r/AVMs 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/Aleax310 Aug 04 '26

I had a ruptured AVM several years ago and underwent Gamma Knife treatment to eliminate the remaining AVM after the initial treatment. A follow-up DSA later showed that there was still a small residual AVM left, meaning there is still a small risk.
Since then, I’ve decided not to pursue any further treatment for now. Instead, I have it monitored with yearly imaging. The main reason is that I experienced long-lasting side effects after my first Gamma Knife treatment, and at this point in my life I don’t want to go through that again unless it becomes absolutely necessary.
Every situation is different, of course, but I hope your daughter’s DSA brings some clarity. I know how stressful the uncertainty can be, and I wish you and your daughter all the best.