New Diagnosis

I saw the super-duper fancy-pants neuro-surgeon today and he was awesome. He looked at all the evidence and said that I'm a "fringe case" meaning that all the facts don't add up very well. He said in these circumstances he looks for something more rare. He guessed I may have Tethered Spinal Cord Syndrome. He then flipped through the layers of my MRI and low and behold - there it was. My spinal cord extends a good four inches beyond where normal cords stop. It's a deformity closely linked to Spina Bifida and nowadays it's the sort of thing an OB would look for in an ultrasound.

Since it wasn't treated at birth I have adult-onset symptoms. Typically a person rapidly goes from having some pain to completely debilitating pain. The next stage is even worse, you lose bowel and bladder control and then you have total loss of feeling and paralysis. Fortunately I'm not there yet. The other symptoms are things I've dealt with my whole life. It's funny to think back to health problems I had in third grade in light of this rare disorder. It's odd to have lived with poor health as long as I can remember and now see how TSCS was the cause of a lot of it.

On January 22, 2010 (Friday) I'll be admitted and the doctor will perform a laminotomy in my mid-back. Here's a picture of a vertebrae - he's cutting off the front triangle piece (the lamina). Then he'll dig a trench down along the spinal cord cover, cut through it at the appropriate part and insert a microscope in my spinal cord. At some point he'll inject a powerful coagulant hardening that spot on my spinal cord and then he'll sever it. That will "untether" my spinal cord and should resolve my issues.

I have to lie perfectly flat for 36-48 hours and then I'll have two more days in the hospital getting back on my feet. After that I can come home on Tuesday and I'll have to rest for two weeks. Then I'll have no doctor directed restrictions - basically I can do whatever I feel up to doing.

This is a wildly different recovery than the year of healing with the coccygectomy. It's also a much scarier "bigger" procedure. Dr. Awesome has done fifteen in the last three years and has been asked to write a paper on it. He's definitely the guy to go to. He's very comfortable with this surgery and was glad to find this rare disorder that puts all the puzzle pieces together.

As for my two broken bones - both are old breaks and they have healed reasonably well with no spurs or arthritis. He thinks removing the coccyx would be a poor choice and may have made things worse.

Thanks everyone for the prayers. I am excited and terrified about going forward with this. Severing my spinal cord sounds like something you avoid, not something you make an appointment for *grin*

Wishing you all a very Merry Christmas :-)