Hello. My name is Gareth (Gary) and 3 weeks ago, I had an Embolization on my SDAVF. From swollen bottom brain stem to T-7. My symptoms and history should be in my profile, hopefully? Sorry if not, and I’ll edit this post later, if necessary? This all came out of the blue. Untill the 29th March 2026, I was a reasonably health 57 year old. Now, I’m still in shock tbh, that this has happened to me. I am now still pretty much suffering from the same symptoms I had pre surgery. Albeit, I’m not suffering from extreme neck ache or morning sickness. I know from reading other people’s posts, this condition effects us all, slightly differently but I do have a serious concerns, regarding the future and my life, moving forward in general.
What can I realistically expect, regarding recovery. Will I be able to work again? (I’m on sick leave atm) Will my bladder function ever return? Will this numbness subside? How much improvement in walking can I expect. I can walk but I’m very weak, wobbly and I have to be extremely careful.
I know every case is different and I suppose I’m asking how long a piece of string is, but so far, I can honestly say, this has completely changed my life and it’s very difficult to wrap my head around the possible ramifications.
Any response or advise would be very welcome. Thank you.
Edit.
On the 29th march 2026, i was rushed to A+E for urinary retention and feeling sick. A few days prior, id had a R.D.E and had a swollen prostate.
I had a catheter fitted and sent home with the doctor refering me to a urologist and a CAT scan and PSA test. I did notice whilst in A+E thst i felt numb.
Long story short, the next 2 months my symptoms got worse and it was evident, it was not caused by my prostate.
My symptoms were/are still.
Extreme numbness, particularly on my left side. From head to feet. Left hand shakes. Feetb feel like I’m wearing soaking wet socks. Coldness. Particularly on my buttocks. Loss of sensations around my penis and bum. Having to use a self inserting catheter. Cold feeling on my face, lips and chin. Very itchy chin but comes and goes. I have to drink thickened liquids for now, untill i get reassessed. My left leg feels like i have rubber bands wrapped around it and also very heavy to lift.
Walking is ok, but very wobbly and i have to really be carful. Also after a short distsnce i fell very fatigued.
Before my operation, i was nearly fully paralysed so i am better than before procedure but pretty much the same, as of this post. All this happened over just 2 months without any real prior warning.
Hello Gary,
I too reveal sysmtoms ASpinal davf at t6-7 in Dec-2021 removed surgically in March-2022,my recovery n other symtoms were slow however able to walk with support within 4 to 6 months, However recovery to Normalisation actually depends on how much nerve damage occurs before and during surgery.
I still have much nerve pain but now its part of life ( It is what it is )
So I am thankful that I can do mostly all my requirements myself like walking , routine things drive etc etc . However lifecannot be same as before As i am now 64 yrs
Keep in touch And do your best efforts Esp Physiotherapy helps resolve much
Firstly, I’m sorry you’re going through this, it’s definitely not fair, but positivity and steadily working at recovery can produce good results. Have you seen the thread at Just had surgery for spinal DAVF ? A number of us including me posted about our experiences which may be of interest.
I’m now 11 months after my spinal laminectomy and sdavf removal and I’ve been walking well again for the past few months but can’t run, the pins and needles and lack of sensation in my legs remains but is slowly, incrementally, improving and I can now (for the first time since 2020) can feel differences in ground texture through my feet even when wearing trainers. I recognise your mention of feet feeling like you have wet socks on. The ‘saddle area’ is proving slower to improve but is improving. Like you I was fully catheterised, shortly after my operation upon going home in my case, and after a month had a failed TWOC and given a large supply of the single use catheters. I have gradually used these less and less and now generally only when leaving the house or about to leave a destination to come home as I still don’t void fully when my bladder is full and I hope to see continued improvement. Bowels are sluggish with movements 5-6 days apart and I’ve only seen small improvements yet with ED. My leg and feet nerves still spasm, particularly at night, but the intensity is reducing as time goes by. I was told at the beginning the saddle area and pins and needles in my feet would be the last to come back and I’m not expecting this for another 12 months this or so.
I went back to work after 5 months but working from home entirely and count myself extremely fortunate despite the associated isolation that my job can be done online, most of my team and stakeholders are in other parts of the UK, so there’s been no pressure as yet to visit the office and I haven’t since a May 2025. That flexibility is one of the few perks of my job tbh and is the main reason I’m still there.
I’m determined to get running and driving again in the future.
Thank you for replying Ahmed and explaining your condition and subsequent rehabilitation.
I’m a Chef and atm i cant possibly imagine working again. I really hope i will be able to in the future.
The thought of loosing the abiliy to work, scares me the most. I’ve never been unemployed before.
As for rehabilitation, I’ve seen literally two physiotherapists at Hull Royal Infirmary. They assesed my ability to walk. And that was it.
Should i try to do individual body exercises or just concentrate on walking for now?
I’m plesed to hear you’ve made a good recovery and adapted to to your new life.
Brcause I’m at the begining of this new journey l, I’m still trying to come to terms with it all.
Thank you and cheers
Hi Danny.
Thank you for replying.
You mentioned spasms. I get a feeling when I’m lying down. It’s like all my leg muscles (both legs but not at the same time) tighten up for a second. It’s like a jolt. Hard to describe. Also get a similar feeling down my bsck. Is that a Spasm?
I’m really pleased to hear you’re still working. Great.
Unfortunately I’m a chef and i honrstly can’t see how i could possibly do my job, unless i significantly improve?
Thank you again and yes to a furure call.
Cheers and good night.
I’m going to watch Canada v Qatar and go to bed.
I’m not sure if spasm is the right word or jolt, but we’re experiencing the same things (mine legs and feet) and at time it can be enough to lift the leg clean off the bed sheet.
I imagine there’s plenty of walking with being a chef, possibly lots of movements left and right too. If that had been me, and I’ll just be totally honest here, I think I wouldn’t have been confident in returning to that job prior to around the 8 month post-op mark and even with that the urinary urgency would have been a major source of anxiety.
I’m also watching Canada v Qatar, not that I know any of the players. What are we like!?
The spasms or jolts? Make me lift of the bed too. It’s like a shock without electricity!
I’m not in pain though, which is very good indeed.
I literalky run around in my job. Speed is the priority and also, my left hsnd shakes and is numb. That’s my chopping hand lol. I’m primarily left handed but luckily i use my right hand for drawing. Thsts my hobby and it looks like I’ll wont loose thst ability.
So yes, I’ll need to make a massive recovery to be able to work in the kitchen again?
Anyway, thank you again. Canada has just scored. Watching the mstch and then bed.
All the very best.
Like you, I had the same in my 53 year. Healthy till 52 years of age. Like a bolt from the blue as you say. There were no embolization possible in India then. So had to undergo open spinal surgery which was carried out successfully.
Bowel s came back after 8 years ( complete recovery ) bladder first to return to normal within a year .
With physical therapy , balance and walking and I was walking reasonably well (with intermittent claudication ) after 7 years - wobbly walker till then
Now I am entering a phase where I have accelerated muscle wastage, numbness and difficulty walking distances more than 1.5 kms and higher recovery rates.
Will keep this group updated.
It is bad now that I am losing confidence . I fear I may have to stop doing the desk work that I do go sustain my family.
Welcome to AVM survivors! I’m blown away by the Spinal guys & girls running in to help you out. You’re in great company!
I’d find out about having appropriate rehab therapy. I guess ask your GP for a referral. Rehab after a stroke, knowing what’s important to rebuild and how, is essential and I’m going to guess that there’s no less need after back surgery of any kind. If they’re a bit weak on pushing it forwards, insist that you need to get back to work (even if that seems unlikely as a chef).
My second thought is that spinal injury rehab might be pretty specialised, so ask explicitly about how to access spinal injury rehab. Let me know how you get on because I always like to learn how to help others.
Hello Karthv.
I’m glad you mentioned your bladder and bowel function.
After my embolism i did have 4 full days of not being able to empty my bowels. It was an horific experience but on the 5th day, i managed a no 2, with the help of laxatives and 2 nurses! Honesty i want to forget the psin i went through.
However i have managed to go for a no 2 since thst day, so i think I’m very lucky.
Unfortunately my bladder isn’t working, so it’s great to hear thst your function returned in one year. Not so reassuring to hear 7 years lster, your walking is still wobbly.
I’m very sorry to hear you are now having more issues and it might jeopardise your job.
I do hope you somehowv find a way to make a living in the future.
All the best and thank you for replying.
Hi Richard.
I am in contact with the SIA. A lady is writing to my G.P, regarding physiotherapy and rehabilitation.
Unfortunately I’ll be placed on a waiting list but it is a start, nonetheless.
Also the Spinal Injuries Association have been very helpful in other ways too and a certain individual who manages my neck of the woods!
I was on enemas a whole year… thank God that resolved… I am developing new neuralgic problems like
Pain across my chest which looks like it wont leave me (shingles like pain…)
I guess we gotta make do with what we are given…
Good luck to you too and wonderful of you to write in and stay in touch…
I’ll definitely keep this forum updated.
Because i could find so little on the internet about individual experiences, post operations.
Plenty of information about SDAVF itself but not the long term outcomes.
I know this condition is very rare but to hear other peoples experiences with spinal fistulas is very good and will definitely be helpful for any future sufferers of this condition and myself!
All the best Karthv and i really hope you can manage any new symptoms moving forward.
Cheers
Hello Gary. I’m sorry to hear about what happened. My embolization occurred in February 2025.For me, I was paralyzed below the umbilical. Today I can walk again. I can’t run. I have some urinary retention, so I self-cath at night before I go to bed. For me, it was repetition and physical therapy two times a week that helped. I’m still in physical therapy two times a week. It’s a long and slow recovery.
Hello LJ,
Good to know u start walk, though recovery usually slow Esp coz Spinal nerve damage however you need work hard in physio . Try do extra days exercises at home daily just few minutes.
Also if u kept yrself active in some support walking n physio u can stop self catherise And better start pee as normal even if u need go washroom many times as chances of Urinary infection subsides as well , i immediately stop self when i left Hospital .
Hi LJ.
Thank you for telling me your story, so far.
I’ve only been out of my house a few times since i left Hull Infirmary, 3 weeks ago.
My walking is very wobbly and shaky. So much so, my neighbour asked me to try her walking stick. I’ve never used one before but i must say, i think it’s helped. I’m still feeling extremely fatigued tho, after any physical activities.
I’m glad to hear your urinary function has improved allot since your operation. Unfortunately i definitely can’t go without using a self catheter.
Its early days for me, and i really hope I’ll improve greatly, as time goes by. And I’ll try to work on light exercises and literally push myself.
All the best
Gary
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