Hello all, I posted my story last month or so about rare form of AVM's. None in the brain but numerous types throughout the rest of my body. While I am classified under Cloves Syndrome that is just the closest one that fit's. Just had another round of MRI's of the pelvic, lumbar and thoratic regions. I have been steadly losing strength and feeling in my legs and feet over the last couple years. The MRI's reveald more bleeds into the spinal cord (had a few) and now the AVM's are going between some vertebra into the spinal cord in various S, L and T regions. It also appears as the nerves exit the pelvic area they are intangled in the AVM's. Kind of knew it was coming just was hoping it take longer but I'm 53 and it could have happened earlier. UT Medical in Houston and Boston Childrens Vascular teams are reviewing and hope to get some ideas in a couple of weeks. Already ready scheduled for some sclerotherapy procedures for early May and insertion of coils in a large AVM conected to heart and lungs to prevent blood clots from reaching them. Enjoy life, do all you can and good luck to us all!
I'm sorry to hear about your spine, To Many to Count. Did you talk to Boston about Sirolimus yet? I would like to see if it might cause some of those avms to regress for you. I would also suggest you get an opinion from Robert Spetzler at Barrow in AZ about your spine, as he is the very best for spinal avms.
I will keep looking out for information for you, and pass along anything I find that might be helpful. Best wishes to you!