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AVM Survivors Network

Questions for AVM Radiation Survivor, medium size AVM, and cerebellum area

#1

What were your side effects? What were your restrictions (activities, diet, smoking, drinking, etc)? How often were the treatment of radiation needed? How many years did it take for the entire completion? Would you have chosen surgery base off your experiences?

#2

Hi Precious,
I did choose Gamma Knife surgery ( gamma radiation).
Let me first start off by saying every case is different. This has to be a personal decision you make with your family. With that being said here is my story. Sorry to be so wordy.
I had the GK after I already had a bleed due to my AVM which I did not know I had.
The bleed was on my left side of the brain in my cerebellum. This caused a SCH stroke. I was given 3 treatment options.

  1. Brain surgery
  2. Gamma Knife
  3. Do nothing and take my chances on it not bleeding again.
    I had already had an angioplasty the day after the bleed to close off the main feeder. In my case there were too many other feeders to do angio’ s on them all.
    I choose GK. as my husband always says “we don’t know the road not traveled” so I don’t know if one of the others would have been better or worse.
    I was fortunate that my GK worked in 2 years. My AVM is gone. With that said I have been left with head pain since then. I am the 5% that had an issue. I tried just about everything to relive the pain. I am scheduled to have an MRI on my neck to see if this is where my head pain is coming from.
    If you have the treatment the head frame is attached to a machine that delivers the radiation. Make sure you have support under your neck. I am not sure that is what is causing my head pain but that is what we are checking. To see if any nerve or disc could be the reason for my head pain. It gets worse when I bend my head down for a long period of time.
    With all that I can still do everything I did before. I’m not as fast and I manage my day a little more. But like my husband says “there’s nothing I can’t do that I did before.” We just manage how much due to my fatigue but remember I had brain bleed.
    The GK did what it was suppose to and it did it in two years for me. I am grateful for that. I wish you all the best and please keep in touch. Prayers and hugs to you!
    Niyani
#3

Precious,

I too chose the Gamma Knife over surgery. I was lucky enough to have found out I had an AVM before it ruptured or I had a bleed. It was during an MRI for my migraines that it was found. It was NOT he cause of them. Anyway, August 21 it will be 1 year and the only thing that I can tell that has been truly affected by it is my vision. I believe that has to do with the location of my AVM (behind my right ear). I have had 2 MRI's sense and there is debris but the AVM, it has been OBLITERATED. My new favorite word. They say it can take up to 3 years for your body to absorb the debris from it. So every 6 months I have an MRI to check on the status of absorption.

The GK is the only way to go in my opinion. It is all scary. Very scary. Have family close and hold them tight. The Gamma Knife is the lesser of all the evils. I think.

May God keep his hand on you through this journey. You are Precious

Tootz's McGee.

#4

Hi Precious,
I had gamma knife radiation October of last year. Fortunately, my decision was made easy since my neurosurgeon advised embolization and surgery were not an option since the risk of stroke was way too high. I was ok with the gamma knife option though. However, this dicision is purely yours and yours alone. There will be risks and rewards to any kind of surgery and any kind of procedure dealing with the brain I’m sure will be no walk in the park. My neurosurgeon told me that it takes 3 years to see the full effects of the radiation, I will have an MRI in 1 years time and if he doesn’t see the improvement that he wants to see by then (shrinking of any kind) then I will have to do another dose of the gamma knife. I fully trust my team, and that’s what you need- to find a team that does a hundred of these a day, in whatever choice you make… I haven’t really had any side effects at all and the docs will go over any possible ones in detail with you. As for drinking, that’s something you should ask them, they may decide to put you on medication that would interfere with alcohol… I’m also surprised your neuro hasn’t told you yet to stop smoking. I hate to be a lecturer, because I was one, up until the day of my AVM rupture. At my follow up 2 months after being released from ICU my neurosurgeon had one restriction for me- no more smoking, he even told me I could have a couple glasses of wine as long as I wasn’t on the anti-seizure meds… I haven’t had one since the night of the bleed… We all know smoking is bad, but anyone with a vascular issue certainly shouldn’t smoke, I learned that the hard way. Did it cause the bleed to occur? I don’t know, but it definitely didn’t help. Also, there is a group for radio surgery that you may want to check out! Read some other questions and answers from other survivors to get a better feel for it… Good luck to you and keep us posted!!
Jeannine

#5

Hi Precious,
I hope your day is going well. My AVM ruptured in December of 2004. It was in a place the doctors said was inoperable. My options were:
1. Glue it, although with my angiogram the doctor said if we make one little mistake you may be paralyzed for the rest of your life.
2. Gamma knife.
3. Sir and wait and see what happens.
I wasn't comfortable with options 1 and 3 so choose # 2. They said this will shrink it, kill it, CV and it will disappear in a year. Cool beans. Went on for the surgery, took all day, but wasn't bad. Came out just fine. Went back 1 year later, nothing had changed. Doctor said that's OK, sometimes takes a couple of years to happen. Went back for 7 years every year. Was told every time, the same thing, but come back n every 1 1\2 years. Did that, nothing. Now it is 2016 and after waiting 2 years before going back, nothing has changed. Do not, I repeat DO NOT, let this discourage you from doing what you think is best for you. I still would not let them go back and do anything else. I do have headaches every day 24\7, but at least I am able to get up and move around. A possibility that I might not have had if I had choose one can of the other options. Everybody is different, and will react to medicines, treatments c and everything else differently. You have to do what you think is best for you and your family. I did, and would do it again. Have a great weekend.

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#6

Thanks everyone.

#7

Hello, besides the medication, I was told to try to not over do it on the drinking of alcohol, as it disrupts the brain’s healing process.

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