I was diagnosed with a thorasic fistula in 2016. I suddenly started experiencing difficulty moving my right leg due to spacity i was admitted and then told i had spinal avm. Prior to this in my earlier years i had symptoms like stiff neck and slight bowel problems but the avm was not suspected then. I had embolization in 2017 in India, they didn’t really tackle the problem so I had to do an open surgery which I later did in 2022 which was successful as all the wrong flow was blocked. Two years after the surgery I still haven’t been able to walk properly due to the spacity and the problem of ED and bladder inconsistence is still there. Anyone having similar issues post surgery
You are not alone. I had a laminectomy at T10 in October 2015. I had several Physiotherapy sessions since then. I am getting better, but it is a slow recovery.
In February 2020 I got an ITB pump implanted to control my spasticity. Since then my leg muscles got stronger and the leg spasm is controlled by the Rehabilitation specialist with the rate of medicine flow into the spinal cord.
For more details regarding my issue, you can see in my AVM Profile.
Hi Ditka, sorry to hear about your Spinal AVM. I also tested for having a Spinal Fistula in 2017. I always have felt pain in my angles and legs whenever I had to walk some distance. It all came to a head around the end of 2016. I notice weakness in my legs and started having bladder issues and bowel issues. I started to also lose my balance and started walking with a cane. I final went to see a neurologist and was placed in the hospital that same day. I was hooked up to an IV filled with steroids for days. It took them 5 days and an angiogram to discover the fistula.
After surgery I was admitted to a rehabilitation hospital where I had to learn how to walk with support. I have had numerous physical education to help with drop foot on the left and spasticity.
I feel for you, I still walk with a four prong cane. Unlike you I did not have the pump implanted but I did have a Spinal Cord Stimulator implanted to control the pain. To control my bladder issues I had a Bladder Interim Implant installed to signal my brain that I need to go to the bathroom.
Both of these implants are to improve my quality of life.
I still do not drive because I don’t want spasms to cause my foot to jump.
As my neurosurgeon told me I was probably born with this and it sat dormant for years and came to a head when I turned 60. I am now 67 still taking Gabapentin to help with nerve pain and sometimes I take Bacoflen to relax the spasticity.
Hang in there some people have it worst than us.
