I have had at home.

After lunch we finally met with Dr. Bolognese. He is very down to earth, brilliant and extremely funny. He uses humor to put you at ease and also to demonstrate his point. The first thing he did with me was push on the top of my head (quite hard). I got intense neck pain, excruitiating headache, blurred vision and "twinkly light" and could not swallow. Next he pulled up on my head. The world was good again! I could swallow, my vision cleared and my neck and head stopped pounding. Thru this test he determined that I have cranial settling. There is too much "play" or "slack" in the ligaments in the craniocervical junction and b/c of this my skull slumps down onto C1 putting pressure on my brainstem and cranial nerves. I have cranial settling b/c I have had 3 pretty major traumas to my head and neck and it also seems very likely I have EDS.

Next Dr. B had me toe walk and heel walk to screen me for tethered cord. I don't really get symptomatic with these tests but I do have a long standing problem with lower back pain, I have started to get bladder symptoms and I get a lot of numbness and tingling in my legs and groin as well as muscle spasms in my legs. Dr B feels that all these symptoms point to Occult Tethered Cord. This is most likely what has caused my syrinx too. The constant traction or pulling from the bottom has caused the syrinx to form. Further evidence of this is the fact that my brain stem is elongated. Normal is 48-53mm, mine measures 58mm.

Although I do not have Chiari by the old standard of the magic line at 5mm I do have a small posterior fossa and obvious crowding behind my cerebellum on MRI. My tonsils are right at the foramen when they should be 3-5mm above leaving adequete space for CSF to flow. Further adding to this problem is the traction below from the TC. Also, b/c of the cranial settling my big problem is when I stand-up. This is when I am most symptomatic due to the slumping of my skull. There is no telling where my tonsils end up when I am upright as all my MRI are done laying down. I always feel really good laying down. I have for as long as I can remember. It is only when I stand up that I start to feel unwell. I know though that I have it mild compared to some. Dr. B states that some have cranial settling so severe that they can only be upright for 30 minutes.

So the bottom line is that I have Chiari 0, OTC, cranial settling, ?EDS, and SM. I need two surgeries. Tethered cord release surgery first. I need to have this before my bladder symptoms become much worse and are permanent. The TC release may also decompress my syrinx and improve things at the cranio cervical junction. This surgery is "relatively" simple to do and Dr. B encouraged me to try and find a Canadian NS that will do it for me to save me some money. That is what I think is so great about him. If he was in it for the money he would never say that. He truly wants to help us get well again. Unfortunately, Occult Tethered Cord is not recognized in Canada and no NS will perform the surgery. I am hoping TCI will release some of its data on OTC soon so I can try and change the current thinking in Canada.

Eventually I will need a cranio cervical fusion where my skull will be fixed in place by fusing it to my top 5 vertebra. This will keep it from slumping down when I am upright. This is pretty major surgery and will have to be done at TCI. So this is what I am looking at in the future. I am currently gathering data and seeing more specialist up here to try and get some more ammunition so that I can lobby the provincial gov't to fund me to go to TCI for surgery. I hope it will be soon.....
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