Hi
I had my gamma knife surgery a year ago and suddenly out of nowhere I started experiencing stroke symptoms and was rushed to hospital. Loss of movement control in right arm, speech and language problems and blurred vision. They say it could be my brain reacting to the scar tissue. Has anyone else experienced similar and know of any treatment/ cure for this? I don’t know if it’ll keep happening
I think most people have changes from about 5 or 6 months post op and the risk of a bleed continues until something like a year or two or three post zap, so it takes longer for radiotherapy patients to get back into the safe zone.
@JD12 had a seizure some time post op – perhaps several years post op which was attributed to scar tissue, I think. I’m sure he’ll confirm.
You’re going through the same stuff that others have dealt with, if that helps: it’s not wholly unusual: but it is important to get any such events assessed by the hospital.
Very best wishes,
Richard
Hi! I had gamma knife back in 2016, and around the 6 month mark did have some brain swelling. It caused headaches but did not require steroids and was managed with over the counter meds. I was fortunate that it did not last long fro me. My AVM was confirmed obliterated in February 2019 via angio.
Fast forward to January 2023 and I had a grand mal seizure while at work, and have been on Keppra since. No recurrences since, knock on wood! My AVM was in the left temporal and the onset and type of seizure is similar to seizures with a temporal focal seizure. I have what they refer to as an artifact, or scar, that was likely a factor. With a second occurrence they would confirm it as such, and I would meet the criteria as epileptic. Although I will preface the fact there was permanent damage in the area as a result of the bleed.
I’m not sure if this helps, but as Richard states its always good to follow up medically.
Take Care,
John
My first Gamma Knife was in 2019 where I suffered brain swelling all of 2020 and took high doses of dexamethasone. About a year after that I started shaking everywhere. So I have an essential tremors or Parkinson’s. I don’t know yet. They haven’t told me. But my AVM came back on the PCA postier cerebral artery my neurosurgeon said it was way more dangerous so I had to repeat gamma knife in 2024 now I’m waiting till June of 2026 to see if it worked also I’m on Keppra because I fell or had a seizure. I don’t remember any details. I have short-term memory loss from the concussion, but I got three brain bleeds. I’ve since recovered from that thank God.
Hi, I had similar symptoms 2 years after my Stereotactic Radiotherapy to deal with my AVM. I had loss of control of my left hand, unable to talk and excruciating heart pain, then followed by a focal seizure. These symptoms/seizure lasted for up to 8/10 hours and only eased when I was rushed to hospital to be given medication to take me out of my ‘episode’. This has been on going since 2018 and have happened approximately 5 times each year. I have been on various medications (Keppra, Lamotrigine, Clonazepam, Nortriptyline amongst others). None of these medications have stopped my ‘Episodes’. In the last year, I was given an Emergency Medication (Midazolam) to be administered when ever an Episode begins and this has helped such that the Episode eases within half an hour. I have been told that it is likely as a result of scarring on my AVM (or lack of blood flow to my brain caused by other issues). You are the first person who has had similar symptoms as myself. Hopefully your issues resolve themselves within a short period of time rather the ongoing Episodes that I have.
Thanks everyone for reaching out. It really helps to know others have gone through similar. It’s so frustrating - I just want to be able to drive again. I’m seeing my consultant today, I’ll let you know what he says
Wow, that is extremely scary and I am sorry it happened to you. When I had my gamma knife, I took it well in the beginning. I had some rough headaches, they were ice picks and they were fairly scary to have, and some migraines. Unfortunately, a little over a year, I had a big seizure. After finally getting to the ER, they found I was experiencing swelling, and a lot of it, so they put me on dex to reduce it. That was also a long battle! Well, when that went away, I was still having the seizures, so off to see a neurologist for the first time and sure enough, I got diagnosed with epilepsy. I am still battling that sadly, but as your doctors were saying, the doctors treating me say it is because of all the changes from the gamma knife. The neurologist says because of all the scarring from the procedure. The neurosurgeon gave me some hope that its because space is created as the AVM shrank reacting to the gamma knife, and because it slowly filled now with liquid the brain was needing to get used to that change, so after some time the brain will hopefully become happy again and the seizures will stop. I can only hope that’s the case. Best of luck to you in your changes, I hope you never feel that again and that you continue to fight.
Kev.
Hi Maria Clare,
I have similar symptoms as you will see on my post below(Rafa).
As I indicated, Midazolam used as an Emergency Treatment has stopped the Episodes within half an hour. I now have Midazolam with me 24hours a day in case of another emergency event. My Episodes went on for many hours after being rushed to Hospital as an emergency in a ‘Blue’ light ambulance. Midazolam has changed my life as I now know that my Episode can be controlled. The tiredness after an Episode in now much reduced to a day or so compared to 4/6 weeks when I had a full blown Episode. I hopes this helps, in the you should request Midazolam as an Emergency treatment. Ritchie
Hi - I had my GK in May of 2024. I immediately had headaches, and still do. I have noticed another what appears to be a side effect for me is that I have a hard time finding words. Meaning - I know what I want to say, but cant find the word to say it. This seems to be happening more and more since the GK. I don’t know if that is related to the GK - it did start about 6 months after. Another side effect for me is Vitiligo. My hands are multicolored with white spots and my eye lashes turned all white. My doctors said there are no cure for any of these issues. As far as the headaches, they said we need to find the right medicine (that has not happened for me). I hope that you are getting better and that it is no longer happening.