Hi Everyone,
I was diagnosed with a Left Occipital AVM in January this year, this was as a result of an MRI after a single seizure in November. I had never experienced a seizure before and this all came out of the blue and has frankly terrified me. I have been prescribed 100mg Lamotrigine twice a day to try to control the seizures - unfortunately I had a second one last weekend.
I had my angiogram last Friday (14th March) at St George’s in Tooting, and am waiting for the MDT to meet to discuss but the feedback so far has been that Gamma Knife is the likely treatment due to the location of the AVM (near the vision centre so surgery could damage my vision).
I would love to hear from others who have been through this experience. Questions I have would be:
Did you experience any side effects from Gamma Knife?
Was Gamma Knife treatment successful? If so, how long did it take to work?
Does the risk of hemorrhage and seizure diminish gradually after Gamma Knife or is it still the same until the AVM is 100% obliterated (if it can be)
Hey. Im very similar AVM in the left occipital lobe diagnosed after a bleed.
I had Linac SRS (vs your gamma knife) but my experience has been great. Treatment was painless, felt nothing and was done in less than an hour from arriving to being in the car home.
I had zero side effects, some weird feelings but nothing more. No vision effects either, im now 1 year post treatment.
I did have another bleed (about 9 months after treatment) but not as bad as previous bleeds and again no side effects. I belive my scans during the last bleed showed some changes but ive my 1 year MRI in a months time to check on progress. No seizures on my side.
Hello and welcome. My AVM was left temporal and I found out about it when at 48 years old it decided to show itself by bleeding. After a hospital stay I had Gamma Knife 6 months later. I had a couple effects around 6 months with some swelling and ice pick headaches that slowly disappeared. 27 months after the treatment it was confirmed to be obliterated. That was in February if 2019. I had minimal side effects but did have my first and only seizure to date in January of 2023. I do have a little space where it was referred to as an artifact but that was due to the blood clotting during the bleed. Some refer to it as a void, but I prefer to have an artifact in my brain vs. a void!
I believe the risk does decrease as the vessels start to close up. Overall my experience was really good with some of the kindest most caring people I have met in the medical world. Take Care, John
Thank you so much for your message. It’s heartening to hear that your AVM was obliterated, I’m very happy for you I agree I’ve had wonderful care so far and believe I’ll be heading to Sheffield for the Gamma Knife treatment.
It seems funny that the seizure presented itself after the AVM had been obliterated? Do you know what triggered it?
Not certain, so I am on Keppra as a precaution. You can see on the scans where the AVM was, although it doesn’t exist. Post bleed scans did show the area clearly where the bleed was. They artifact is the visible area. They won’t attribute it to that 100 % so not certain. John
I’ve also been diagnosed with an AVM on my left occipital lobe and recently had an angiogram too. My doctors have also recommended gamma knife treatment for me too!
If you ever want to have a chat as we are in similar situation drop me a message.
Hi!
Yeah i am from the UK, I had a seizure in sept 2024 just a few days into freshers week after i moved 2 hours away from home for uni. luckily i was with my boyfriend so he was able to call an ambulance and i was taken into a&e where had some scans which led to the discovery.
I’m now on levetiracetam to control my seizures and i haven’t had one since, sorry to hear you had another one.
Did you have symptoms before your seizures? and do you have day to day symptoms from your AVM?
Are you also from the UK?
I agree I’ve had wonderful care so far and believe I’ll be heading to Sheffield for the Gamma Knife treatment.
and that you have no more bleeds