Hello - My son had an AVM rupture Jan 2025 and subsequent craniotomy to remove AVM in Mar 2025. He was 10 at the time of rupture and he’s now 12. We just had our one year post surgery angiogram and unfortunately, it shows that a small AVM came back, even though the angiogram immediately after the craniotomy showed it was completed removed. Does anyone have any experience with this and how was the second AVM treated in your case? Thank you.
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Hello There,
My son had rupture January 2025 also. We had gammaknife radiation February 2025, we will be in our 2nd MRI (monitoring this August 2026, our angiogram will be on 2028 as confirmatory test.
Last MRI(monitoring we had last yr, it shows significant postive result with his AVM, the gammaknife worked for him. He was 9yo when he had rupture. Now he’s 10.
Praying for a good treatment for your son, maybe you try consider gammaknife..ask your neuro.
Hope it helps. GODBLESS YOU.
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Hi @MW11
The impression I get from reading the stories from other patients on here is that further growth in AVMs occurs more frequently in children than in adults. I’m convinced you’re not alone in this, which is why I moved your post to the Parents and Carers section.
Don’t be disheartened. I think it’s just an extra obstacle that he’ll need to cross.
In general, AVMs do regrow if you don’t get them embolized or resected or otherwise dealt with 100%. Again, this is my belief, based on reading thousands of posts on this forum rather than from my direct experience. (I’m a patient rather than a doctor but I have literally read tens of thousands of posts on here.)
Do let us know how you get on because we can cheer you both from the sidelines and it is helpful and encouraging to others to understand how these things work through.
Very best wishes,
Richard
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Hi, my daughter was treated with embolisation and craniotomy last year after a rupture. We were told if there is regrowth the treatment will depend on where it is and the access routes available. Sending you positive vibes.
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Please pardon that this reply will be brief, but there are so many similarities between your son’s AVM experience and my own son’s. He was twelve with the initial event and first operation, and 14 for the removal of the AVM that somehow regrew. But after that surgery it was smooth sailing. He graduated with a BFA and is presently a teacher beginning his career.
May your journey through all this flow smoothly and may health and happiness surround you and your family.
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Hello,
Sorry to hear that you and your son are going through this. My journey is similar: brain bleed at age 10, Gamma Knife treatment 6 months later, discovery of residual AVM at age 16 then I was treated with another Gamma Knife surgery, second brain bleed at age 24 and third Gamma Knife surgery at age 25. I’m still waiting for confirmation of obliteration. Unfortunately for young patients we seem to have a higher risk of regrowth during puberty, but we also have a high chance of recovery and the ability to heal… although I still have deficits, I graduated high school on the honour roll, and now I am married and am able to travel and enjoy life.
Wishing you all the best!
-Julia
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Hi,
I’m so sorry you’re having to face regrowth. Our sons are the same age and have both been through so much, so I can only imagine how discouraging and heavy this news must feel.
Luke’s situation is a little different—he had some residual AVM along with new growth that was found on a follow-up MRI after his resection. From there, they did another diagnostic angiogram and ultimately recommended stereotactic radiosurgery (SRS) to treat both the residual and the new AVM.
His radiosurgery experience itself was thankfully very smooth. The only noticeable side effect was a small area of hair loss, which has since grown back. Since treatment, his headaches have improved, he hasn’t had any more seizures (he’s still on Trileptal), and overall he’s doing really well. He’ll have another MRI in the next few months to monitor progress.
The radiation oncologist explained that SRS doesn’t guarantee complete obliteration—especially in kids, where the success rate is around 50%—and that it can take 2–3 years to see the full effect. We’re still in that waiting period ourselves, but we’ve come to understand that reoccurance after treatment isn’t uncommon with AVMs in pediatric patients.
Even with full trust in our care team in Cincinnati, hearing that the AVM was still there was incredibly discouraging at first. I just want you to know you’re not alone in this. If there’s anything I can do, please don’t hesitate to reach out. I’ll be keeping you and your family in my prayers.
Best Wishes,
Brandi
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Thanks all.
We met with the neurosurgeon today and they are recommending repeat craniotomy. I am also reaching out to Barrows and Boston for second opinions. Really was thinking the doctor would recommend radiation. Anecdotally, it seems like most pepole with recurrence get radiation instead of surgery again.
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My team has alternated approaches each time. Although I had the Gamma Knife surgery three times, they also tried artery embolization after the first Gamma Knife and venous embolization after the second GK.
Sorry to hear about your son & yes I have read & was told by my neuro that AVM’s are more likely to regrow in children than in adults as their brain is still developing.
When I had mine removed I was 30 & told there was a slight chance as I wasn’t a child but also wasn’t old, however AVM’s were not as common back then & feel the medical research has come a long way.
A few years ago during a routine MRI checkup it was suspected a regrowth had occurred & my neuro advised they would likely treat it with radiation second time around, however was lucky enough to discover there was no regrowth.
Please keep us posted & praying for your son & may he get this sorted out soon with no complications… God bless!
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Hi
My daughter was born with a AVM. She had a craniotomy at 4 months old. They told us it was resected. At 6 it came back (mind you we were going for annual MRIs) at that point in time they told us it was diffused and that it would be too complicated to treat.
They do eventually decide to treat as she had developed epilepsy and left side weakness.
We
Returned to barrows where the opted for gamma knife with the hope that they’d be able to shrink it. Unfortunately, her seizures worsened and she lost all functional use of her had. he speech had been effected as well as there being cognitive declines.
She’s. No longer a candidate for gk.
I’m not sure what we’ll do going forward.
She had an angio last week and the Dr in our country said embolization, but none of the drs in the US views that as an option so I’m not sure.
Long story short, regeneration unfortunately can and does happen especially in children
Just wanted to provide an update. After consulting with several doctors, my son is going to have a repeat craniotomy on June 15. If you could keep him in your thoughts and prayers, it would mean a lot to us. Thank you.
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Thanks for the update. I wish him all the best. 
-Julia
Prayers for your son. Hope the surgery was successful and his recovery goes well. 
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I just wanted to provide an update and thank you all for your support. The second craniotomy was done on Monday and my son came home this afternoon. So far so good 
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