I'm somewhat new to this site. After reading a lot of posts, most people seem to have had a brain AVM. Mine was in the thoracic region (mid-back)and affected mostly my right leg (weakness, numbness, etc). I am looking for someone who has an AVM in the same regain to compare progress with. ANYONE ON HERE CARE TO COMMENT???
Join us on the Extremities page. We will have much in common! Was yours pressing on the spinal cord? Then I'd ask a mod which page would best suit your needs. Spinal cord is a continuation of brain; so those neuro symptoms might be more similar to people with damage to cervical area of spine. On extremitis, we deal with embolizations and ulcerated skin. Also the effect it has on our lives. But as for specific details of progress, I don't know.....
We do have docs and a PT online. Maybe one of them can provide input.
In no way am I being dismissive, just want to find you the best place for you. It would help if we knew what type of treatment you had? I will read your history. Laser and such are used on brain and maybe spinal cord?
As far as support, we all share that. SOrry to hear that your life is stressed by an AVM. I am getting my custom made compression garments TOMORROW!! after a long wait. Like you, my walking is so affected by my Thich/buttock AVM which I have had since birth. Yesterday I was celebrating #61 bday on boardwalk, with my grandchildren and family. Today I am swollen and sore. I feel like I get one good day followed by 2 where I pay the price. I can relate to any of that. Search for "thoracic".
Hi Jilliebean, We have many groups that may have members close to you in location and also have similar or same AVM's as you here : http://www.avmsurvivors.org/groups , These members can offer advice based on there own experiences, But here we should not be offering you medical advice as the only person qualified to do this is your own doctors who have access to your medical history. Thanks and hope you find connections here.
Hi, Jilliebean. I too had an AVM on the right side of my thoracic spine. By the time it was correctly diagnosed I was dependent on a walker, had gotten hand controls for my car and had episodes where my legs felt like jelly. I had surgery just over three years ago and have stabilized with some improvement. After months of physical therapy I can walk short distances with a quad cane. I am 63 now -- retired last year, but worked at desk job 4 days a week for 2 years after surgery.
Are there any questions I can answer for you about my own experience?
Winter Storm: Congrats on your retirement!
Since you have a similar history to Jilliebean:pls share what Group was most helpful to you?
JillieBean -- look under groups and you can find one for spinal AVM or AVF.
Thank GOD there's someone else out there like me!! I was beginning to feel so alone in this journey!
My symptoms started in July 2015 but I wasn't correctly diagnosed until Feb 2016 when I had lost all function to my right leg and had surgery. I am currently still in PT 1x per week, practicing with quad canes but mostly using a wheeled walker to get around.
How long were you off work when your symptoms started? I have since lost my job, worked for a small company as a bookkeeper and that position can't be vacant.
Wondering how long it'll be until I feel some normalcy to my life again. I'm going to be 55 next month and want to be able to travel again! Plus my drivers license is up for renewal next month and I obviously can't get it renewed at this point. Are you driving "normally" now?
I have so many more questions but don't want to overload you :)
I actually kept working during the 2+ years it took for them to diagnose me. I worked for a computer software company. For a while I used a cane, then a walker. I got hand controls for my car months prior to diagnosis because I couldn't trust my right foot to find the brake pedal. It cost about $3000 to get the equipment installed and be trained, but so worth it. I still use them plus a wheeled walker. I took about 2 months off for surgery and rehab then went back to work having used up all my leave. After about two months I requested to cut back to 4 days a week, taking Wednesdays off. It was, and still is, exhausting just to do the daily things.
Since you were diagnosed and operated on much faster than me, you have a better chance of recovering more (from what I've read). I was told to expect some improvement for at least a year post op, but that the surgery was a success if I didn't get worse. So I have a new normal. I'm divorced with 4 grown children. Recently moved into a small condo where I am mostly independent. I drive when I travel - one airplane trip convinced me not to try again. And I book handicap accessible rooms.
Some days I'm more depressed than others when I think about what I can't do. I was never a big traveler, but loved hiking and camping. I got a TerraTrike about a year ago and live in a town with miles of paved biking trails and that has helped keep my spirits up and weight down. Keep up with the PT as long as you can and best of luck to you.
Thanks for your response. I saw one of my doctor's yesterday and he was impressed with my progress. I brought my quad canes and showed him that I m able to walk short distances with them. He admitted that he didn't think I would ever get this far. Since I am approx. 6 months out from surgery, I should continue to see improvement for sometime yet.
Wondering what you've read and where you found it? I am in Wisconsin and considering going to Mayo Clinic in Minnesota so see what they say about long term prognosis. There aren't lot of doctors in my area that are familiar with this and no one can seem to tell me where I might end up.
It is hard to stay positive some days. I guess I keep remembering how far I've come and that keeps looking forward. I have a recumbent bike I ride every day to try to regain some strength on my right leg.
Hello I am here I have spinal avm t19 to L1 you are not alone.
T10 sorry. I too have symptoms that don’t seem common for this. I get pain, shooting pain, tingling, pins and needles, numbness, tiredness it’s very sad really but I try to be positive. It seems to be progressively worsening for me over years. But I’m seeking help now that I have correct diagnosis. I’ll go to doctor this Thursday June 29th for more information on what to do. I try to walk even though it exasperates the issues bc exercise is healthy. I hope I can get a procedure and out this all behind me!
One day my right leg too was mostly effected and it was paralysed for 8 hours. I could not get it to move or bend or anything. It was like the connection was cut off from my brain. It was the strangest thing. It was from hip to foot. I was staring at my leg on the subway train willing it to move. I essentially had to drag it and then the pain in my hip was excruciating and I cried. But that never happened again. Only once.