I have a spinal avm/avf predominantly in the conus region. I suffered a rupture last year, whose bleed advanced cranially and i had a brain haemorrhage and also developed hydrocephalus which was surgically managed. I did not suffer any neurological deficits from it. I went back to normal in a few months, the only symptom i had was pain which subsided. I insisted my doctors to perform an embolization since I didn’t want it to happen again. My epidural fistula was embolized but the conus fistula was not. Since the embolization I developed symptoms which I never had, I can’t currently walk because my legs are extremely weak and spastic, I have urinary retention and constipation. The doctors say they can’t do anything anymore since treating it will definitely cause paralysis. Its has been 5 months since the embolization and i am getting progressively worse. I am just 23, this cannot be my new normal.
Here is the report of my embolization if it helps
Through right transfemoral route. IADSA was performed. Angiogram showed conus/ filar fistula fed by ASA. 2 PSAs and draining into perimedullary veins. ASA was supplied predominantly by RD9 inter segmental artery, PSAs by RD8 and LD10 intersegmental arteries. Epidural fistula at L3-L.4 level fed by RL4 intersegmental artery with intra dural drainage. Osteodural fistula at L4 level supplied by RL4 segmental artery draining into paravertebral venous plexus
SIM-I catheter was used to cannulated RL4 feeder, primary venous sac of epidural fistula was cannulated and ~ 90% glue was injected pedicle supplying RMA axis was noted and avoided during glue injection) complete occlusion of fistula with obliteration of intra dural drainage was noted on check runs.
Hello Sanyaa,
I had spinal davf at t6-7 level symtons started in late 2021 like loosing legs motor functions initially Diagnosed simple schiatica but fitsula marked in MRI well before any rupture which resolved via major spine surgery in March 2022, After surgery took me little over 2 months back on foot but with some rollator support to walk.
Though still quite spasm n pain etc etc in lower limbs but things got much improve after regular Physiotherapy within 6 months.
Take guidance from yr Dr And probly You need to work hard with physio to return towards betterment, Hopefully get improve with efforts.
Regards
Syed
Hello Sanya. I am very sorry that I am hearing your story. I have a 9 year old daughter, she was a very energetic young kid and gymnastic athlete suddenly diagnosed with Spinal Cord AVM and went to embolisation but unfortunately during the procedure the doctor made complications and cut the main artery permanently and blocked it permanently without treating my daughter’s AVM. Now she can not walk normally and she is so weak. Unfortunately AVM in spinal cord is very difficult situation and I truly understand how difficult is for you , as I am a dealing with it every day with my innocent daughter.
In your case it seems that you had an abnormal blood vessel connection at the bottom of your spinal cord. One part of it was treated completely but the most dangerous part near the spinal cord was left untreated because it is connected to a very important artery and they did not take the risk. After the treatment, your symptoms did not happen suddenly, which means the procedure itself did not directly made complications similar to my daughter’s case but Instead, your symptoms have been slowly getting worse, which points to ongoing issue because of the untreated blood vessel problem which is still exist. That is why you may has weak, stiff legs and bladder and bowel problems because of that.
What I can tell you is that Do not lose hope but if you are living in USA, reach out to Barow Neurological Institute in Arizona because they are the number one specialists in AVM conditions. They may give you advice. I wish you a full recovery and again Do Not Lose Hope!
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!.. ..