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AVM Survivors Network

Gamma Knife treatment


#1

Hello friends,
So in was treated for a 5cm AVM when I was 11 or 12. However a year ago they found that 5cm was left which they called a residual. Anyway, I was treated with GK and had my 1 yr check up in October. The an goo showed that there was still a lot of swelling and no change to the AVM. The neuro doc told me that it’s a 2 year wait and sometimes it takes the entire 2 years to go away. I was wondering if anyone els have had no change in the first year and the avm be completely gone he second. Thanks


#2

I am waiting to have gamma knife treat the last 10% of my AVM. My doctor mention that what you describe is possible so I am interested to see what anyone else may say.


#3

Hey thx a lot for your comment. My Dr told me that he has seen it happen several times, but I’m not as trusting as I use to be. Also, please feel free to ask any questions that you may have. I’ve been dealing with my AVM on and off for 20 years.


#4

Hey... :-)

I was treated for my AVM 1 year ago. I was told that I should not expect anything to happen the first year, and that it can take up to 4 years before the gamma knife treatment has had it´s full effect. The most people will - if the gamma treatment has effect - be free of it from 2-3 years. This is also the info I have been able to get from looking around on the internet.

So I think it is pretty normal what you have experienced after the first scan...

all the best to you :-)

/Allan


#5

Allan,
Thank you very much for taking the time to respond to my message. It gave me a bit more faith in my situation.


#6

no problem :-)

Pleace ask if there is anything else I can help with. I am going for my first scan in 2 months (1 year). I am pretty sure that my scan will show the same as yours..., swelling and nothing else. I am even still on steriods because of the swelling. It is like I feel from time to time that the swelling is going up and down, with different symptoms to follow... But I know that the swelling is also a good sign on the effect of the gamma :-)

/Allan


#7

When you say GK how much radiation did you receive? How many days of radiation and how many Grays each day?


#8

How much radiation did you receive? How many days and how many Grays each day? Have you heard of proton radiation??


#9

Hi! I have a son, 20 years old, and he has an AVM that is inoperable. We have now been offered radiation. They told us that they ususally do it in 1 time and a high dose but since the location of the AVM is so close to "speach" they want to do it on 2 occations in one week. It seems like they want to do Proton radiation, we are to decide how to proceed the next couple of weeks.
Best regards,
Cecilia from Sweden


#10

Hey..

I had my GK one time. A very high dose was delivered to the AVM from 12 different angels (also with 12 exit points - 6 weeks after the GK i started to look like a chess board, because of hairloss - it came back again!). I was told that normally they only do the GK one time, but i some situations they have to do it over 1-3 times depending on size and location of the AVM.

All the best to you Cilla, hope the best for your son :-)

Allan from Denmark..


#11

Hi Allan! Nice to hear from you!! As you say becouse of the location they need to do it 2 times, they also say that loss of hair is very common. If Simon decides to go on with the radiation we are supposed to go to Uppsala, they have a new center there for Proton radiation. All the best to you and hope you are doing fine!
Cilla


#12

Hi Cilla. I’ve been offered proton radiation also for my fourteen year old son. It seems like it’s a good treatment but not many people have heard of it or had it done. They want to do two sessions on him also. Did they tell you how many Grays of radiation?
You are the only one I have found mentioning radiation. Please get back to me. I have to decide next week.
Thank you
Ana from California


#13

Titos,
Hello. So I had one round of radiation when I was 11 and they thought it was gone. However, they didn’t know as much about Ava’s then as they do now. They only checked after a year with a MRI and not an angiogram. 20 years later, I started having terrible headaches and found that there was still a small piece left. This time I received one txt of radiation and was released the same day. The only issue with radiation is that it can cause radiation necrosis and rumors in the future but chances are low for tumorS. I did get necrosis, however, they gave me steroids and the headaches stopped immediately. The swelling is gradually going away. Mine was also inoperable. Please let me know if you guys have anymore questions.


#14

It does take 2-3 years for GK to fully take effect. I've actually had 4 GK treatments. The original plan was for 3 rounds: June 2011, December 2011, June 2012. In June 2013, they could tell it was working. In June 2014, there was still some AVM left, so that's when I had my 4th GK treatment. Checkup in June 2015 showed that it was still shrinking, but not yet gone. We'll take another look in June 2015.


#15

Each round is how many grays of radiation Collins?


#16

Hi friends. I keep asking if anyone out there has heard of proton

radiation but I hear nothing. Am I the only one who is wondering about proton radiation???


#17

I have AVM on my left side very close to my speech center. It was recommended radiation treatment from several doctors as surgery might be very risky. I ask a lot what type radiosurgery will be the best in my case (Gamma-Knife Cyberknife, Novalis..), but it seems like every clinic offered treatment according to what type of machine have in their facilities. I also ask my doctor about possible Proton therapy since he was doing both Gamma and Proton and I was told that according to my location, the data and the experience they have the best guess was the Gamma-Knife. Im not a doctor according to what I've read about Proton therapy over the internet it has very positive features and lower risks than any other radiation therapy.
Anyway I have had Gamma-Knife(since it was recommended(from 4 out of 6 doctors) on December 2015, until now I had no side effects, or at least nothing serious. Heartburn for first few days but I was told that this is side effect from the steroids Im taking, of course the heartburn went away after stop taking them. Also for few days I had that noise and sound in my head/ears like a tiny small fan buzzing at night when it was def salience and bother me cuz it would took me long time to fall a sleep. Im still having sometimes but not in that volume.


#18

Each "round" was one day of treatment.

The first time, I had an hour and 45 minutes of actual radiation in the GK machine. Each time was shorter. I think I only did 30 minutes the 4th time.


#19

Hi Ana, We did not get any information about how many Grays of radiation. We are going back on the 10:th of February and by then our son must have made a decision. If he (we) decides to go ahead with radiation treatment they will do more investigations and there is also a possability that they decide to go with Gamma Radiation treatment, but as it looks now they want to do Proton Radiation. I feel that whatever they decide to do we will have to trust that they will do what is best for our son. I wish you all the best and your son will be in my prairs. Cilla


#20

Hey AVM family,

So I just had my 2nd year angiogram and the AVM is completely dead! Guys keep your heads up and I will continue to pray for you all