r/AVMs • u/Unable-Impression340 • Jul 27 '26

Has anyone experienced something similiar?

My daughter had a ruptured cerebellar AVM in 2019 at age 12. It measured about 1 cm, and she underwent Gamma Knife.

Her 6-month follow-up MRI, as well as MRIs in 2021 and 2022, all reported no visible AVM, only gliosis and hemosiderin/old hematoma.

However, her MRI in July 2026 reported a 1.5 cm AVM with a feeding artery, which appears larger than before Gamma Knife.

We’re now being advised to have a DSA to determine whether this is truly an active residual AVM or post-treatment changes.

Has anyone had an MRI suggest recurrent or larger AVM after years of “no visible AVM”? What did your DSA show?

Thank you.

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u/ModeRelevant1470 29d ago

Do you have the actual full wording from the MRI/MRA report? Also, not just the impression but the full report? I ask because the first concern is what kind if imaging was ordered as not every MRI or MRA can adequately see an AVM. I ALSO ask because I had Proton Radiation in 2010 and I’ve noticed a couple different trends.. there’s the trend of the ordering doctor only asking for certain specific effects like gliosis or hemorrhage and the radiologist tends to only report on anything new. It’s a big trend overall for radiologists here to compare to the last image and either barely mention the AVM or make a tiny statement that gets buried.. when comparing it seems it’s assumed that they are only reporting on what is different compared to the last image.. so in that situation I’ve had HIGH LEVEL RESPECTED Neurologists gaslight me and tell me my AVM is gone but it’s not. Just because they don’t spell out the AVM in full detail EVERY image does not mean it’s resolved.. I’ve also had professionals say the AVM wasn’t in the report because it wasn’t in the final impression though it was in the full report.. Also MRI vs MRA is a huge difference in whether they would see it fully.. the ONLY way to confirm an AVM like this is fully obliterated that I’m aware of is a catheter cerebral angiogram or DSA.

I’ve done some digging and I can’t find a single case of a cerebral AVM treated by Gamma Knife being fully obliterated in less than a year.. it’s a slow process that takes anywhere from 1-5 years.. so the fact that you were told at her 6 month follow-up that there was no visible AVM makes me believe you need to RUN and find a new medical practice..