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AVM Survivors Network

Spinal avm

New to this site. My story. In the mid 90’s I’ve noticed myself tripping over my own feet alot. Started out as a feeling of a pulled hamstring in my right leg. Go to the doctors , told I pulled a muscle and they sent me to therapy. It never got better, only worse. Started losing feeling in my legs and bodily functions. Took some time and lots of long MRI tests to finally find a spinal avm in the T 8 area of my spinal cord. I think I had surgery in 97 or 98 and the surgeon inserted surgical clips before and after the avm to obviously stop it from growing. Back then there wasn’t really any way to research info about it or know other people’s experiences with it. It’s been just about 21 years since then and the mucsule and nerves that was supplied by the area that was clamped to stop my avm have progressively gotten weaker over time. I dont have alot of feeling in my right hamstring area and my right inner calf muscle is almost gone and because of this the other side over compensates and has caused my foot to arc and my toes to curl (hammer claw) and are now fused permanently curled. One side of my back is obviously more muscular than the other side and causes back pain and weakness. I do still work and provide for my family but ofter wonder how long before I cant and need to go on disability. Just wondering if there is anyone else who have had a spinal avm and the long term disability caused from it?

Hey! Yes, I ended up on long term disability. My AVM was on T9 to L1. The AVM was tightly wrapped around my spinal cord - doctor said he got it all but I still suffer from the damage. As with you, I had so many problems and it was always dismissed as something else. I’m so grateful to one doctor that actually looked at areas and was determined to find the cause - he was amazing. But the damage was done. I’m grateful he found it and the neurosurgeon was able to work God’s miracles. But my thinking for so long was that I would get better and things would start working again - I would have never thought I would stop working in a million years - I loved working and thought I would work until I was 90. It took me awhile to accept not being able to work but I did apply for SSID and got it on my first attempt - best thing I did for myself. So my answer to you is, apply when you’re ready - they will look up all your records, etc. Of course, the money on SSID is not much and I’ve had to change my spending habits but as I grow older, I realize I don’t need all the stuff I thought I did Lololol. Wishing you the best. Vickir

A warm welcome to AVM Survivors Network, @Driver1980! It must be hard working and providing for your family while suffering from pain. On this site, we give support and get support too! I’m glad that you finally found this community and I’m sure that other members will always be willing to help. I browsed some threads about spinal AVM Newly Diagnosed Spinal AVM and I hope something in here helps. The search icon (top right) is where you can find particular topics you are looking for. You may also share your own story and start your own discussion thread, the “guide” tab in green at the top of the page is a great help!

@ModSupport