Hi! My name is Julie, I am 30 years old and live in Norway.
Thank you for letting me join this group.
I recently got diagnosed with spinal AVM. I dont know a lot about it yet, but I am waiting for an angiogram in the hospital. I found out about the AVM because I was hospitalized with a MS relapse. I have had MS since I was 17, and its been aggressive. I have been treated with hematopoietic stem cell transplant and lots of dmd’s. My concern now is I have no idea which symptoms are from MS and which are from the AVM. My doctors told me not to worry too much and that its not urgent.
Do any of you have experience with spinal AVM’s? Mine is in the «T10» area of the spine.
Welcome to our community! I hope we have people here who can help you through all your questions. I have added you to the (quite big these days) @Spinal group. I also know we have a couple of AVMers in Norway, so you’re never on your own!
I hope some of the Spinal members will be able to help you.
Welcome to the board. I had an AVM in a similar area. The angiogram will be a key to understanding your condition. Don’t sweat the angiogram- it is painless. I would push to have it done as sooner is better then later.
Hi Julie , I have a spinal AVM in the same area, I had a partial embolisation in October 2016 and it is stable at present, I gave symptoms of bilateral leg weakness, right foot drop, numbness around saddle region bladder retention and loss of sensation. Not sure what your MS symptoms are but the symptoms I have are common with a spinal AVM in the lower spine
Thank you all for the welcome and kind words. I want to do the angiogram as soon as possible, but its public health care in Norway, so I just have to wait until they let me.
I have all of the same symptoms as you Jamie4, and also many others. All of these are very typical MS, but I am hoping that maybe I will feel better if I have the AVM removed.
I’m sure once you have the angiogram it will give s clear picture of the AVM and the possible procedures available. Surgery to remove mine was not an option as it’s very complex and too risky so I had embolisation to slow the blood flow down. If your symptoms are getting worse I would chase them up to do the angio, I had to wait a year and got a lot worse over that period but have since remained the same
I agree with Jamie… If you get any degradation in your symptoms, make sure to tell your doctors about it, so they might move you up the queue. It’s a good thing if they currently look upon it as not urgent but don’t just assume you’re better off than others… make sure any changes get due consideration. If you have any sudden or significant changes, go back immediately (this is true for brain AVMs and I assume spinal, too).
I’m sure you’re used to playing a fairly long game, having MS.
Min far bor nær til Akershus Universitetssykehuset i Lørenskog. Beste hilsener!
Hi Julie,
Welcome here. I joined not so long ago and similarly had health issues prior to my AVM. The angio determined it was near C2/3, it was a vv-avm, fairly rare. Made me scared of what I was in for once it was resolved.
Post embolisation not only did the symptoms that cropped up in the past 2 yrs resolve completely and instantly but I’ve had so many other improvements that I could have never imagined were related. I think symptoms in my body were just increasing over the years so slightly that I didn’t even know how horrible I felt until I didn’t.
I have been just truly amazed and how much better I feel. Something simple like stretching and not having muscles cramp and knot. Stretching my back and neck and hearing cracking, everything was so tight before nothing moved or cracked… for years. Every day feels like I woke up having a massage compared to before.
Amazed at the affect that messed up blood flow in your spine/brain can have. I hope you get in soon and things go well for you too.
