Hi all. 24 F, from India. I was diagnosed with spinal AVM in 2021 due to back pain but the doctors deemed it too risky for embolization and asked me to go on with life as I had no symptoms. In 2024 it ruptured and caused an sah but i was thankful that my spinal cord did not suffer any damage and I was completely fine. Doctors tried to embolize it but abandoned the procedure due to asa involvement. In july 2025 I requested my doctors to try again as I could not live with the thought of it rupturing again in my head. I was at that stage asymptomatic just pain. The doctor was reluctant and said he wouldn’t go ahead with it if there’s even a 1% risk. So he closed off my epidural avf which was easier to treat and left the conus avf open as it was risky. Soon after the embolization I started feeling tight in my leg which I didn’t know was spasticity and weird balance issues but thought it’s just from the embolization. I couldn’t walk up stairs, lift my leg to enter vehicles but I wasn’t still suspicious these symptoms kept increasing but in a subtle manner until my bladder bowel got affected and I couldn’t pee at all, cannot walk without support. Another embolization was attempted in feb 2026 where the conus avf was partially treated. I was on a catheter which i am off of now, but peeing is position dependent on bed and I can have bowel movement without laxatives but in 2-3 days. Spasticity went down but weakness worse and right foot drop mild. I can’t walk without holding someone. I don’t use walker because I can’t accept that I need a mobility aid at this age. In comparison to post embo mri my recent mri shows increased edema. Doctors will try another embolization in October. Can i ever recover and should i be hopeful for future. I do feel suicidal because I did this to myself when the doctors were refusing.
Hello Sanyaa
I also have an AVM, it is at my T12. An aneurysm burst in my spine and that’s how they found it. It happened in May of 2018. I’ve had a total of four surgeries, the last one in December of 2020. I have constant pain from the lower back to my toes. I also experience waves of acute pains randomly throughout my lower body with no warning. I’ve had numerous MRI’s and tests. The doctors say it takes a lot of time (years) for your body to recover and heal. I was very active middle aged man in the USA at the time and it all changed in seconds. I’m sorry you have to go through it all! But hang in there! You are not alone!
In know it’s tough, use the walker! No shame, it does help!
Richie
Hello Richie And Sanyaa,
I fully agree with Richie , Spinal avf surely painful as i wrnt thru Lamectomy for t6-7 in March-2022 in canada though recovery very slow but fortunately with efforts still in process after long 4 years. I start walk with support within 2 months after surgery And nowadays can walk inside without support while for outside i use cain .
I advise you stay strong And use support rollator or cain whatever helps to walk, as your edema recede you ll feel much better But Spinal recovery surely quite slow , Also depends on how much nerve damage has occured .
Since you are v young hopefully your recovery can be fast .
I find this avm survivors forum very helpful in understanding this stupid desease 
And at times i feel much blessed .
Thanks
Syed
Just hang on in there, sanyaa.
Can understand how you feel about Life and things.
See. The nerves take a long time to build but they do rebuild . Just give this lot of time . Take your medicines if anything helps . Just move in the direction of gaining strength and mobility , however small efforts you can put in on a daily / regular basis. Physio is the key to defeating this condition .
This will take some time. But in the end you will come out strong.
Best Wishes
karthik
Hi Sanyaa.
I had an SDAVF from my brain stem to T-7.
It progressed from total bladder retention to almost fully paralysed within 2 months. I was rushed to hospital and had my embolism the very next morning.
I think i did have symptoms before hand but i was a carer for my terminally ill Mum, so i didn’t bother to go to the doctors.
I am now 8 weeks post embolization and my whole life has changed.
I still have many of the symptoms i had before the operation. I’ve had to use a walking stick to be able to go to the local shops. I really don’t like using the stick. I feel embarrassed to be honest. But i know i have to.
Mentally i honesty don’t know where i am? I think it’s going to take more time to understand my new “normal”
I’m lucky living in the UK. I have financial stabitity, as I’m on sick pay and then, more than likely, state benefits. I don’t really want any of this, as I’m nearly 58 and have worked all my adult life.
What i get back, is anyone’s guess but this group as been helpful and if you search “SDAVF” on Facebook, theres a group of over 200 people, dedicated to just this condition. It’s all very helpful.
The way I’ve read this, the younger you are, the better your chances of having a good recovery.
I know i cant say anything to necessarily make you feel any better but you just have to be strong and fight this thing.
I do feel slightly better in some ways and it is very early days for my recovery.
Good luck for the future and best wishes.
Hi Sanyaa,
I echo what the others have said. It’s unfair and recovery is hard work but certainly possible. Keep your spirits up and keep going!
Danny
You can’t feel badly about it. If the doctors recommended to do nothing, it was probably because the risks outweighed the benefits at that time. But, I understand how you feel. I am in the US, but have a complicated case and I have been turned down by Dr. Moret (for embolization) in Paris several times going back as early as 1989 due to the risk. I did have surgery.
As someone said continued exercise is key, and you have to have perseverance, hard as it seems. Give it your best.
The alternative may be contacting other doctors for multiple opinions. If the possibility exists maybe even in Europe or the US. These are very, very rare, be careful who you listen to as hardly any doctors have experience with spinal avm’s. But, there are a few with more experience than others. But, you can’t compare yourself to anyone because they are all unique, and you may be in a better situation than say someone else.
If you are able to seek second opinions, you need only reach out. There are people on here that are happy to give you an idea of who you could contact. And, these second opinions may not even have to be in person. It’s possible that they might be able to just look at your complete medical records and films and give you an opinion.
Good luck, keep up exercise and therapy if possible. And, lastly, you are your own best advocate. Seek opinions and information.
Take care.
I have a ? With Spinal Avm’ers , Whats chance of Recurrence Spdavf in case of Embolization VS Lemectomy ?
Regards
Syed
The real question should be how much of the avm is eliminated by either way. Because they grow back over time by recruiting new blood vessels and it can be a lifelong problem.
my experience and what neuro Drs said that on spinal davf chances of recurrence are least in case of lemactomy or surgical blockage compare to embolization
Ahmed, they don’t grow back if the doctor can totally eliminate it. I had a laminectomy in which a small part was left. It recruited blood vessels and grew back. Some are just too risky to completely resolve. It depends on lots of different things. If it’s intramedullary or fed by a prominent artery it may not be possible. I don’t believe that they always know until they get in there. Usually the first approach is to see if embolization is possible because it’s the simplest approach, if you’re not a candidate then surgery is the next. It all depends on how much risk a doctor thinks he can take without harming you.
We have at least 150 people in this community, as well.
Hi Sanyaa,
I have never posted here before. Just been reading for years. Your post touched me, as the possible SDAVF in my spine at the conus medularris has caused me to have same thoughts as you. Your post tells me to maybe hold my ground in avoiding medical intervention. Stay alive and keep helping yourself and others in any ways you can. Your post helped me. I have had to choose between cathether angiogram to definitively diagnose or live my life wondering when will I start going paralyzed from waist down? I have chose the latter for over 10 years, and it gets harder and harder as I age, because every time I have a symptom or pain which I have a lot, I think it’s the AVM. I finally talked to a neurosurgeon a few weeks ago and I’m getting an MRI of lumbar thoracic no contrast. I don’t want contrast, and I don’t want the catheter angiogram. I think like you that if I get into a lot of trouble… that if this thing blows up into causing my life severe difficulties…. that I don’t want to stay alive, but I think we should help each other stay alive.
I’m hoping that you write again.