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Experiences with AVM and its treatments
Years ago when i was in high school i had my first migraine with left vision loss, aura. But i didn't pay much attention to it back then. My migraines, which had always been a part of my life, started to feel different. The vision auras lasted longer and my headaches were unbearable.
Now i am 21 years old. After countless doctor visits, scans, and frustrating moments of not being taken seriously, I finally got my answer: a brain AVM in my right parieto-occipital region. The words felt heavy. I had a big decision to make. I feel lucky they found it before it could rupture. The doctors said there is a high chance of losing my left-side vision through the procedure.
Now, I’m preparing for gamma knife radiosurgery, and I won’t lie—I’m scared. Not of the procedure itself, but of what comes after. The waiting. The unknowns. The possibility of losing my left-side vision and the fear of how what will change.
I don’t have all the answers, but I know I don’t want to go through this alone. So I’m here, hoping to connect with others who understand what it’s like to live with an AVM—to share, to listen, and to figure out this journey together.
If you’ve gone through this, I’d love to hear your experience. What helped you get through the uncertainty? What surprised you about the process? And most of all—how did you learn to trust that you made the right choice?
Looking forward to getting to know all of you.
- Reni
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Hi, Reni. While I do not have personal experience with AVM a co-worker of my daughter had what I believe may have been AVM. He was planning to fly out to Vegas to see his brother and family but wanted to get checked out for the weird headaches he had suddenly developed. They scanned and found a tangle of blood vessels they were afraid could rupture so no flying anywhere right then. In short order he had surgery to remove the tangle, spent about 3 days in the hospital and another 2 weeks recuperating at home. He has not had any further trouble and all of the potential things that could go "wrong" aka: deficiencies he might experience afterward never happened. I think the bottom line is to trust your surgeon and doctors. If you aren't comfortable with your current doctors, get a second opinion. Even if you feel you are getting good advice, sometimes a second opinion that re-enforces what you have already heard and decided helps to reassure you as you go into a surgical answer. None of us like facing the unknown but I pray you will find, like most of us, the fears we imagined disappeared entirely or were not as big and bad as they seemed. With good doctors taking care of you and a positive attitude to overcome whatever life sends your way, you will do fine. At times like you are facing I have relied heavily on my faith and found God is there with me regardless of the outcome. His strength is sufficient for all of this life. My prayers are with you as you go through this. You are not alone; you just can't see the support around you.
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1 ReactionHi Reni, I too have not had this experience, but my daughter has and is now watching another. Hers are now found toe related to FMD Fibromuscular Dysplasia. She had a great surgeon at the Mayo clinic in Portland area but is now seeing a new neurosurgeon here in Boise area. This new one will be watched and hoping to fix within the next 6 months with a coil procedure. Not sure yours can be treated this way. I have MA and have had shots in my eye for more than 10 years to keep my vision, so I totally feel your fear of loosing your vision. As stated above, look to your surgeons, find the best, someone who has performed many, many successful ones, and pray !
God Bless, Cheri
Hi, @cheri53, and welcome to Mayo Clinic Connect. I can imagine feeling a lot of fear if I thought I might lose my vision. Glad your shots seem to be working to help you keep yours.
With all the acronyms in medicine, I wanted to confirm that you have been diagnosed with monomelic amyotrophy (MA)?
Lisa,
I have been diagnosed with Macular Degeneration. Yesterdays appointment was another blow, now must see a glaucoma specialist.
My daughter was diagnosed with FMD- fibromuscular dysplasia. It includes a tendency to develop aneurisms, primarily cranial, but can also effect the kidneys , arms, leg and the aorta. My grandfather and his sister both passed from aortic aneurisms, but more than 50 years ago. my mom and one of her siblings had theirs repaired since we were told it was a genetic issue.
My daughters was also attributed to a 'genetic' component. My search is to see if these two issues are in anyway connected.
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