Hello DickD,
Hope your spinal davf resolved good , i like to be in know esp with spinal dural fitsula patients status after some time, like after affects pain management , legs status etc etc Coz my not much improved like i feel heavy stiffness in lower limbs , other issues as well altho i cam walk but nerve damage badly
Can you pls share yr conditions
Regards
Syed
Hi @Ahmed
I had a brain DAVF rather a spinal DAVF. You’ll find I’m a member of every group on the forum so that I can help with moderation so don’t pay attention to which groups I’ve joined. I’ve moved your question to the Spinal section and some of the @Spinal ladies and gents will be able to answer more properly how they are getting on.
The impression I get from reading the stories of the other Spinal guys is that you’re going through much the same as them. It takes a long time to get much better, not everything will improve but there is good life to be had beyond these things. The key thing is to keep active, keep going and don’t give up. As one of my old bosses used to tell me in his most generous moments(!) “Nobody ever said life was going to be fair, Richard!”
No, life isn’t altogether fair, so the only thing to do is work with what we’ve got.
As for my brain DAVF, I had it filled with a bunch of glue back in 2017. It was “fixed” in one sitting but didn’t feel fixed for a very long time. I had a very loud pulse post op that was very disturbing and I was convinced I needed further treatment. However, after further scans a year later and a final report about 18 months later, the conclusion was that there was “no physiological reason” for any remaining weirdness that I felt persisted and the only thing for me to do was to “just get back to normal life.” I decided to ignore any remaining niggles unless they manifested into bigger things and after about two years post op, I decided that ignoring those things had served me well. I’ve not looked back since and I’ve remained good. I do everything that any average late fifties/early sixties person might do. Life is good.
I do think recovery takes years plural, so don’t lose heart: keep doing the exercises that you’ve been given and keep going. If you have any setbacks, talk to the doctor about them, especially anything that appears to be significant, but otherwise press on with life. Don’t lose time bothering about the change in direction. Just make sure you get out of life what you want to get out of life, that’s my motto.
I’m sure some of the Spinal team will share their experience.
Very best wishes,
Richard
Thanks alot DickD
Hello Ahmed
Spinal Dural AV Fistula is what I was finally diagnosed with. Very small symptoms began in late 2019. Heavy legs, numbness in legs, feet, toes. Over time they got worse - and I was mis-diagnosed for five years. In 2023 the symptoms got much worse - as I had trouble even walking or standing too long…along with some bladder problems and ED. In 2025 I was finally diagnosed - officially diagnosed - with the SDAVF. T9-T12 range. At that point I was using a walker to get around 50% of the time.
In June I had successful surgery. It has been a VERY slow and non-linear recovery - but - I can walk unlimited distance and stand for unlimited periods of time. The only symptom that hasn’t improved in muscle spasticity in my legs. I am not in any pain and still go to the gym six days a week and do heavy weights and some cardio - but - my leg muscles are always very tight - I am unable to lightly jog more than 20 yards. They get worse the longer I sit or lie down - but once I walk around for a bit - my legs get better. My bladder issue is mostly resolved.
I had another MRI yesterday and get the results tomorrow. I will let you know what the Dr says.
Mike
Woodlands, TX
Hello Mike,
Glad to know that you improve well And back towards Normalcy , Yes I also had quite similar Davf At T6-7 level , surgery done March 2022 while symtoms started late 2021 same like your symtoms.
I did start walk initially with Rollator then move to cain support, Still use cain for walk esp when outside, Can do most of things drive walk etc But my nerve pain seems rather going towards Up, Much spasm in lower limbs stiffness etc constipation while bladder much better.
Anyway I still feel and acknowledge Gods blessing Esp when i see feedback from other AVM , Though I feel depressed And miss my love for sports Tennis As i use to play over 20 years, so many other things missing
But God is Great that I am blessed with much recovery.
Keep in touch and update please.
Regards
Ahmed