Re: AVF/AVF in Spine - does anyone here have this?
THanks, Feelbad - I actually posted in the spinal cord disorders page, but wanted to change my post name (I didn't realize you couldn't hide your user name & my old one is not good to use...since it is my actual name). I've done a lot of research, and have copies of all of my MRI films and reports, but the one thing I can't find anywhere is someone telling me what their progressive symptoms are. I can find scientific/nuerological reports and literature, but this is coming from the DR, not the patient, and I want to hear from other people with this type of condition. I know what I am feeling, but I don't always know how to describe it, it doesn't seem so cut and dry as the medical profession would like for it to be. Like, am I really feeling muscle weakness? What did it feel like to other people? Did you or anyone else have the cramps, aches, numb-but-not feelings? Did you have back pain; if so what was it like? Those kind of things.
To answer your question, my lesion is in the dura matter and has caused flow voids and a swollen conus medullaris (sp). To date, no bowel or bladder disfunction, but my reg. doctor is worried about that. It feels just a little spooky to go through this without knowing just how fast these symptoms will progress, if at all, since it seemed to be such a sudden onset. Do they even have a chance of going away? I guess it's not as bad as having it directly effect my conus equina, but whatever. My MRI's show flow voids in my thoracic spine above where the obvious lesion is at T-12, so I don't know exactly what that means just yet. I haven't found any literature on that just yet, but I'm still searching.
Any kind of description of your symptoms & progression would be wonderful to me, though - how fast everything happened, the time between diagnosis and surgery, etc. Thanks a bunch for replying, Marcia!!!