update to the update- as I was going through rehab for this Transverse Myelitis, I had a massive relapse one day and lost lots of leg mobility overnight. I went back to northwestern memorial in Chicago and they again started the same repetition of treatment they provided before. Their goal was to then get me back to rehab. I knew that wasn’t the answer here and had frankly lost all trust in Northwestern Memorial- I asked to be transferred to Mayo clinic. Northwestern refused, outright argued with me that it couldn’t be done, finally they got me there. Within two days Mayo did what Northwestern couldn’t in over 2 months- find my real diagnosis. A Dural AV Fistula located in the thoracic area, t3/t4. I had spinal cord surgery to remove it. Now the question becomes if I will be able to walk again, will the bleeding that’s already been done create perm damage or short term? I hope to be back in rehab very soon starting the road back to normality. I really want to thank Dr. Lanzino and Dr. Burrows at May and a special thank you to Dr. Kauffman who actually found the fistula (despite Northwestern not having located it in two angiograms).
I found I did better when I concentrated on the positive side of things. It helped me deal with the short deck of cards I had. As I write this, I begin to think I should listen to myself. I've been stuck in a depression for awhile and it's time to pull out. Sometimes, it hardest to take my own advice.
Let me know how you are Armand. I am doing better and although still in a wheelchair, i am getting stronger and continue learning to walk and stand (with walker). hope you are well.
Hi George, hope you are doing well. I don’t get here as often as I used to, so sorry so long to reply. I hope you are doing well with the walker and seeing more improvement! My AVMs were at T10/T12 and L1/L2, all of my problems are below my waist as well with more problems with my right side. Winter is making me crazy because I can’t get outside and walk around the yard like spring and summer and missing the sun. Have you ever looked into getting a rollator? It’s a rolling walker with a seat for when you get tired. You can find them on Amazon for about $150 and for me it has been money well spent. I got the one with footrests and a pushbar so others can roll me around if I get too tired. Best wishes for continued improvement and stay in touch! Andrew