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Newly Diagnosed Spinal AVM


#1

Hello!

I was recently diagnosed with a spinal AVM in T8 - T12. They also mentioned AV Fistula? This is all very new to me. So I would appreciate any guidance that could be offered.

Basically I woke up one night with complete numbness in my saddle area. I decided to wait and see what would happen. Two hours later the numbness had spread and was worse. I decided to go to the ER, where they ended up admitting me for several days. Multiple MRIs, an angiogram and several appointments later - here I am.

The neurologist advised me of the risk of hemorrhage and stroke then told me he wanted to follow up with me in three months. I’ve never had anything like this before and so I couldn’t think of many questions at the time of our appointment. A lot of what I have read online indicates that eventually most people have some sort of treatment. Is this really the case? Also, what are symptoms that people have experienced? I havent really encountered the “pins and needles” sensation much, but I do suffer from back pain and have most of my life. I have also noticed this really weird pulsing sensation that occurs in my spine when I move to fast or sit down. I can feel my heart beat traveling up my spine and ultimately stops in my cervical area. The pulse is really strong and often painful. Could AVM cause this?

I know I am all over the place, so I apologize. I will talk to the neurologist the next time I see him and make a list of questions. But, I was hoping to get some responses with people’s own experiences in the mean time.

Thanks!
Megan


#2

Hello @megumi1002 and Welcome to the group. This is a very supportive group. I am so sorry you have a spinal AVM.
There are many people on here who have spinal AVMs and can answer your questions and share their experiences. You do want someone who has vast experience since these are rare.
Dont be afraid to ask or say anything here we all have had our freak out and we know what you are going through.
Here is a link of of avms and spinal topics that you may want to read in the meantime
https://www.avmsurvivors.org/search?q=spinal%20avm%20order%3Alatest

hugs Angela


#3

Megan,

Welcome! Well done for joining the Spinal group and posting in the spinal area. I hope some of the spinal people can answer some of your questions. We don’t have so many spinal members as brain members, so not so many people to chat with but I hope we’ll find some comrades for you.

My reading of spinal posts over the last year or so is that your symptoms do sound related to your AVM to me. But my AVM is a dural arteriovenous fistula in my right occipital, not in my spine, so my symptoms are different. In my case, I could both hear and feel my pulse.

There is a risk of haemorrhage from these things, so if you get any sudden change in symptoms always seek a doctor. It is also very shocking to get a diagnosis like this but take heart, we’ve all had a diagnosis and gone through the same shocks. It is good to work out ways of coming to terms with it, a bit. That might be simply being here among friends or learning about it and the possible treatments or something else but however you need support, feel free to reach to this community.

Best wishes

Richard


#4

Hi Megan!

I also had a Spinal AVM around the T12 area. My symptoms were different, as I had the pins and needles on my right side and then within about 9 months it progressed into a lot of leg weakness where I had troubles walking. One doctor called it a fistula, one a spinal AVM, and my surgeon used them both interchangeably…so I have no clue honestly! I think a fistula is a type of AVM.

Due to spinal AVM’s being so rare and each one being different, it’s hard to say what the route will be going forward. If your symptoms are manageable, you may choose just to watch it closely.

I ultimately decided to have my AVM removed because it was causing so many issues for me. I am about 4 months into my recovery, and though it’s going well, it’s slow and takes time.

I am in Spinal AVM Facebook group too, and I have heard about the back pain and pulsing sensations from other members. I have not personally had that issue.

Do you have a neurologist who is familiar with spinal AVMs? They are a bit hard to come by, but I recommend seeing someone with experience even if it means traveling.