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 had Gamma Knife for a right occipital AVM in 1997 at Mayo in Rochester.AVM was discovered after seizure and aneurism bleed,had another aneurism embolized before gamma.Was one of first 100-200 patients to undergo Gamma Knife in the U.S. at that time.Gamma was successful but took almost 5 years before for AV was deemed gone,surgery was also not an option for me due to location (Rigjt Occipital and entwined in vision cortex).A few side effects including a whooshing noise in my head,unpredictable onset of headaches and the worst being over 50% loss of peripheral vision in both eyes also very lethargic for months.If I remember right the chance of seizures does diminish some but not substantially.Wishing you the best outcomes possible hang in there.
Hi could I ask you what your symptoms were before you found out about the occipital avm I am almost sure I have one there I have had these awful headaches in the back of my head for years it almost feels like someone has hit me in the back of my head with a sludge hammer.
I had plenty of symptoms all of which i pretty much ignored.Frequent debilitating headaches behind right eye,other times I would get a painful indigestion in upper chest always followed by dizziness and short 2-3 min blackouts that if I were not close to something to grab onto I was going down,trouble coming up with words to finish a sentence or conversation I might be having,drawing blanks of names of long time friends,pulsing pressure behind right eye and whooshing noises in my head.Finally during an especially stressful loss of family member due to car accident on Christmas Eve,after returning home from staying with my brother for a couple days,(it was my sister in-law that had been killed.It was then that I had an aneurysm bleed and seizure.Wife and I had just gone to bed,my right I was blurry and pulsing I remember feeling a warm heat in my head and then blackness I couldn’t see,speak,or move for 6-8 min.Luckily wife had been talking to me as it happened she called 911 and minutes after I come around with a headache so bad I wanted to knock myself out that the EMT’s arrived.Once when I was 6 I told my parents I couldn’t walk out to get on the bus (we lived in the country) anyways they thought I was trying to get out of school,my dad carried me out put me on the bus when finally getting to school I got up like nothing had been wrong.That year I got held back in school (couldn’t read)and my explanation of everything was backwards and jumbled went unheard.Have heard it’s a symptom.
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