21 y/o AVM patient/ gamma knife help?

Hello, I am new to this support group. I am 21 years old and at the end of January, I had a incident where my feet went paralyzed and eyesight went blotchy. I threw up bile for days thinking I had food poisoning until I became incoherent and had to be rushed to the ER. On 2/4/2022 I was told by the doctors had a intraventricular hemorrhage (brain bleed) due to a Ruptured right parietal AVM, it is 1cm & I was emboli-zed thru my groin area. I am due for radiation therapy aka the Gamma Knife on 3/31/2022, I am quite nervous and was wondering what was the outcome for you all? Any common side affects I should be concerned about ?

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@Jaylahh

Welcome to AVMsurvivors! I’m sorry you’ve had a rupture but it sounds like you’re in good hands.

I’m not especially familiar with gamma knife because I just needed an embolisation but I’ve read a fair bit on here about it. It seems to me likely that you’ll get no effects from the radiotherapy for about six months, then people do start to report some things like headaches and other effects which are usually to do with the radiotherapy doing it’s thing. As a day treatment, it seems uninvasive: the frame that you have to wear to guide the zapping all into the right place is quite uncomfortable but it is only for a short time.

My mum suffers with chicken pox every time it comes round, so as a kid, she avoided passing it on to myself or my sister. Consequently, I got chicken pox as an adult, which led on to me justifying to myself that it was only two days of being itchy and as an adult, I should be able to reason my way through it. I did ok. I’ll admit I found it necessary to rub some of the spots.

So I think going through gamma knife is the same: it doesn’t take very long and hopefully you can argue with yourself to deal with the discomfort of the frame for the short time it is needed (I assume an hour or so – not a couple of days!!)

However, we do have a bunch of people who’ve undergone gamma knife. I’m sure they’ll share their experience and help you through.

Welcome!

Richard

Ho Jaylahh, and welcome. I had a brain bleed at 48 years old and discovered that I had an AVM in my left Temporal Lobe. I was a while recovering from the bleed and determined that Gamma Knife was the best option for me, while surgery was a possibility should I have a re-bleed. My AVM was ion the inside of the lobe so more difficult to access for surgery with a much higher risk of complications.

My Gamma knife day went really smoothly, the frame was uncomfortable but tolerable. I then had a CT scan and MRI. I did not need angio, but had two previous so there was not a need to do one the day of. Then the gamma knife took I believe 40 odd minutes, I listened to music and was really quite peaceful. As soon as the treatment was done, off came the frame,

I had some swellling at about the 6 month mark, and head aches but slowly subsided over a month or two. I did not need any medications, where some folks do around this time mos often. I wnet back at one year and twp years for MRI and then an angio at 28 months and received the word that it had been obliterated.

There are quite a few of us here who have had gamma, so I imagine some will join in. Your AVM is quite small, as was mine, and that is favorable for gamma knife as well.

Take Care,

John

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I had an AVM in my left occipital lobe treated by gamma knife. The week of taking steroids to prevent brain swelling was the worst part. The AVM was gone in a year. It is understandably makes on nervous. Try to relax, and get through it. It will work out. Best wishes.

Similar thing happened to me
Good places to seek for 2nd opinion

Barrow
UCLA
USC
Mayo
John Hopkins

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Welcome to the family first of all and sorry to hear about your experience… As you could imagine everyone is different, however you will read here many have had great success stories with all sorts of treatment… I can only advise you to stay strong and positive and feel free to ask as many questions you may have here to help with your journey… on that note being here to tell your story after a bleed is already a sign you’re on the path to recovery… God bless!

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I had gamma knife back in sept 2021, first month I had a few auras without migraines . I suffered frequent headaches weekly since my AVM was found in march 2021. Since gamma knife I haven’t had many headaches but in the last month have had dizzyness and lightheadedness. I’ll know more in 2 weeks from my MRI followup if it’s shrunk.

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Hi I am sorry you are going through this especially at 21 years old. I am 60 I run, spin, swim and lift weights all of my life and never knew I had an AVM until 2 days after my 60th bday. I had a crushing headache which lead to a MRI and then an angiogram. I didn’t have a bleed but it was 1 Cm. I chose gamma knife. It was frightening but 0 pain,
No needles. The fitting for the cap was uncomfortable, it’s the cap that you wear during radiation. It covers your entire face. I asked for a mild pill to keep me calm thet I took the day of the procedure, listened to Beyoncé and done. It’s been 3 mos and no real side effects every once and a while I have a very mild headache that last for 5 or 10 minutes I am back to activities but try not to workout to hard. I really hope that I helped to ease your fears. Praying for your recovery.

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So what procedure you had?

I had gamma knife/radiation

Hi I had a small 1cm AVM no brain bleed and had gamma knife. I go back for my 6 mos visit in May. Do most people have brain swelling at 6 mos ?Thank you.

I don’t think most do but it is not uncommon. Generally form what I have seen this is when it will show up, if it happens. Mine was an annoyance but didn’t require medication and didn’t go on for long. John.

Thank you. I have a very mild headache everyone once in awhile, as I approach 6 mos I am starting to worry again. It has taken a lot of work to try to live and enjoy my life and I am doing it. However, I don’t sleep very well and the thought of steroids is the last thing I need.

Thank you so much for your insight !

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You guys have helped alot with your answers! I’m currently at Piedmont Atlanta now getting my MRA and blood work done.

My Gamma Knife surgery is this upcoming Thursday (3/31/2022) !
I asked about the brain swelling and upon request I will be receiving the proper medication to try and prevent that as much as possible

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We look forward to hearing how it goes! The people in my gamma team were the best! They were so dedicated and very clearly loved what they were doing, and for the right reasons. It made it all smooth. To be in such a specialty, you have to be committed to it. That is good for us! Take Care, John.

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I just posted a new post about it, I had it done today!