I was making great recovery with strength and sensation until this weekend (11 weeks post-op for AVF clip). I am back in the hospital for a relapse in sensation loss in my legs and feet. Spinal angiogram was negative and MRI revealed nothing new, just residual inflammation. My strength remains good. Doctors seem puzzled in the improvement and now sudden “relapse” with no new findings. Anyone experience this?
I just posted last night about my own lack of recovery and some relapse after removal of fistula. My doctors don’t have answers but focus on muscle spasticity. I however can’t tolerate increased dosage of baclofen that helps to relax muscles. Seems like something more than that but I don’t yet know.
Tara, I was so happy to hear how well you were doing and so sorry you're back in the hospital! I wish I could give some answers to what you are going through. Glad the angio and MRI didn't show anything, the last thing you want to hear is that there is anything left of the fistula or that they find a 2nd one..you know I've been there.
The best I can offer is to say...DO NOT GET DISCOURAGED. You have been through a major surgery and your body is still adjusting. Sometimes along the way, the brain and body don't communicate like they should. One day you can feel great and the next not be able to stand or have some pain or numbness that wasn't there before. Then it can just go away. I know it seems like you have been through hell and back, but in time you will find out what residual affects you will experience, whether temporary or permanent for the rest of your life. And you will handle them :)
Please keep us posted, we are here!
Thanks so much for the reply Andrew. Unfortunately, my luck may be as bad as yours was a few years ago. I have been diagnosed with a rare autoimmune disorder separate from the AVF discovered in September. Doctors think that the AVF stress to my body brought out the autoimmune response and disorder. Currently on high dose steroids and hoping for some relief from this acute attack.
Just crazy. But I do continue to consider myself lucky; I am still walking. And no surgery! Thanks for the positive thoughts and encouragement!