I had a brain haemorrhage 20 years ago which was too deep to fix surgically. And had gamma knife treatment which sealed 2 years later. After this I had occasional partial nocturnal seizures.
These stopped after a couple of years and have been seizure free for 15 years.
I have recently had 3 full blown seizures and had blood in my ear. I am wondering if people have had a avm regrow or a new one form? I am phoning the doctors tomorrow for an appointment and assume I’ll be referred but just wanted some experience if anyone has had this happen so long after the initial bleed /treatment.
So sorry to hear of the seizures, certainly frustrating and definitely requires follow up. My AVM was left temporal, and I had GK in 2016 following a bleed. It was confirmed obliterated in 2019. I had a full grand mal seizure in January of 2023, and have been on Keppra ever since. I did not have any seizures of any sort until that one. So while not as long as you, still was close to 7 years post GK, and 4 post confirmation.
There is rare cases I am aware of where the AVM grows back, but does seem to be often in children when in the brain. The extremity AVM’s are quite different. The blood in the ear certainly is cause for follow up. Stay in touch with us for sure, and I imagine others from our community will add their thoughts and experience. Take Care, John.
Hi there. So sorry to hear what you are going through. My understanding is that when an AVM is treated it has to be completely gone to be obliterated. If there are any feeders etc left the darned thing can regrow itself by recruiting new tissue.