Backstory: Hello everyone. My story start back in 2010. I went on my holidays to Ireland when I was nine years old, I had a fall down the stairs landing directly on my back. The next day I woke up with my avm rupturing. I have no idea if the fall contributed to the avm rupture or not. I got paralysed from the chest down. Diagnosed with a spinal avm levels t7-c7. Had two embolizations and permanently moved to Ireland. Had constant mri’s up until I turned 18. I am 24 years old now. And I am very oblivious to what my avm actually means, I would say I could chalk it up to the fact I was a nine year old kid who barely spoke English, I assumed for most of my life that an embolisation was a cure all and my avm is not going to rupture ever again. But recently I have been putting in more research into my avm as I was planning on having kids in the future. From what I understand spinal avm’s are less common and quite rare(lucky me). So, any research is limited and quite hard to find, because most sources cite cerebral avm. Looking at my medical reports and anything available to me online, what I gathered for the most part is that my avm was not completely obliterated, it is quite big and complex(a third embolisation was considered but ultimately deemed too risky) so any other treatment seems unlikely otherwise I assume it would have been attempted. My online sleuthing is contradictory because some sources say that the fact my avm has been stable for the past 15 years is a good sign, and some sources say that after a long time you are at a more of a risk of the avm re-rupturing. I had a year ago or so an appointment with a neurosurgeon about my risk if I was to have kids and honestly the neurosurgeon didn’t see any problem or risk even saying I could try natural birth. This neurosurgeon is not specialised in avm’s and I wonder if my prognosis would be different if I spoke to an avm specialist. As far as I know there really is only one in Ireland. I am pretty scared and confused, any back pain I get it just sends me into a panic thinking that my avm is about to rupture for a second time. I am scared that a second rupture would leave me quadriplegic instead of paraplegic, I am scared that motherhood is not an option for me. I am looking for any advice, I have booked another appointment with a neurosurgeon but I don’t know yet which neurosurgeon it will be, I am open to look for consultations in different countries specifically for spinal avm’s, would love to hear experiences of other people, advice on what questions I should ask my neurosurgeon. Any response would be helpful in taking my mind off my worry while I wait for the neurosurgeon appointment. This is my first time posting anything so if I am posting it in the wrong section or if I am doing something wrong please let me know. Thank you.
Hi @kat25 , happy to ‘meet’ you and welcome to the community! 
That sounds like a very sudden, scary introduction to the world of AVMs. You’ve navigated so much since 9 years-old, you’re still here and thriving, and considering kids! That is hugely inspiring. Thank you for sharing your story.
I am new to this AVM journey. Mine, like yours, is also considered peripheral I believe (occurring outside the brain). I have been doing a lot of research and am looking into facilities for treatment now here in the US. So far, I’ve been in communication with Mayo Clinic Rochester (they’ve treated 3 AVMs in the same location as mine - collar bone area, involving the brachial plexus), Johns Hopkins, and the AVM Center (Lenox Hill, NY).
I’ve had a consult with Mayo, and I’m awaiting consults with Hopkins and the AVM Center. I don’t have info on AVM treatment in other countries, other than stumbling onto a medical journal that described a successful staged embolization and surgical removal of a giant supraclavicular fossa AVM similar to what I’m dealing with.
I found the email addresses of those involved with the research and will be reaching out to see if they have any connections or insight into similar treatment in the US.
All that to say, what has helped me so far was searching medical journals and online forums for cases similar to mine (though exceedingly rare, been tough to find), and then using ChatGPT to help me analyze my scan findings, and working with my interventional radiologist to send referrals to the top facilities.
It’s been loads of time, phone calls, emails — consistent follow up is needed for effective self-advocacy. Persistence, kindness, curiosity, willingness to connect with others, patience in the in-betweens, and prayer are opening the right doors for me so far.
Wishing you all the best, sending hugs and prayers your way, friend! Feel free to reach out if you’d like to bounce ideas off someone.
Rachel 
Hi @kat25
Welcome to AVM survivors!
You’re right, @Spinal AVMs are rarer than brain AVMs, so I guess much more difficult to find relevant papers (or relevant specialists).
A lot of people in Northern Ireland seem to pop over to Great Britain for treatment, often in the North West (or in Sheffield in those cases for a brain AVM where radiotherapy is recommended). I would consider extending your search to Great Britain. Likewise, there will be more specialists in Europe, so you’d be very much advised to have a look there. Since this is principally an English language forum, we have fewer German or French speaking members than we might, so my assumption is that there are spinal AVM specialists in Europe that I’ve not seen mention of.
You’ll find the stories of the other Spinal guys and girls in the Types of AVM – Spinal AVMs category accessible from the home page: have a good look through there for people who may be able to help. I do think you need a spinal specialist. While spinal DAVFs are often embolized, I read of “laminectomies” also being performed and therefore you should learn about these.
I’m sure some of the Spinal folk will help you along the way.
Welcome!
Richard
Yes I had a spinal AVM but can’t maneuver through the site
Probably the most useful place to start if you can’t figure out how to find different stories is just to start here:
https://avmsurvivors.org/latest
It basically lists every conversation in reverse chronological order, so you can stay in step with everything that’s current. As a moderator, it’s my go-to place.
And all of the spinal stuff is here:
https://avmsurvivors.org/c/types-of-avms/spinal-avm/41
Richard
I’ve learned many things since my symptoms first showed up in early 2020. Most important is to get second and third opinions. Between the time my first symptoms appeared - and the final determination that I had SDAVF - I was diagnosed with: simple parasthesia, neuropathy, transverse myelitis, syringo mylea, advanced MS, spine cancer - and - at one point - SDAVF - but even after a spinal angiogram in 2021, they couldn’t find the SDAVF (and this was at Baylor Spine Center - a top tier facility).
Finally three months ago my neuro oncologist called me, “we know what the problem is.” And that was finally the official SDAVF diagnosis - the same one they missed 4 years ago.
I’m in the Houston area - a great place to be if you have a serious ailment. I saw some of the top names in the area - highly recommended - HIGHLY recommended - and I was just “another patient” to them. They would say, “if it gets worse, schedule an appointment, if not, see me in a year.”
And then in March a co-worker recommended their own neurologist. “This guy gets it. He gives a shit”. And within two months I was scheduled for the needed surgery.
I guess the short version being; use all your connections and networking skills to find the neurologist that takes up your cause.
Hi ,
I had developed spinal avf immediately 2 months after Corona vaccine moderna in march-2022 , lebectomy done at Toronto hospital for removal of spinal dural av fitsula at T6-T7 level after which my lower limbs partially kind of paralyse like feel high numbness n very heavy legs pains etc etc also constipation and oab , i still work hard physiotherapy and able to walk with support .
Regards
Syed
Hello, Glad you found this resource…it was such a comfort to me to know I’m not completely alone in navigating life with an AVM diagnosis. I was officially diagnosed in 2023 with a large complex AVF in my neck (c1-c7)…had an embolization procedure done which seems to have cured it…MRI coming up in september to see how things are looking. It was during my pregnancy 21 years ago that the symptoms of my AVF really presented (bruit, loud swishing sound), chronic neck and back pain etc. Before the pregnancy I just had random sporadic bouts of pain…during and after pregnancy everything really ramped up. I didn’t look into the symptoms at the time because I just thought they were part of pregnancy. Looking back I’m thankful everything went as well as it did. In my case I’d say the pregnancy contributed to my AVF growing and symptoms becoming worse. I didn’t even consider a second pregnancy. I did become a foster mother though and have had an opportunity to nurture many beautiful babies!
Hey I have a spinal AVM in T9-10 that’s both inside and outside my spinal cord and is deemed too risky to operate on or do anything with unless I deteriorate symptom wise. (My current symptoms are stable with just dulled sensations in my legs and sometime with more intense exercise I can’t move them as quickly as my brain is telling them to move)
I have had 4 pregnancies and children (just had my 4th 6 weeks ago) with zero issues with my AVM (I may be unusual in that though) my AVM has been stable throughout it all and has not ruptured (it last ruptured in 2015 when I was 21 and that’s when they found it). From what my neurosurgeon told me the risk of rupture increases by 20% while pregnant due to the extra blood flow. Also do not attempt a natural birth! I can only give birth via c-section under GA as that is the safest option for anyone with an AVM anywhere in their body! A spinal tape or epidural is also risky especially with a spinal AVM as it can upset the fluid balance and could cause a rupture hence avoiding it with a general anaesthetic.
My Neuro at this point says I can have as many kids as I want provided my yearly MRI scans come back with everything being relatively stable
If you have any other questions please ask away!