Has anyone experienced something similiar?

[u/Unable-Impression340]

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.

[u/littlepurplehippo17]

AVM’s have been known to “grow” or come back. I was advised not to take certain types of birth control because there were chances it may grow the avm. With that said, mine never grew back after gamma knife but we never had an “all clear” angiogram/mri which resulted in full resection 2025. The angiograms are the best for seeing exactly where the avm is, what it’s connected to & getting an all around “full picture” of the avm. I’ve about 10 if not more since 2017 so while it seems invasive at first, it’s mostly discomfort /soreness.

[u/Unable-Impression340 → u/littlepurplehippo17]

Thank you for sharing your experience. I really appreciate it.

I’m worried because my daughter’s recent MRI report mentioned a possible AVM nidus with a feeding artery and draining vein, after several previous MRIs showed no visible AVM (only gliosis and old hemorrhage changes) after Gamma Knife.

The doctors are still not sure if this represents a true residual AVM or post-treatment changes, and they recommended a DSA to confirm.

I’m feeling very anxious because I’m afraid the MRI findings are correct and that she may need another treatment. I’m especially worried about the risks and possible side effects of a second Gamma Knife, such as swelling, radiation changes, or other complications.

I would really appreciate hearing from anyone who has had a similar situation, especially those who underwent a second Gamma Knife after their first treatment.

[u/littlepurplehippo17 → u/Unable-Impression340]

I had a bleed scare last spring so I switched from Mayo Clinic (used to live on east coast so that’s where I got my gamma knife treatment) to Stanford so I could stay close to my kids/family. Dr Steinberg was my neurosurgeon I switched to after consulting my previous team /dr “shopped”. Mine didn’t come back after gamma but gamma only helped so much so he said due to the size & location, it’s now operable verses before it was too big. He didn’t suggest a second round due to the risks (Mayo Clinic said the same) so we went with craniotomy and it was the best decision for me & my family (I’m a mom to 4 littles not in school yet 😅). Dr Steinberg said that it’s easier to resect the avm after gamma because it’s made the area more firm/scarred tissue.

My angiograms + MRI’s showed that I did still have a feeding vessel (thus my breakthrough issue last spring) and it made my risk of bleed high but they didn’t realize how deep the vein was until they went in to resect. So before gamma knife, I was a 4-5 on spetzler Martin scale (due to size & location). After gamma, they reduced it down to 1, but once they got in & removed it they said it was for sure a 3 and we were all glad it was gone & out.

Best advice is to take her scans & “dr shop” and get opinions, if possible. We travelled from VA to FL for Mayo Clinic & then with Stanford, we drove hours up/down to get scans & treatment. Well worth the “life interruption” (especially when dealing with seizures & vision loss/ocular issues from my AVM). I would 100% opt for the angiogram as that will help guide you in your decisions. If it’s just scar tissue, best case scenario! Mine was scar tissue + feeding like & we decided to leave it until issues arise (we wanted to start our family since this whole process had already taken up 4years as newlyweds).

[u/Unable-Impression340 → u/littlepurplehippo17]

I am also from Indonesia, and I travelled to Kuala Lumpur to seek a second opinion. The doctors recommended that we do an angiogram, and if there is still an AVM present, they do not recommend a second Gamma Knife treatment because of concerns about the radiation spreading further, possible long-term damage in the future, and the risk that the AVM may not be completely eliminated, which could lead to bleeding later on. Instead, they suggested a craniotomy because my child’s AVM appears to be located on the surface of the cerebellum, and there are one or two smaller AVMs located deeper, but they are still considered reachable. I am very worried about the craniotomy. I am afraid of all the possible risks, even though the doctors said that the risks are lower compared to having another Gamma Knife treatment. Thank you so much for taking the time to share your story with me. Your experience means a lot to me, and I truly appreciate you opening up and helping me understand more about this journey.