Since I published my post about my experience believing that I had ALS only to find that there was a possible alternative diagnosis, I have received an outpouring of support. Not only from friends and colleagues with whom I have been in recent contact with, but also from old friends, my University of Toronto 1T0 classmates, and even high school classmates with whom I have not spoken to in years. I really appreciate the thoughts and hope people have been sending my way. And now there is more reason to hope than ever.
As you may know, I was admitted to the Neurology Service this week. A dynamic subtraction myelogram was performed yersterday. It showed a fast CSF leak at T11. This is great news because it means that there is a potential surgical target. Presumably this CSF leak at T11 has been causing the longtitudinally extensive ventral CSF extradural collection that has been either intermittently or continuously damaging my ventral cord and nerve roots in the cervical region (even though the CSF is coming from a dural tear in the thoracic spine). There was also some calcification in my T11-T12 disc on the CT and myelogram images suggestive of a remote traumatic disc herniation which probably caused the dural tear in the first place. This was likely caused by my snowboarding crash in 2005.
Today I was seen by the Neurosurgery spine service. We discussed my case and imaging in detail and I have consented to a T11/T12 laminectomy and anterior dural repair. Thankfully this means a posterior approach. I had been worried about the possibility of requiring an anterior cord surgery. The dura will be opened and the cord will be rotated such that a “carpet” of synthetic Vicryl dura can be manipulated around to the ventral aspect of the cord and sutured into place to repair the anterior dural defect. There is a chance that a thoracic nerve root will have to be sacrificed, but I will gladly take a numb patch on my abdomen after what I have been contemplating. A lumbar drain will be left in place initially. I will have to lie flat for at least 3 days post-operatively. What my total recovery time will be or whether I ever get my strength back are open questions.
It may seem a bit extraordinary that the prospect of spine surgery is so calming for me, but it is. It means there is hope. Sure there are risks to spine surgery, especially with manipulation of the cord, but the prospect of preventing further decline and possibly even reversing my weakness is something to rejoice at. I am overjoyed to have hope once again. I feel like I have been granted a second shot at life.
Thank you all for your support during this time. “To Life”.
Right: My dad shot a cell phone photo of me on unit 111 just before I was taken down to the angio suite for my myelogram. Left: I imagine that if I were to sneak a wee dram of Scotch somewhere where I shouldn’t, it would probably be best if it weren’t called “Peat Monster” which I imagine would have a distinctive aroma that would waft great distances.