Cervical Spinal AVM (C1-2)

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.


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Welcome to our group, and wow, you have had a journey with your AVM! I can’ really help out to0 much, my AVM was left temporal, on the inside of the lobe and was treated successfully by gamma knife. They can sure be precise with the radiation, although not without risk. Mine was damage to surrounding brain that had not been damaged by the bleed. The spinal cord is a dimension I didn’t have to consider.
We do have a Spinal AVM group within the forum in the top right hit the three lines, then groups and you will see it. AVM Survivors Network. I really need to learn to link groups!

Great you are here and hopefully some of us can help. Take Care, John.

Thanks for the welcome and the information John!

Hi Erica,

I’m hoping that some of the folk in the @Spinal group may have had radiotherapy. I have to say that it isn’t a treatment that I remember reading about for a spinal AVM but I’d say that just pushes you a bit further into the “rare” category :grimacing: as if you didn’t know that already!

It sounds positive that the neuro team are recommending it but we all know how difficult these choices are.

Very best wishes,


Hi Richard,
I have been treated using radiotherapy for my pituitary macro-adenoma in April 2015 to kill residual tumour after surgery in February 2015. The radiotherapy treatment was successful and until now the tumour did not regrow,
I had an ITB pump implanted in February 2020 to manage the spasticity in my legs because of my Spinal AVM problem at T10. ITB = intrathecal baclofen. Since the ITB pump implant I can walk better and further before I need to sit for a rest.

Best regards,

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