About 2 years ago I started having bad headaches and migraines. I would have a migraine every day for a week at a time. My doctor didn’t think anything was wrong but I wanted a ct scan. I could feel that something was wrong. This year I started getting headaches every day. I didn’t even know what it felt like to not have a headache anymore.
My new doctor sent me for a ct scan where they found my avm. I then had an mri and angiogram.
My avm is 5-6cm and in the left parieto-occipital region. I don’t know all the medical terms but basically it’s in the parts of my brain 1) the vision part and 2) the motor sensory part.
So a few months ago I was at work and the whole right side of my body felt kinda weak and numb and tingly and I was just super out of it. I had no idea what was going on. And I remember I was sweating a lot. I had a few more of these episodes and my neurologist put me on an anti-seizure medication which has been a god send for me. I barely get headaches and migraines anymore and the sensory seizures have stopped.
Anyway, I was told that my avm is inoperable. My only option is gamma knife. The surgeon told me that if I don’t do the gamma knife then there’s an 80% chance that my avm will rupture at some point.
When I had the angiogram I read about it on here and I was told it was pretty easy. I had a TERRIBLE time. I rebled twice, I was in the hospital for 12 hours, the recovery process was a week, I had a migraine for 36 straight hours and I literally thought I was going to die.
So now I have to choose to either not treat my avm and risk rupture, or gamma knife.
I’m so scared of the side effects of gamma knife. I had kidney stones a few years ago and I had to get them surgically removed and there was complications both times. My sister joked that it’s typical of me. But it’s true. I’ve read a lot about gamma knife and it really is my only option, but I’m terrified that I’ll get the brain swelling or necrosis or worse headaches or seizures after. They said I might need to do the GK 2 or 3 times.
What are your thoughts? Have you done GK and had a good or bad experience? I haven’t given the clinic my final answer yet cause I just need to take some time, but I definitely feel forced in to it.
Sorry, this ended up being really long.
Thank you in advance for reading my post and any thoughts or opinions you can share with me <3
Hi and welcome. Sounds like you’ve had a tough go of it for sure. I had gamma knife just over two years ago, however my AVM is small. I do know the larger the size the more likely there will be side effects. But you will see with brain things nothing is 100 % and there always seems to be multiple factors to consider. I hope here you will get several personal experiences to help you deicide. After my bleed the recommendation was gamma although if needed surgery could be done but held significantly higher risks given location. I don’t believe I have any side effects from the gamma knife. For me I was lucky to have a couple options, I did not want to experience a second bleed.
Take care and I imagine other gamma knife folks will jump in. John.
i think you should go for it… still its better than a stroke/ bleeding coz that might cost you permanent disability or death or some other thing… or if you can go for other dector opinion … some doctors really scares you… when i found 2.5yrs ago doctor said go to that hospital immidiately this thing need to be out of your mind and bla bla then i went to second he said i dont need to worry and few more who said i have options like gamma knife and embolization and now the doctor i am seeing he said no operation unless my side effects increases coz maybe sometimes it cause more damage than good… maybe that helps or confuses…
Hi Karan, I have the best neurosurgeon in my city apparently but the gamma knife clinic is pretty new here. I believe it’s been open for almost a year now. I also have a neurologist and the gamma knife team that have all told me this is my only option. I’ll obviously have to do it, I just feel like I want to procrastinate LOL only so long I can put it off for though. Thanks for your reply <3
Hi There, my son has a 5cm AVM in his left occipital lobe and we were faced with the same decision as you. His was also inoperable given its location relative to the visual cortex and the high potential for blindness. After a lot of doctor visits across 3 different hospitals we made the choice to treat with GK and have not looked back since. In his case (due to the size) they needed to treat with 2 doses about 3 months apart. Each dose was a single day in the hospital and there was almost no pain or side effects. He had headaches about 2-3 months after the treatments but those have now subsided and we are now in the 3 year waiting period while the radiation does its work. Due to the large size of the AVM there is still a reasonable chance that the GK treatment will not obliterate 100% of the AVM, however, we will deal with that if/when the time comes and there is a chance that the AVM is a fraction of the original size and may now enable a surgical resection. For us the alternative of doing nothing was an almost certain bleed at some point in his life which we felt was not the right path. Based on where we are at I would highly recommend doing the treatment! Good luck!
Thank you so much! I can’t tell you how much that helped me.
I will definitely be going ahead with the gamma knife and I’m happy to hear that your son is doing well.
Thank you again
Hello
I have an avm size of 6cm in my right occipitol lobe.
When i went for a CT before my nose surgery luckily my radiologist found the AVM in my brain and informed to my ENT surgeon. She immediately called me and called off the nose surgery and advise me to deal with the AVM. By god’s grace Until that time i never had any complications related to AVM. We have consulted with few neurosurgeons and received different treatment options. But finally we have decided to go with gama knife. I had my gama knife treatment in March 2018 and i never had any side effects because of the treatment. As precautionary the doctors discuss the side effects with you prior to the treatment but its very less likely to go through them.Stay strong and go for treatment before it gets worse.
Hello I also have an inoperable AVM in my brain ,I had a seizure thats how it was diagnosed The only option was Gamma Knife. I had 2 sessions because of its size, didn’t have after effects other than minor head aches not really bad ones. Three years have passed it has reduced in size as per my doctor.Think about it and take a good decision its very much better than a rupture. Wishing you all very best
