I am two years post surgery (spinal dural embolization) for AVF in my cervical spine C1-7…miraculously I am able to run again, regained feeling in my feet and hands and my body is doing much better in general than before the surgery. Took quite some time - a good year and a half or so to regain strength in my right arm/shoulder again but its coming back. My mental health/anxiety and relationship with my husband also suffered greatly. My husband and I have both been doing counselling therapy (with rapid eye movement therapy) for over a year now - working to build our relationship and I’m working through the post traumatic stress from the medical procedure and challenging recovery process. Anxiety/depression and lack energy definitely impacted my ability to work as well as just not being physically able. Two years later and I’m just starting to think about employment opportunities that might work for me now. All the best in your recovery - its certainly not an easy or straight forward path but the more avenues of support you can tap into the better!
Hi Danny,
I am Franz from Melbourne, Australia. I am also had Spinal DAVF at T10 diagnosed with whole spine MRI in Sept 2015 when my age was 63. The symptoms started several years bevor, but the doctors are requesting for CT scans of my knees, then MRI of the lower back. Nothing was found and they told me it was old age 
Please read my full story in my profile on this website.
Embolization using angiography was tried in Oct 2015, but could not reach the DAVF. 3 days later I had a laminectomy done at T10 to cure the DAVF. ITB pump implant in February 2020 to control my spasm and spasticity. Thereafter my leg muscles are getting stronger and I can walk better. Still having balancing problems and doing daily exercises to improve my walking and balancing.g
My story:
The list of issues in my body that started approx. 7 years ago is quite long and slowly getting worst: - Sometimes got knee pain when going up/down stairs – no problems diagnosed with X-rays of the knee or leg. All cartilage and mechanical functions are OK and no arthritis. - Difficulties to pass urine – diagnosed by Urology, nothing wrong with prostate or urinary track. - Frequent constipation since past 2 years – Colonoscopy and Endoscopy proved nothing wrong with my digestive system or colon. - Can only walk for a distance of 7 Km since Oct 2014 – There after my legs are just weak and cannot move, but no pain. MRI of lower back and hips is showing nothing wrong. - From January 2015 I can only walk 5 Km, also starting to get pins and needles in booth legs and from May 2015 only 3 Km. Pins & needles feeling in my foot till knee. Sometimes feeling like have socks on. The doctors said that they cannot diagnose anything wrong and I have to just live with it because I am getting older. - Then I went in June 2015 on a one month holiday to Europe and after returning from holidays I can only walk 1 Km and the pins and needles was than from legs to hips. I then consulted a different neurologist team and finally they discovered that the electrical signal flows from my brain to my legs are slow (Just like a slow internet connection). In September 2015 they decided to do an MRI of my brain and the whole spine. They discovered that the spine cord is swollen between T2 and T10. Inside the dura of my spine cord near T10 there is a connection between an artery and a vine (DAVF). This connection is not supposed to be there and I might have it since birth – only causing issues as I grew older. In 2017 the feeling on my legs improved, but at the same time I starting to have spasm on my leg muscles. The spasm slowly getting stronger and causing difficulties to walk. The spasm was controlled using Baclofen and Dantrium tablets. Every few months the Baclofen tablets dose has been increased to reduce my spasm.
I am now 72, I can walk short distance with a walking stick, because of balancing issue. Long distance walk I use a rollator because I can walk faster and less risk of falling. I can still drive a car. I retired at the age of 66 after working 45 years at the same company.
Kind regards,
Franz
Hello All,
No body shared whats cause of spinal davf said by neuro doctors, In my case i see bo clear explanation by my surgeon or neurologist except at times they say its very rare condition like max 4 in a Million.
Plus my dr said it normally cant happen without any major spine trauma or injury which i dont rem happen to me, altho use to be sportsman but only once a had a fall from stairs on my back with hair line tiny fracture in spine lower back which healup self .
Request you fellows share what cause u told by neurologist
Hello @DannyC
Hopefully you trying hard and with luck find much improvements, how things going like walking with support or how managing things.
Are you still doing catherise self , i advise try natural pee even if some retention then do go pass every 2 hrs is better then catheter, coz it mostly cause repeated uti .
Do update and if better come in contact via whatsapp with me. Coz i see you hv same sdavf what i went thru almost over 3 yrs ago, my status bit improve but not upto my satisfaction.
Syed
Thank you Everyone,
I wish you all the very best for your continued recovery. It looks like we all, me included, are on a journey of discovery we never bought a ticket for!
In answer to @Ahmed I don’t think the medical professionals truly know what causes these malformations but perhaps with more study of people like ourselves they’ll get there.
I’m two and a half months post-op and definitely getting stronger but it’s a slow and non-linear. frustrating, process. My weaker right leg had improved in strength and usability in recent days only to be hardly movable/controllable (like a stroke) one morning after a night out. Can it be that just a few drinks was enough to affect the nerves so dramatically and quickly? It’s the only variable I can think of. Fortunately functionality is slowly returning again a few days since. Generally speaking I can walk now unaided indoors although without confidence as sometimes a leg will randomly give way and balance is always very much off. I walk short distances with a cane when out although the ongoing bladder and bowel issues make me anxious to be out so I’m taking solace from @tina2 that this may start to truly improve in the next couple of months. The whole saddle area is best described as poor although frequency of self-catherisation is reducing, sensation in my legs is poor too and the pins and needles in my feet remain (exactly as @Franz_K described, especially that feeling of always having socks on) although I’ve noticed the regularity of what I can only describe as strong and uncontrolled nerve firings in my legs (spasms?), especially at night and when in bed, is reducing allowing better sleep, so maybe with continued exercises this will all improve. There’s talk of a program with a specialist spinal clinic in Stanmore, UK and I’ll be starting some counselling this week related to the mental trauma over the past few years too significantly contributed to by this sdavf.
Onwards and upwards hopefully.
Danny
Hi Danny,
Let’s hope your condition will improve . . . . . stay strong
Franz
Alcohol subdues the nerves but you can still drink. Just be aware the legs are recovering and gaining strength. All of the firing in the legs is just your body rewiring. Your body heals thru your spinal cord as you sleep and you will see a vast improvement at 6 months you probably will never have full strength back but the bladder and bowel movements will improve. In my case I was in surgery about 17 hours total over two days as the surgeon had 6 other operations going. That is a lot of saline solution and that is part of the bladder problem. Keep exercising and improving blood flow. You will be driving within two years.
Hi Danny,
While at home, I Had an aneurysm in my spine that burst at my T12 vertebrae. by surgery time my whole lower half of my body was numb, it was very traumatic with the pain , then numbness. When I left the hospital, my legs were very weak and I used a walker until i was able to move around better.I was diagnosed with an AVM. my lower half of my body was in extreme pain while arriving at the hospital. after 7 hours of not a whole lot done, I was transferred to UIC down town Chicago. the lower half of my body was going numb so they did some emergency surgery, found the Aneurysm. After months of PT I did try to go back to work, I lasted 3 months and I couldn’t do it anymore , I’ve had three mor surgeries since then. I’m still in pain to this day from my bellybutton to my toes!. It’s something I’ll deal with indefinitely. But I am so grateful to be seen and alive!… for everyone out there who experiences this weird kind of injury/ incident, hang in there!.. and I wish you well!.. .. .