Is there anyone that has had the gamma knife? Did you have any sid effects? Im leaning more toward surgery in stead just not sure which to choose could anyone help
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Hi @Lisajane . Wow read your introduction that mentions your situation “ the main actuary that runs from my heart to my brain.”. My son had a seizure in July 2023. Almost a year ago. Since then he got embolization, failed Craniotomy (January 2024) and Gamma Knife (March 2024). The failed Craniotomy was because during surgery the neurosurgeon decided to not continue as the Motor Cortex was closer than what fMRI was reported . The procedure of Embolization really helped him thou. Then the Gamma Knife went well as he has had no headaches and the inflammation possibly never occurred. I would recommend that whoever touches your brain either through surgery or Gamma Knife that you make sure are experts with years and years of experience. Gamma Knife that my son received was the Elektra Icon which was the latest technology but the new one is Elektra Esprit . Radio surgery doctor was an expert too. Good luck on your journey !
Thank you so much for your reply it’s a tough decision but il makesure I get lots of advice hope your son is doin well half of me want it to be over so the surgery would do that and the other half is scared of having major surgery
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Hey, @Lisajane
These are the most difficult decisions we have to make.
I assume your doctor has explained the risks for either approach: either open surgery or gamma knife radiation? Neither is risk-free and people do often have side effects from radiotherapy. So far as I can tell, the side effects are most often treatable but a definite complication.
Has your doctor indicated any preference for which approach she or he might take or does it appear to be a simple one of your own preference?
Best wishes,
Richard
Thank you for asking about my son. He’s doing well and started the wait time that Gamma Knife dictates. Usually 3-4 years. We all in the AVM survivors forum want this nightmare over with … some have and some of us are in the race. We are all here for you!
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I had Gamma Knife in November of 2016, this was after a bleed in May of 2016, and then the determination on course of action. My Neuro recommended Gamma as the location on the inner side of the left temporal presented challenges to access. I had some swelling around 6 months and a period of ice pick headaches, I did not need anything more than over the counter and that was only a few times. In February of 2019 my AVM was conformed as obliterated. For me it proved to be the right course of action, although it did take a couple years to finalize that! The plan was if a second bleed the option would be craniotomy. Collect all the info you can and be at peace with your decision. For me it was the right decision, had I experienced another bleed that would certainly be in question! Take Care, John.
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My surgeon has swayed more towards the craniotomy only because its cause me bad anxiety and the wait and time it would take for the gamma knife to work my avm is on the surface of my brain just in-between both lobes the part that controls my right leg it’s all just a little terrifying and want to make the right decision as iv got a young child at home to thanks everyone for your reply it makes me feel less alone
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It’s great to have you on board. I was “lucky”, I guess, that my doc only offered me one option, so that was the one I took. It has been wholly successful, so everything is good (I had an embolization, so different again!)
With regard to craniotomy, we definitely have a whole bunch of people here who have had a craniotomy and it be perfectly successful. If your AVM is very much on the surface, then there’s less risk of doing damage during the operation than if parts of your AVM are deeper into the brain. I don’t want to lure you one way or the other but I’d say we have just as many successful craniotomy patients here as other modes of treatment in the brain.
… in case this helps!
Richard
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Thank u richard this has certainly helped i wasnt offered embolism as my avm is to high up and would be difficult to reach so it was gamma knife or craniotomy i think im defo leaning toward that i just want to get it done and hopefully be here for my daughter after. Thank u for your reply
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I was 64 when my AVM was discovered. Since I had lived with it for 64 years, the doctors decided to just monitor it. In the next three years I had two more seizures and finally a brain bleed and a stroke. Given the risk/reward equation at my age, my doctors recommended radiation treatment. Had I been twenty years younger, they would have preferred to operate and remove it.
I have not had any side effects from the radiation treatment but have limitations on the amount of weight I can lift as a result of the stroke.
After three years the AVM has been reduced by a little more than 50% but it is not gone and probably won’t be in the next year. At that time they will consider embolism or a second round of radiation treatment.
If I knew then what I know now, I think I would have had surgery 6 years ago. I only have so many 4 year recovery plans left to go.
Good luck with your decision.
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I had gamma knife in 2019, I then had brain swelling all of 2020, lost almost all my vision, avm/aneurism were in my occipital lobe. I still would pick gamma over getting cut in my brain. My dad died at age 47 of an inoperable brain tumor and I saw all the suffering he went through. He was sick in the 80’s. Good luck in your choice!
Hey @Lisajane hope you are okay!
I have Gamma Knife in 2017… i didn’t feel any pain at the procedure or after! Only discomfort i have the frame.
Tomas.
Yes I have made the decision of surgery I don’t want to have the radiation and then couple of year down the line find out it hasn’t worked has anyone had the surgery? And how was recovery?
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That is a whole new question. I’d suggest posting it separately. You should get a lot of feedback.
@Lisajane best of wishes and prayers for you. I think if you read all the experiences of all that have gone through Craniotomy in this forum its been a different recovery as per how long it took to get back to normal life, pain and others. I think one said that he was back in the gym in two weeks, which sounds crazy but true. Others took longer. Gamma knife as well some obliteration … some didn’t. Keep us updated.
Lots of people have had a craniotomy as their intervention. It does appear to be a very successful mode of removal, and in the US seems to be the most common mode. Obviously it has risks associated with it: I always look upon a craniotomy as a major assault on the body: but a lot of people get through perfectly well.
I’ll adjust the title of this thread so that those who’ve had a craniotomy may feel like it’s something to read and reply to.
Do let us know any questions and don’t forget to tell us when you’re going in. We can cheer you from the sidelines!
Very best wishes,
Richard