Hello everyone. I hope you feel reasonably well today, considering our circumstances of health!

It took me a while how to spell these disease names and I hope I got it right. I got some real practice filling out disability forms.

I have been suffering from burning feet with coldness for a number of years and I also had a bad lumbar with severe pain bouts and leg pain. It was believed that the burning etc. came from my low back but also it was mentioned that I had too much neurological trouble. A thorough workup let to the conclusion that something must also be going on higher up so in 07 a C and T spine mri was ordered. This showed a syrinx reaching from T1 to T11 (!) it is very long but about 3 to 4 mm in size. Also i had discs sticking into the spinal chord at c3/4/5. As I have numbness troubles in my hands and arms and often very much aggravated by neck movement it was decided that my problems come from there not the syrinx but some opinions seem to think that the problem in my c spine was not big enough for that surgery. I underwent the much needed lumbar (anterior fusion and ADR) surgery which improved the pain and somewhat changed my feet sensations and then 2 years later I had a 2 level c spine surgery with artificial discs. First it was a little better and still am in some ways (much less head aches) but I have been deteriorating since. The syrinx seems to not have changed all that much, the regular MRI shows. A neurologist wrote that I should have re operation of my c spine with a 4 or 5 level fusion as I was at high risk for serious trouble with my c spine, minor whiplash = wheelchair due to a "severe lordosis" (back curvature) that is also seen on the MRI. The very experienced c spine surgeon insists that My c spine is in good order now with no stenosis on the spinal chord and I don't need a reoperation but should look decompression of the syrinx. This is where I am now. The one syrinx Dr. says there are too many risks...

I do not have Chiari. It is unknown where the syrinx came from, other then birth defect. To put a stent in it is considered very risky and as it is of a small diameter, hard to operate with a risk of repeated surgeries or even and emergency condition if the stent falls out.

Symptoms: When I lie down, little or none. When I rest my neck against my lazy boy, little.

When get up and start moving I get burning feet, sensations of ice cold. As I start moving my neck it all gets much worse. The burning nail board sensations start showing up in my hands to a lesser degree and the ice cold sensations have climbed up into my legs this last year. When cool air blows on front of my legs it feels like lying on ice. If I look down and keep my head extended looking down (like at the computer keyboard) then the ice turns to nails and burn and I get "hot flashes" originating around my T sine area that feel like the aurora in Alaska, moving around my body, coming and going. I also get sapping pains into my feet at times, these are severe but short. when I put my neck into a hard collar and walk around like that I have less problems but moving about I still have some problems, when I take the collar of its a return double, it seems. Those hard collars tense up my muscles and are really painful. I also was diagnosed with ataxia and the German doctors were ready to put me on instant disability in 07 but I am in US of A where these things are much harder but I can not work as i get severe pain if I push it so I have to stop what ever after half hour or so and need lots of breaks. It seems the Dr's don't know what to do with me with dramatically different ideas but I rather not have a 5 level fusion if all comes from the syrinx even if it seems to be too low in my spine to be causing any problems into my arms!

I am on a high dose of lyrica, and Lorazepam. The Neurologist told me this is it for meds. I do take lots of ibuprofen and have morphine pills for when it gets real bad. Sometime the pain radiates from my mid spine into my lower torso and it is really had, like my organs are going to fall out. Severe, cold sweat pain. Hold really still and take something. ER type pain. If it happens while not close to home no fun so I am afraid to travel alone but having the strong meds for an emergency pain situation really helps lower my anxiety, which I have lots of.

Anyone have something similar, Syringomyelia with myleopathy type symptoms. (Everything else repeatedly ruled out)?

Anyone know a specialist of this type in San Francisco or Northern California?