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AVM Survivors Network

Anyone completely recovered from SDAVF after being paralized?!


#1

Hello everybody,
I’m new here, this is my first topic, and this is part of my story (sorry for my broken English)
I’m 29 yrs old. I was complaining of progressive asymmetrical lower limbs weakness, doctors couldn’t diagnose the cause but they suggested to give me high dose steroids :scream: … Within hours after the initial dose I became completely paraplegic with constipation and urine retention :sweat: … Then I was diagnosed to have Spinal dural arteriovenous fistula (SDAVF)
I did angio-embolization in Feb,2017…From that date till now I’m on physical therapy, taking no medications… Now I can walk few steps with crutches, But can’t even stand unsupported, micturition and defecation are BIG problems.
I have read about SDAVF and found that it has high recurrence rate, so I’m not willing to do any follow ups :expressionless: as I don’t want to bo shocked again
I wanna ask if you know anyone who completely recovered from complete paraplegia!!
Thank you :disappointed:


#2

Hi Ghazi,
Your english is just fine. I had paraplegia however, it was intermittent. I experienced feelings of numbness and walking was like slugging through thick sand. I had a lamanectomy in Sept/2016 but that procedure was not successful. I had an angiogram in Dec/2016 when I couldn’t walk or stand. I haven’t completely recovered but I can walk. I experience the numbness, tingling and burning from the hips down. The nerves are still healing according to my neurologist. He says it can be years and to get plenty of sleep and be as active as possible. Good luck, recovery can be along journey but it will make us stronger.


#3

@Ghazi Welcome to the group. You English is great! I am so sorry this happened to you.
I have a DAVF but in my brain. a few months before my avm formed I had a massive stroke deep in my brain and was paralyzed. I was 43 at the time. I am have full use of my body one side is weaker but seems only I can tell.
There is a current clinical study going on the United states inputting stem cells in the brain and its been helping people who have had paralysis on one side of their body. Have they tried Gamma knife to shrink it? Is it sealed completely from the angio/embolization. One thing was adding coconut oil to my tea daily helped my brain heal.
Hugs
Angela


#4

Hello Ghazi,

yes, the embolisation with glue can work. But sometimes, caused of the arterial pressure, new SDAVFs can rebuild. Had some embolisations. One day, a neurosurgeon told me: The only perfect final way is a laminectomy. So I had this 2013 (2x) laminectomies and the beast is killed. Hope you are doing good, and dont have fear of doctors - they can help you. Best wishes for you!


#5

Hi Ghazi

My T12/L1 SDAVF was removed by surgical laminoplasty in Aug '17. We had tried embolization first but because the fistula was wrapped around my spinal cord, they had to stop and go with the surgical option. I have made improvements along the way, muscle tone and color in my legs improved. Bladder and bowel came back to close to normal. Still have numbness in upper legs and in feet, plus pain in feet. Started getting more symptoms and felt like I was regressing. During a 6 month post op angiogram to check the status of the fistula, they found it reformed outside my spine. Just had embolization this past Friday and am already feeling improvements. I have renewed issues now with bladder but hopefully time will improve again. I was not aware of the chances of re occurrence. Even when I was waiting for the post op angiogram I had two doctors tell me the chance of a problem is in the single digit percents. Unfortunately I was in that single digit percent. So as difficult as it may be, getting that follow up is probably a good thing and maybe they can find something to fix that can help in your overall healing. -Chris