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AVM Survivors Network

Untreatable AVM

I found out I have a large AVM (cerebral) by accident 22 years ago when I had an MRI for other reasons. I’ve done nothing about it (except choose not to have children, happily) except to try to stay informed and aware of both symptoms and current treatments. But as I still don’t have any obvious signs or symptoms, I’m inclined to continue to not do anything. The small chance of a bleed doesn’t seem to warrant trying to fix something that isn’t causing any problems and only has a small %age chance that it will. Granted if it does bleed, it will not be good. But esp. in your case, if it’s inoperable, I’d only look for other treatments if it starts to cause real problems. Maybe just me.
Hope you are well.

I am sorry to hear about your situation, a lot of times the inoperable AVM’s tend to be the hardest to treat but it doesn’t necessarily mean that there’s nothing you could do about it.Some doctors are willing to take a risk in treating it, i have a friend i met on an AVM forum on Facebook who has an inoperable AVM n his thalamus but the radio oncologist took the risk of treating it with radiation therapy but he has to undergo embolization first prior to the radiation treatment toreduce the risk of bleeding during treatment. hope tis helps prhaps you would like a second opinion.

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Hi just seen your comments I to have an avm in my spine caused by a cycling accident I’m in the UK I was reading a local news letter when I seen a report about a new type of treatment for pets (dogs) who have AVM it uses water and a laser it said it’s the most advanced in the world here in the UK ,it reported a dog that struggled to walk then after treatment it was ok, just shows new treatments are just around the corner. I have myself chose not to have surgery as risk is to high at 50% I take herbal approach I take diatoms food grade in a drink form it helps keep my arteries clear stops colestra build up ,try listening to Dr mandez he’s on youtube there are many others that give free advice on health matters Barbra O’Neil is another and there are many more hope this helps

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Hi there. Just wanted to say that I am in a similar position. I have an inoperable AVM of the Cerebellum and all the docs advise to leave well alone. I’ve known about it for 40 years now since it caused hydrocephalus when I was younger. But it hasn’t ever bled and I suffer much less day to day than many others here. I have a very positive attitude to it and like to believe this helps me.

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If I may inject some optimism:

One doctor’s “untreatable” case is treatable by another doctor.

Even if right now, it’s best to leave it alone, the methods, materials, and technology for these types of treatments are evolving at a rapid pace. These may be more easily treatable in the not so distant future.

I was diagnosed after initial rupture of first cerebral AVM. Then after docs fixed that problem they opted to use Gamma knife on second (they don’t cut into skull for gamma knife). Ultimately I had another bleed that was fixed with a craniotomy, but their are a number of treatment options in many cases. Praying you and with docs will come to a workable solution! Blessings as you continue!

Hey everyone, I just wanted to note that @solvisunshine started their post on a separate thread that was dated back to 2010, so any reference you saw to Morgan and Dr Spetzler was someone else’s conversation back in 2010.

I’ve tidied up the split, so this thread just contains the info about solvi’s experience. Have a re-read and see if that leads you to other thoughts about how we can support. :heart:

Hope this makes sense.

Very best wishes all,

Richard