Is there anyone out there who has been diagnosed with an avm and not had treatment? What will happen to me if I leave it go untreated? My doctors did the surgery and clamped the vessel but it didn’t fix it it just spread again…now they tell me there’s nothing they can do to help me and tell me people live fine with it for years…is this true??? Or am I living a life with a ticking time bomb??
Zoe..you need to find out the location of your AVM and if the doctor's did the only treatment available for your AVM. If I were you, I would make an appointment with your Neuro doctor who do your surgery and have a long conversation. Explain to him that you need to know more infomation about your AVM so that you can feel at peace.
Zoe, when I hear "there's nothing they can do," I think "second opinion." It may be that there's nothing to be done, but it's better to hear that from two or three doctors before deciding just to live with it. Ask the Australia group to recommend doctors for additional opinions.
I was diagnosed w/ an AVM when I was 13. Lived w/ anti-seizure meds until age 41 when I was able to have my AVM successfully occluded. I had it embolized which shrunk the AVM, then I had Stereotactic RadioSurgery (like gamma knife) which occluded the AVM. The probability of an AVM rupturing is 4% per year for every year you have the AVM. Since I am in my 40's it was becoming too risky to leave it in given that i had it since age 13. The risk of stroke gets worse as you age. Some people have AVMs their whole lives and don't even know it. The main factors are how large, location and what your docs are telling you. Don't be afraid to go get a second opinion.
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