Chloe,
Can I introduce you and John here? I’m suddenly very conscious that we have diverted @msngpcs thread about daring to do an angiogram.
Best wishes,
Richard
Thanks Richard! I’m a little off the grid for a week or so but do currently have a wi-fi connection, but no cell coverage.
Chloe, we met briefly on the angiogram thread. I had gamma knife back in November of 2016 and was confirmed obliterated in February 2019. It was the option that created the least risk of side effects. I was not an embolization candidate so it cam down to gamma knife or craniotomy. My AVM was on the inside portion of my left temporal lobe, so difficult for surgery.
The most difficult part of gamma was the wait, but the impatience subsided. A little discomfort from the frame, but the day was overall fairly relaxing. I was home in the early afternoon. So me I have no side effects from gamma, any I do have are as a result of the bleed. Based on the discussions with my surgeon, this was a fairly clear choice for me. Any question, feel free to ask and will gladly pass along my experiences. Take Care, John
Thank you I appreciate it so much . I have 2 small veins left me embolization cured 98 percent of my avm I’m very lucky and I have never had a bleed .
I have heard so many bad things about gamma about brain swelling and headaches.
Chloe,
It’s a difficult choice to do this stuff and I don’t want to urge you one way or the other because none of us know how anything will play out, so it HAS to be your own considerations but I think of these things like this…
Nothing in life is without risk.
You’ve had the embolisations – they carry risk. You’ve had an angiogram or two I guess – they carry risk. And the risks are similar or possibly greater impact from those than from the gamma knife: i.e. when I went in for my first combined angiogram and embolisation, the doc gave me something like a 5% chance of “something bad happening” and his list of bad things included “stroke or death” 
I mean, that’s as serious as it gets, isn’t it? Yet these are the risks associated with the activities you’ve already done. And 5% chance means one patient in twenty. I think that’s quite high.
When our son was expected, we had a test for Downs syndrome and the doctor looked at the results and said “1 in 500” and we were like “oh, that’s ok!!” but statistically 1 in 500 at birth is quite high, so the doctor was quite cautious: “that’s quite a high chance” based on the test that we had done. Anyway he came out fine and doesn’t have Downs and is cleverer and more hard-working than either of his parents, so it turned out well.
So maybe think about it in terms of the things you’ve done before and the fact that you cheated those odds. Maybe that will help.
We definitely do have some ladies… I’m thinking of Melissa J L and Alyssa C who definitely had a run around with necrosis or oedema post zap – and it doesn’t seem uncommon, though I’ve not seen the ratio. I can invite the ladies in here if you need a chat with them. Or, create your own post publicly and we can lure them into the conversation. I do a bit of luring occasionally. They can probably tell you about the quite bad end of the scale if you really want to know. I think Alyssa got clear of her trouble in the last few years and I don’t remember how Melissa is but she has had quite the “journey”, though I think she’s had a LOT of zapping and I assume you’re in for a relatively small amount from your description.
If your name was Clarissa or Vanessa I’d definitely avoid it, in case there’s something in names ending -ssa that we need to take into account!
We can find you some help if you need it.
Hope you’re doing well,
Richard
Thank you so much and yes I would love to chat with these woman. I have panic and anxiety issues and this has just added to them 200 percent lol.
I don’t work out like I used too because I’m always in fear of this avm it had changed my life and I just can’t seem to not think of it everyday.
But honestly I just had my embolization done in May and my last angiogram in August so I’m really new at this too. I was doing so great before all this and this just rocked my whole world. Sorry to ramble on .
But yes I would love to speak with people who have had gamma knife
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I had some swelling about 6 months after GK, but it was mild and I did not need steroids. I had some sharp pains, described as ice pick headaches that came suddenly and disappeared quickly. The discomfort due to the swelling was for a few weeks. The headaches frightened me when they first started, it would happen a few times a day and then faded and its been years since I had one. I guess it was a month or two when these things would show up from time to time.
Overall my experience was good. I would do it again, however that is very easy to say with positive results! John.
I’ve invited the ladies here. It will be up to them if they have time and/or want to share their experience with you.
I have had radiation and embolization each 3 different times. Mine was 5.4 cm I think. The first 2 radiation treatments were done 6 months apart. After the second one I had a seizure a week later. Probably had some swelling. They put me on a round of steroids after that. Followup 2 years down the road and the AVM had recruited 2 new feeders. Seems they missed a part. That’s where the 3rd radiation treatment and embolization comes in. Two years later and my AVM is still there. Just doesn’t seem to want to go away. But on the bright side it is much smaller. I haven’t had a bleed. Mine was discovered after I had a seizure at work.
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Oh I forgot to mention that I can’t have anymore treatment other than to just have it removed. My neurosurgeon told me that if it tried to recruit anymore feeders I will have to have surgery.
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That’s what scares me my avm was 98 percent gone with embolization. I have two small veins left and that’s what they want to do radiation on. I’m still on the fence about it especially now with the lack of drs and nurses available.
···
Sent from my iPhone
On Dec 8, 2021, at 2:00 PM, Melissa_Joyce via AVM Survivors Network ben_avm_community@discoursemail.com wrote:
| Melissa_Joyce
December 8 |
- | - |
I have had radiation and embolization each 3 different times. Mine was 5.4 cm I think. The first 2 radiation treatments were done 6 months apart. After the second one I had a seizure a week later. Probably had some swelling. They put me on a round of steroids after that. Followup 2 years down the road and the AVM had recruited 2 new feeders. Seems they missed a part. That’s where the 3rd radiation treatment and embolization comes in. Two years later and my AVM is still there. Just doesn’t seem to want to go away. But on the bright side it is much smaller. I haven’t had a bleed. Mine was discovered after I had a seizure at work.
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Ok so the big day this Thursday March 23 I’m
Going in for I hope my final angiogram to I hope
See
That my avm embolization has worked and I’m cured.
Wish me luck everyone im scared but excited to I hope be done with all of this.
Il keep you updated .
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You know we’re with you, don’t you? Whether it’s exactly what you want or exactly what you don’t want?
Good luck!
Well I hope it’s what I want lol . They think everything will be great because I had gamma knife too . But thank you 
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