Hello AVM survivors. I am looking forward to the opportunity to connect, especially with any who might have an AVM case similar to mine…although what I’ve learned in my AVM journey is that even amongst the commonality of sharing this rare medical diagnosis, there are many rare and unique manifestations.
I was diagnosed with a cervical AVM in 1990 when I was still in high school, after having suffered a series of extreme head pains and then sudden onset paralysis. At that time, my AVM was determined to be inoperable and not a candidate for radiation treatment, so I was one of the early patients who underwent an embolization to treat the spinal AVM. It was a highly successful procedure in returning motor function, but because the AVM was so large and complex, they could not completely obliterate. However, I returned to a “normal” life. Seven years later, I suffered a bleed of the AVM and during that time doctors discovered the formation of several aneurysms on my AVM. A second embolization was done to stop the blood flow to the vessels with the aneurysms. Again, they were unable to completely shut down the AVM, and the procedure resulted in a stroke-like incident that caused nerve damage and left me with a partial loss of movement on my right side, and a partial loss of sensation on my left side (Brown-Sequard Syndrome). Over the next 20+ years, while I was challenged by physical mobility issues, my AVM remained relatively stable.
In January 2020, I suffered a brain bleed caused by my AVM. Talking to doctors, I realize how fortunate I am to have made it through the bleed with all mental functions intact, but suffered additional numbness and loss of strength in my limbs. I now also have regular issues with “pressure” in the back of my head (near the AVM) and tingling in the back of my neck (where the AVM is located) – that has taken some getting used to without triggering PTSD.
I have been told by specialists at Mayo (in Phoenix) that my risk of another bleed is a higher concern now, but that embolization and/or surgery are not options to minimize. My only option is radiation treatment which has a 60/40 chance of success and a 5% chance of causing damage to the spinal cord. The doctors believe this risk is less than doing nothing, but I’m still trying to weigh the risks as they are unwilling to state definitively that this is what I should do given all the unknowns and the uniqueness of my AVM.
That’s where things stand right now. I’d love to connect with anyone who has any information/experience on radiation treatment for a spinal AVM, but also just appreciative of the opportunity to be part of a community that understands the challenges of managing life with an active AVM.