Still Facing This 19 Years Later

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Hi everyone,

This is a bit of a rant moreso than asking for specific help, but here goes…

In August 2021 I had my third dose of Gamma radiation following my second AVM brain bleed. Last year, my doctor was still seeing a vein on my MRI but he couldn’t tell for certain if it was a healthy one or part of the AVM. This month will be 4 years since the last Gamma Knife surgery. My doctor wants to do a scan next month, but I’m getting married in September so the scan will have to wait until after the honeymoon. (Definitely not the energy I want to go into this wedding with! Some people choose roses as a wedding theme, but my theme is involuntarily becoming “medical doom and uncertainty.”)

I guess I’m just looking for other opinions and experiences before my dreaded next MRI. Do you think it’s gone? My first two treatments weren’t long term solutions because my then-teenage body was still growing, and it grew back the AVM. Has four years been enough time for any of you to have success with the Gamma Knife? I don’t know that I can face more surgeries or even the confirmation angiogram if it appears that the AVM is “gone.”

Thanks for listening.

-Julia

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Congrats on the upcoming wedding! My AVM was a grade II and confirmed obliterated in 27 months, but that was the prediction based on the size and the fact they were able to use a little extra radiation as there was some damage around the aAVM from a bleed. They weren’t worried about damaging brain immediately adjacent to the AVM. They had referred to it as a void, and now say artifact. I would much rather have an artifact than a void in my brain!

I am leaning towards good news for you at you next scan, and an angio to follow! My fingers are crossed!

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Thanks, JD! I’m always concerned for myself because of the veins in the AVM. In 2012 they discovered “two areas of concern” i.e. two veins, so they treated with Gamma Knife. In 2021 after the AVM grew back, the venous embolization failed because there were two veins instead of just one. I’m really hoping my whole team talks among each other and that both veins were treated with the 2021 Gamma Knife!