Hi all - 58 yr old male - Houston, TX - new to the group - just sharing experience to start a conversation, learn a lot and maybe help others. In my 40s and early 50s was an Iron Man and endurance swimmer. Non smoker, but I like my beer.
Usual neuropathy symptoms started in 2020. Very mild, Drs couldn’t identify anything. EMG normal. 2021 symptoms slightly worse but was still 99% functional. MRI then showed inflammation at the T-10. Other tests and spinal tap showed nothing- so the diagnosis was transverse myelitis. Baylor spine center said it was AVF - but the angiogram showed nothing.
Then another neurologist said it was syringo mylea. Over time numbness etc got slowly worse - but nothing that worried me. The consensus was tranverse mylelitis. In 2023 a noticeable negative shift but neurologists still saw nothing new.
April 2025 - new neurologist said it was either MS or glioma. Testing confirmed neither - so finally - May 2025, they are pretty sure it’s Spinal AVDF, T4 area. All the while - the issues are accelerating. I was using a walker part time, bowels mostly good, bladder more of a problem. Leg muscle mass decreasing but very very tight. ED extreme. Cognitive - I would say fine - more forgetful than usual - but I’m 58.
4 hour surgery June 2 was said to be successful. Since that time - had recurring pain in left shoulder blade that just went away. Mobility pretty much the same as heading into the surgery. Occasional walker use, bladder issues but not too bad. I try to stay active to keep the blood flowing. Upper body gym workouts 4 days per week. Leg workouts - very light - maybe 3 days per week. Lots of time in the pool working leg muscles and flexibility. The only thing I have noticed is that when I work my leg muscles - about two hours later - my leg strength goes to only 10%. But - it comes back within an hour or two.
Lastly - when I sleep - or am still for extended periods - my leg muscles get very very tight - cramp level tight - but once I move around - it goes back to just “somewhat tight.”
Welcome! Great to hear things are progressing so well post surgery. My AVM was in the left temporal and decided to show itself in 2016 via bleeding. I ended up having gamma knife due to the less risk than craniotomy as it was on the inside of the lobe. In 2023 I had a seizure so am on medication (Keppra) but tolerate it fairly well. Staying active has been key for me, physically and mentally.
I enjoy triathlons of all sorts, while not doing any this year, so far due to a move and job change, hopefully more in the future. Everyone gets a little nervous when I head out for the open water swim for sure. Looking at maybe Portugal next year, but might sway towards the UK, but I’m starting to avoid cold water! I have done a couple full Ironmans, Wisconsin and Canada (Penticton). I turn 60 in 2 and a half years and that might be the next full distance, but we’ll see. I enjoy the 70.3 distance now and the Oly distance with the small town events. So much fun meeting people.
Stay at it! My goal post bleed and gamma knife became the Wisconsin event, and was a point that motivated me to stay active and continue recovery. Take Care, John.
Glad to hear you’re doing well. My last endurance swim was Lake Tahoe in 2023 right before my problem accelerated. 12 miles. Water temp was about 63f. I had trained in 55degree water in Long Island Sound - and 30 minute ice baths every night. Water temp had no impact me. If my condition improves I plan to get back into endurance events.
Thanks for reaching out again and best of luck to you!
Hi Mike, thanks for sharing your story! I’m sorry it took so long to get diagnosed… I think that tends to be a common theme. Long path to diagnosis with symptoms progressively getting worse. The part you wrote about symptoms being basically the same pre and post surgery really resonated with me too. I’ll never forget one of my surgeons telling me that I would be in a wheelchair if it weren’t for the various surgeries and procedures I had undergone. I was diagnosed w spinal AVM, T-11 in 2018. Wow, impressive about your swimming, esp in frigid Lake Tahoe. We live in San Francisco and my husband goes skiing there often in the winter while I take it easy and hang out at the cozy hotel lol. I’m really sensitive to water temperatures so don’t like swimming much. Also someone in our forum once mentioned walking around like Frankenstein which is exactly how I feel. When I get up in the middle of the night I sometimes bend my knees a few times before I get moving. Another thing I do sometimes when I’m walking outside is to exaggerate my hip movements, to me it’s exaggerated but I think it looks more natural or fluid when I do that.
Keep up the great recovery work, it sounds like you were and are in great shape to me!
Thanks for that. Tahoe is a great area. I’ve acclimated mentally for cold water - but I still don’t like it.
In term of my SDAVF post surgery 7 weeks ago - I have small improvements for a few days, then a day or two of pullbacks - but - the trend is slowly positive. Still limited mobility - but haven’t used the walker in two weeks. Bladder issues are better - but - not perfect. Mentally I am in a good place.
I just had the follow up MRI since the June surgery. Dr said the swelling and fluids seen in the MRI are normal after such surgery (4 hour surgery on the T4-6 area). He said everything is day to day in terms of recovery - but the MRI shows all the things are in place for a “decent” recovery - all going well. Could take 6 months or more. But - he said I can ramp up cardio and weights as my body allows. I remain cautiously optimistic. The pullbacks are annoying and worrisome - but the trend is still slightly to the upside.
I think the non-linear progress is pretty typical, so I wouldn’t worry overly about the pattern. My DAVF was mid-centre of the back of my head and it took me about 18m-2y to get through the changes post op and decide I was back to being me. A lot of it for me was trust in the doctors and trust in the process, that those steps back weren’t significant and that so long as I went forwards on a monthly basis rather than a daily basis, I was doing ok.
Always get worrisome stuff checked out but I think progress does not go in a straight line.
Glad to hear you’re keeping active because I think that’s a crucial part of the recovery. I had my procedure done in 2018 and still have that issue with my legs losing strength as the day goes on. I do 3 sets of body weight squats and weighted leg extensions topped off with a 10 mile ride on my recumbent bike in the morning to “charge” my legs it helps me stay mobile throughout the morning. My condition may be a little worse because I had a spinal stroke during the procedure that left me with drop foot, spasticity and heavy leg syndrome that all add to the fatigue. Look into Botox injections if the cramps get too severe, it’s not a permanent fix but after 7 years of isolation workouts to remedy them I don’t think there is a permanent solution. Insurance will cover the injections for neurological damage. I just started them this year and it’s pretty noticeable in hindsight I should have started it sooner but I’m stubborn and thought I could just build enough muscle to fix the problem.
Thanks, Chris. The annoyingly slow and uneven gains are moving at the same pace as the treacherously slow and uneven losses over the years and heading into surgery. Just happy I am moving the right direction - but will let you know how it works out over time. Seems this is a long process - but am staying positive. Cheers - Mike
I’m Danny (45M) from London, UK. This seems as good a place as any to add my first post. I too had surgery, in July 2025, to remove a sdavf that had progressively been causing problems for at least 7 years and I believe far far longer. The surgery was a thoracic laminectomy and disconnection of the fistula under Intraoperative Neurophysiological Monitoring (IONM), specifically at T6/T7. All the problems already mentioned were a factor in my case too including ED, leg stiffness and muscle weakness, spastic gate/leg control loss, pins and needles at my feet and lower legs, leg sensation loss, balance loss and in the year prior to the surgery urinary and then fecal incontinence and severely restricted walking. I had initially been diagnosed with peripheral neuropathy in 2018 and when problems progressed seemingly beyond those of simple neuropathy did have an MRI in 2021 but this was focused on my head only and looked for signs of MS. It was only in 2025 that an MRI of my back found the sdavf and the likely cause of all these problems.
Over that time life got smaller too as inevitably I could do less and less of the things I like to do and a depression/inability to seemingly enjoy anything hit hard and to be honest largely remains to this day. The relationship with my partner of 10 years suffered to the point we split in May 2025, I believe significantly related to the progressive physical and mental problems caused by the sdavf and I consider her almost as much of a victim of it as me. The lost opportunity we had haunts me.
Progress in the 2 months since the surgery has certainly not been linear which I initially found very confusing and disheartening and I’ve additionally found myself with urinary retention with the need to self-catheterise, a significantly weaker right leg and drop foot. I’m doing my physio exercises as much as possible and riding a spin bike to keep fit, build and hopefully maintain the correct muscle mass in my legs and I’m starting to see some limited progress such as the ability to walk further albeit mostly with a cane. I still have a long way to go although I’m often told I am doing well. I’m also seeking help due to the mental trauma as I think this is just as important as the physical recovery.
One topic I haven’t seen covered, forgive me if I missed it, is when anyone of working age went back to work following surgery. What was deemed to be sufficient progress for this to be triggered?
I was told to expect a full recovery but without any clarity as to what this actually meant and the likely timescales so I’m clinging to that prediction and doing everything I can to make it a reality whilst reading many of the posts in this @Spinal section and wondering how realistic it is. It does seem there’s no sure answer and each case is different and we all just have to have hope and keep plugging away. Is there anyone out there with a similar story that has achieved full recovery?
Hello Danny,
Can you contact me directly on my email as i also went thru DAV fitsula in spine which removed Yes same symtoms what you mention i had, few resolved but normalcy not possible even after over 3 years of detection and surgery.
Regards
Syed
Your situation is very very close to mine - though my problems started at age 52 and I finally got diagnosed properly and had the surgery at 58. I was divorced throughout all of this - so while I didn’t lose any relationships - I wasn’t able to actively seek one due to my physical issues. Sorry to hear what you went through - as - what we have is someone invisible and hard to comprehend for most. Not fun. If you are 45 - you are still “in the game” - so stay positive where you can.
My MRI from 7 weeks after surgery confirmed the SDAVF was properly “solved” and they saw nothing in the MRI that would prevent a full recovery - but - there were no guarantees of anything - according to my Dr. He said I could see a significant improvement - and actually expected great improvement - but was clear that at my age and the fact that I was diagnosed late (he said I was probably a month away from being in a wheel chair had we not had the surgery) - it’s all a guess. But he was legit optimistic.
My surgery was almost 4 months ago. I still have small and very uneven improvements in
mobility
leg strength
pain ( my condition was only mildly painful on occasion but getting worse until the surgery)
ED (minor but noticeable improvements)
bladder (retention no longer an issue, though sudden urination is occasional
ability to walk unlimited distances and stand for long periods
I am in the gym 6 days a week working out full and haven’t had any problems other than rebuilding lost leg strength and muscle mass. My Dr fully encouraged this. I haven’t needed a walker in 7 weeks and get around well.
The only area that is getting worse is the muscle spasticity. It’s pretty severe when I sleep or don’t keep blood actively flowing to my legs. It’s not painful at all - just annoying - and - limits my ability to lift my knees enough to jog, though I can walk stairs without using the hand rail. There is another person in this chat group that had similar - and mentioned the spasticity may stay for a long time - or possible “forever”. He also mentioned that botox injections might help there.
I have another follow up in December - so will have another MRI and get a Dr opinion. I am in the Houston area - which has an incredible medical complex - I am lucky on that front.
All told - my progress may stall out and stop at any time, but my view is that at some age - everybody gets something. I was cleared of MS and spine cancer - so I will take my unfortunate case of SDAVF and be thankful.
Best of luck to you - feel free to reach out more with questions.
Thank you for your post.
I had my surgery in July 2017.
But I was told a full recovery may not happen.
Neuro surgeon declared the surgery successful. (advanced spinal surgery with IONM)
I have all the problems that you have listed .
I am an industrial photographer so my career suffered . Could no longer climb ladders or stay on my feet for an extended period of time .
Since I am the only bread winner of my family
I had to adapt . I started taking on small jobs I could do in related areas , taught workshops, I am a printer now and am trying to manage .
I have spastic legs , bad balance , cannot walk for more than 2 kms, have bowel issues - yes and can’t enjoy anything as often I am under pressure to earn to pay the rent and stuff . It is constant uphill .
Like you, constant Physio . I am now 62 years of age (M).
Let s see how this goes. On a rare few days my body is quiet and I wish that could continue .
Thank you Mike and good luck to you for a continued and full recovery. Your experience gives me hope and I’ll keep pushing for us much help as possible from the great resources in the London area.
Danny, my surgery was C-4 thru 6 and it has been 15 years. I developed drop foot in left leg and have limited use of my left arm and hand. I would advocate stretching exercises with your legs. Throughout all my research, I feel the nerve roots in C-5 and C-6 developed “palsy” from the surgery itself (even tho they said nerve roots intact). It seems these pathways get disturbed and recovery is difficult. Exercise definitely makes a difference and yes, you probably would have ended up in a wheelchair without the surgery. They tell me Cervical is easier to recover from than Thoracic. They say a hospital in San Diego can insert paddles to stimulate the affected nerve roots. I have not explored all of that yet. I do drive, walk and have a noticeable limp.
Thank you for sharing this Tina. I have no doubt I would have ended up in a wheelchair in a matter of days as the anaesthetist audibly gasped when I walked shakily into the operating theatre prep room. I wish you good luck for the future, especially if you pursue the nerve root stimulation path.
Yes, as i was regressing and relying heavily on a cane to walk before surgery, I had read that if you lose the ability to walk you end up in the wheelchair because of the damage the AVM inflicts. Walking is everything and if they tell you what you get back at 2 years is it, do not believe them. Progress is accomplished even years later with continued hard work. It took me 4 months after surgery to get bladder and bowel under control and eventually off of the cane.
I saw danny and mike case sdav fisula looks a bit similar case like me,
It started in Jan-2022 exactly like deep pain in my upper spine beneath shoulders, those were peak covid days, I thought its Sciatica pain And initially same my family Dr opinion.
However just in few days i started loosing my legs motor function on both the knees.
Spine MRI done in a month like end Feb which shows fitsula.at T6-T7 level While i stiill struggle to walk.
Long 6hr Spine Surgery done in Mid March 2022 at Western Toronto hospital.
I went thru slow n gradual improvement start walk with rollator and now use cain when outside. Can drive . However still much heavy legs and pain alongwith constipation and other issues.
I use Pregabalin for neuropathy pain which helps a bit but with side affects . I am now 63 yrs age.
I use to be a tennis player all life and a telecom engineer in Etisalat . Unable to do both after surgery