I am new to this forum. I was so excited when I found this website.
I just wanted to share my story with AVM and gain some feedbacks or tips which could be helpful for me know.
Diagnose:
I am 22 years old and two years ago I was diagnosed with arteriovenous malformation of cerebral vessels (CODE: Q28.2). I have an arteriovenous malformation in my spinal cord (vertebrae column Th5-Th7). Myelopathy.
Surgery:
My surgery was completed 2 years ago.
Type of surgery: Endovascular (total) embolization or occlusion of head and neck vessels (Code: 39.72).
Symptoms:
One of the main symptoms I’ve experienced is muscle atrophy (in particular my right leg was a bit atrophied and looked skinnier than my left leg) + foot drop.
I wouldn’t say I’ve been getting progressively worse after the surgery, but I haven’t seen any progress so far. I do experience a few other symptoms such as memory issues, coordination, concentration problems, but I don’t know exactly if I have these symptoms because of my pathology.
I’ve noticed that every time when I walk I start limping because of my right leg. Only a few years ago, I would be able to play different kinds of sports but currently, it’s even harder for me to run because of the muscle weakness.
Currently, I don’t know what I am supposed to do with this pathology. I would appreciate all your responses and I hope I will find something valuable from your feedbacks.
Welcome to our community! It’s great you found us, and I sure hope we ca be of some help. My AVM was left temporal, found due to haemorrhage, gamma knife and now AVM free but another follow up in 7 months to have a check in. Our cases are quite different but we have a great variety of experiences here. You should check out the Spinal AVM group as well, although we are all connected here. Really easy to hit the magnifying glass on he top right to search. A few ways to get there but for me I find that easy. I hope we can help, and once again welcome! Take Care, John.
hello and thank you for sharing your experiences,
I am almost a photocopy of your situation. T7 avm diagnosed and operated 2 and half years ago. I also suffer from all the symptoms you have mentioned, especially leg drop and coordination. I am not in a position to give you a remedy as I sort of learnt how to live with the issues.
I had L1 to T12 and the result of the removal was paralysis. But I am now walking after 4 years of therapy. I used a side alternating vibration plate to help build muscle and it helps with drop foot. I can kind of move my ankle again. I use a device called a galileo at therapy. But there are other options out there as well. Maybe you can ask your PT or find a PT that has this, in conjunction with other forms of traditional PT, I think this helps
Hi, I have a spinal AVM around T10 to the conus. Iv had mine just over 5 years now and had a partial embolisation nearly 4 years ago, I too have leg weakness and muscle loss both legs but mainly right leg with foot drop. Also bladder/bowel dysfunction, I walk with 2 crutches as have no balance but I have found by walking as much as possible and keeping weight under control my mobility has stayed the same and not got worse, just have to keep going, nobody can say things will get better I’m only talking from my experience and I’m happy if things don’t get worse
It took me a full year of PT and OT to get back to any semblance of normal. I had foot drop and they made me a plastic leg brace that went into my shoe. That helped with the foot drop. I had PT twice a day for the 1st month while hospitalized and outpatient PT and OT every day for a year. During that time I got rid of the brace. I have to say it was a long hard road. Also it was 1973 and hospitals let you stay longer. Do your PT exercises at home. Concentrate with all your might to get your foot up. God Bless and keep the Faith.