My daughter is 3 weeks from getting Gama knife for a grade 1 brain AVM in NYC.
Anyone have any stories to tell, hopefully encouraging, about what to expect post surgery?
Worries about future issues, side affects, ARE, and so on.
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I had Gamma in 2016, although I was 48. I think the “halo” will be something she may struggle with a little. It is tender but to know once the procedure is done immediate relief. Really the only side effect I had was some minor swelling around the 6 month mark and some ice pick head aches. They went away, but to know this is a possibility and be prepared sure helped. Other than that it was really a relaxing day with incredibly caring and kind medical team. I was able to listen to a cd during the actual GK, and I’m assuming she will be able to. Bring good music!
Knowing that I was a good candidate for GK, having a great medical team helped and I was able to control my perspective which really helped. Once done I knew I was on the road to obliteration!
John
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Thank you , that is very helpful.
Hi there,
My 14 year old son had Stereotactic Radiosurgery, similar to GK in Dublin October 2024. Same grade AVM as your daughter also.
The treatment was pain free and took 20 minutes. The frame was a bit tight and he got a bit uncomfortable towards the end but got through it like a trooper!
The team in St Lukes Beaumont are amazing!
hHe had no side effects immediately after. We went shopping and went for dinner after. Doctors told him take the week off school post treatment. He rested for the week. He was tired but felt fine.
7 weeks post treatment he had some side effects- vertigo, feeling sick, legs felt like jelly and vomited a couple of times. All due to the vertigo I think. He had a sensation in his head but no headache. We brought him to ED as symptoms were similar to his bleed but they checked him out and felt it was all side effects from the treatment. He was prescribed steroids for a couple of weeks which helped the symptoms. He has been fine since with no symptoms thankfully.
I hope your daughter is doing well. Wishing her all the best with her treatment.
Mary
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Thank you Mary, 14, that is a very brave child.
So appreciate you sharing with me.
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My daughter (age 16) received GK at ucsf in August 2014 and angio confirmed complete obliterated 5 yrs later. Grade 1 AVM. No side effects. Stay positive, trust the team and best of luck to your family!!
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Thank you for this inspiration. It is incredibly helpful..
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I want to just say how helpful this has been to keep our spirits up.
My daughter had the Gama knife today, and it seems to have gone ok.
The experience thus far. got there at 6:30 am. They put the head brace on, and that stayed on for 6 hours. It took about 2.5 hours for the angiogram and mri’s to complete. Then the Dr’s reviewed it for a short time. By noon she was in the Gama and out by 12:40pm. Very tired now, headache, probably from the head brace. It was a long day, but happy it is behind us.
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John, now that the procedure is over, we use your saying, “on the road to obliteration” Although we seem to have changed it to one day closer to obliteration.
I wonder where you had your procedure done, I have to say it was anything but a relaxing day :). and certainly no music. The hallo was on for 6 hours which included moving from one building to get the angio and mri and then back to the gama building to get the treatment. While it was a somewhat difficult emotional day, it seems to have gone ok. Only side effects are numbness on the head. fingers crossed. Again, thanks for the encouragement.
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I had mine done in Winnipeg, Manitoba. I was fortunate all was close and my furthest travel was about a three minutes down a hallway. My halo was about 5 hours and was sure nice to have removed. Too bad on the music which is strange. They just popped the earphones in and I listened to Bryan Adams.
The best thing to think, it is in the rearview mirror!
Take Care,
John
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Thanks friend, you have been an inspiration. Thumbs up on Bryan Adams, good choice for chilling out!
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So, posting this for others. It has been 10 days since the procedure. While the day was difficult (mostly emotionally) we are all glad it is behind us. Only side affects so far are - day 1 and 2 headache and tiredness and numbness on head, day 3-4 less tired, still numb, no headache, after that, back to normal with some soreness on top of head, and still some numbness. We know that complications are more likely in the months ahead, but we are optimistic, and again, we are so happy to have this behind us.
There were also feelings afterward thinking, did we do the right thing? did we go to the right hospital? These doubts and fears are starting to subside. But I guess it is just to say, be sure of your decision prior to acting. Try to cover all the bases.
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Nice ti have it in the rearview mirror! I have often said we don’t know if the decision was the right one until sometime after the fact. Being at peace with the decision of the moment is what we can control. Take care, John
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I don’t think you can ask these questions. I’m sure it is natural to worry, especially as a parent, as one who is tasked with answering questions on behalf of another, but I don’t think you should trouble yourself with these questions. We are required to make life-or-death decisions as laypeople with very little information to go by and sometimes conflicting advice: it’s an impossible task.
It’s going to be a long journey but it is started and you made the best decision you can based on the information you were given, the same as the rest of us.
Very best wishes to all of you!
Richard
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