Hi spchemistry. I was diagnosed with a spinal cord herniation at t7 just within last month. I have had issues going on for several years now and they finally have pinpointed it. I too am scared being this is so very rare. I have progressively been getting worse over the last few months.
Let me give you a little background on my symptoms:

I am 38 and up until about 2 years was extremely healthy. I have been struggling with walking for several months now. There are some days that I just don't know how I do it! My pain originates in my lower back, but radiates down legs making them feel like 1000 lbs. It is like a stabbing, throbbing,muscle twisting, knot that is pretty much constant. It takes everything I have to lift my legs some days. Usually the mornings are pretty good, but once I am moving more than 5 minutes I am in pain. Sometimes, I have uncontrollable spasming in my right leg, which may last up to an hour. There has been a few times when my legs just completely lock up and I can't go anywhere!

My pain started being an annoying pain early 2012, but not constant. Started going to chiropractor, which did not help after months of visits I was worse than what I started. Seen my PCP. He did xrays, MRI of lower spine. Did 4 months of physical therapy. Seen rheumotolgists to rule out Fibromylgia, MS, Lupus. Blood tests all good, except for my CRP level was extremely elevated. Other than that they found nothing. PCP then suggested neurologist. Seen neurologist and he wanted thoracic MRI done. It showed that I have Spinal cord herniation at T7. So I needed to see neurosurgeon. The first neurosurgeon said... You need a specialist for this one, beyond my specialty. What the heck? So, I seen another neurosurgeon who is suppose to one of top docs in MO. He had me do a myelogram. It showed, no cyst, but did see abnormalities suggesting a herniation. He said that I do not present enough symptoms at this time to do surgery. He wants me to come back in 6 months to see if symptoms progress. Really??? That's January 2014. I am in constant pain, my quality of life sucks because I can not do anything. The little things can put in bed the remainder of the day. I am pretty much wheelchair bound or couch/bed bound in the late afternoon on most days.

After seeing this last doc and getting the impression that this is something that is a huge risk for them. I am looking into Mayo clinic and maybe will get more answers there. I am afraid that if not fixed soon, I could become paralyzed regardless.

Scared. Stressed. With just a little over 100 cases diagnosed, I am interested in talking with others regarding their symptoms, experience etc.