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AVM Survivors Network

Gamma Knife side effects


#41

Hi my name is james I had my X knife in 98. In oct 2010 it was gone, I still have a lot of memoey issues. Worst thing ia the Dr that preformed X knife on me went to another hospital. the new Dr. told me my AVM. was gone. He was like your cured, but he never addresed my memory problem, just told me if I have any problems do not come back just go to my reg Dr.
Loretta H. A. said:

Hi there.

I had gamma knife 15 years ago. It proved successfule after 4 years. However, as a result I became an epileptic and was recently diagnosed with MS. But I am a fighter and I am here. Good luck and God bless you.

Loretta


#42

hey james ive had gamma knife 5 times and only after my fifth surgery did my memory go i guess it just depends on what part of your brain you had the surgery on.

james hurley said:

Hi my name is james I had my X knife in 98. In oct 2010 it was gone, I still have a lot of memoey issues. Worst thing ia the Dr that preformed X knife on me went to another hospital. the new Dr. told me my AVM. was gone. He was like your cured, but he never addresed my memory problem, just told me if I have any problems do not come back just go to my reg Dr.
Loretta H. A. said:

Hi there.

I had gamma knife 15 years ago. It proved successfule after 4 years. However, as a result I became an epileptic and was recently diagnosed with MS. But I am a fighter and I am here. Good luck and God bless you.

Loretta


#43

I have had two gamma knife sessions, with the last one about three years ago. I had general symptoms (numbness, tingles) which is why I elected for treatment. About a year after treatment it is at its most effective (doing the most 'shrinking of vessels). In me, both times. I experience quite bad odema (swelling) which aggrevated all my symptoms. On and off for about 9 months I was pretty scared with random 'numb ups' as I called them, sometimes leading to uncontrollable hand shakes over about 3 or 4 minutes. I was put on anti-inflamatory drugs to reduce swelling but I'm not sure it helped. This did pass though.

Everyones symptoms are different, and the swelling just aggravated the ones I was getting, but it did calm. Did I do the right thing? Absolutely. Trying to look at the bigger picture you hope all will be okay in the end. My AVM was diagnosed as obliterated last Friday.

Marc


#44

Hello Marc,

I had Gamma Knife Sept 2009 and my symptoms are very similar to yours. I too have quite a bit of edema and am on cortisone (which is a very difficult medication!) I am at the year and a half stage of the treatment and I guess it's at its peak therefore most of my side effects are happening now (numbness that comes and goes, seizures etc.) I really enjoyed reading your success story as it gives me lots of hope!

Thank you,

Melissa

Marc Wilson said:

I have had two gamma knife sessions, with the last one about three years ago. I had general symptoms (numbness, tingles) which is why I elected for treatment. About a year after treatment it is at its most effective (doing the most 'shrinking of vessels). In me, both times. I experience quite bad odema (swelling) which aggrevated all my symptoms. On and off for about 9 months I was pretty scared with random 'numb ups' as I called them, sometimes leading to uncontrollable hand shakes over about 3 or 4 minutes. I was put on anti-inflamatory drugs to reduce swelling but I'm not sure it helped. This did pass though.

Everyones symptoms are different, and the swelling just aggravated the ones I was getting, but it did calm. Did I do the right thing? Absolutely. Trying to look at the bigger picture you hope all will be okay in the end. My AVM was diagnosed as obliterated last Friday.

Marc


#45

Reading through this I’m now getting scared. I had gamma knife surgery Sept 2009 and have been having problems with fine motor control of my right hand for about a month. Since last week I’ve been feeling nauseated all the time (started the day after I saw my neurologist before he went out of town). Right hand is getting weaker to the point where I dropped my coffee cup this morning. My neurosurgeon is out of town also but his office scheduled an MRI for tomorrow morning and a followup with the nurse practitioner and one of the fellows. So we will see…


#46

Hi Jessica
Please don’t worry. The AVM is pushing on areas of the brain and that is creating our initial symptoms. Although my symptoms got worse during the peak GK activity stage this is actually a good thing. OK the extra symptoms are not great, but the work is being done. Vessels are moving around and shrinking, and the AVM will be reducing. This is all great news! Think of the extra symptoms as a ‘no pain no gain!’. They will pass after the GK has done its job and everything calms down again.

My doc gave me anti-inflamatory drugs during this stage to reduce the swelling. Take care.

Marc


#47

Thanks Marc - that's exactly how the ANRP at the neurosurgeon described what's happening. The good news is no bleed and no stroke, and it's continuing to shrink. He said that the area of radiation damage to the white matter has increased from last August. But the main thing is that there is swelling in the area that controls my right hand. I'm now on lots of steroids to reduce the swelling.

Thanks again for your kind words.

jessica


#48

I had the GK in July 2010, and I am still having headaches several times a week. Some are mild, and some are severe enough to make me sick. During the headaches, I feel nauseated most of the time. I have been considering marijuana if I can find a doctor that would prescribe it.

Washington State is a medical marijuana legal state, but the hard part is finding a doctor to prescribe it. I sure don't like to take the opiates. I think they are far worse than marijuana. Cancer patients use it for nausea while taking chemo, so it should work for nausea that comes from severe headaches. Anybody ever try it?


#49

Hello Jessica,

I was curious the meds you are on for the swelling. I too am on cortisone due to swelling from GK. They do weird things and make me feel crazy at times. How are you feeling being on them?

Thank you,

Melissa


Jessica said:

Thanks Marc - that's exactly how the ANRP at the neurosurgeon described what's happening. The good news is no bleed and no stroke, and it's continuing to shrink. He said that the area of radiation damage to the white matter has increased from last August. But the main thing is that there is swelling in the area that controls my right hand. I'm now on lots of steroids to reduce the swelling.

Thanks again for your kind words.

jessica


#50

Hi Donna,

I just found your question. I just last week had my large (5cm+) AVM treated with the X-Knife in Dunedin, New Zealand.

It had to be prepared first with a partial embolisation as it was too large to treat in one go, and I had more side-effects from the embolisation than the Radiotherapy, but that's not to say Matt will experience the same - or different.

Everyone's AVM is in a different spot and configuration, and I think of my self as one of the incredibly lucky amongst us that it seems not to have had any side effects - yet. Perhaps in a year I shall experience headaches and so on, but at the moment all I'm taking is a steadily reducing course of Cortisone that makes me hungry, wake up far too early and feel a bit "mad".

And honestly, I had some mad phases before anyway - definitely associated with the AVM, as they were strongest after the embolisation; I would stand in the supermarket trying to make a decision whether to buy an extra loaf of bread or something, and end up pulling it out and putting it into the trolley, then changing my mind and putting it back. Over about ten times, while standing there!

More recently I did the same with making a sandwich, opening and shutting it repeatly as I decided whether to add tomato or not. Didn't in the end, but the bread got pretty knocked about. Probably should have got an extra loaf :)

But that stuff is nothing, and I am pleased that as yet there's nothing undue showing up.

I found the whole procedure relatively un-scary for some reason, probably that I was doing something positive with the AVM that had been such a epilepsy-causing hassle to me for nearly 30 years.

No-one can, of course, predict what may happen as an after-effect. The rays passed through some functional tissue at the same time, so perhaps there is some further complications to come for me?

Anyway, I know you must go ahead with what could prove to a life-saving treatment for Matt, try not to worry too much about what may or may not come to pass -

I wish you all the best

Phil Wollerman


#51

Really hope you are feeling better now and showing progress on your treatment!

ron ryan said:

wow. most of you are lucky. i have an avm, which has left me paralyzed on my right side, arm and leg. i have done the gamma knife thing in sept 08, and it is now oct 09 and still the same. now, it took 3 months after the treatment before i seen myself go paralyzed due to the swelling. during those 3 months i felt queezy after driving, eating, and tired but other than that i thought everthing was fine.

the doc had me on steroids but my body couldn't handle it and the weight gain was too much, even have stretch marks, badly. so he said to be patient and wait it through. now it has been 13 months and still no change. things have been quite challenging. i've tried walking, nerve stimulators, everything you can think of, i've tried to get my body to recover from this.

#52

I just had mine in February, had 3 massive seizures that night, one after the other, I've lost 3 days memory completely and its never come back, I've had 2 further seizures since and lost my driving license, the headaches have never gone away, the fatigue and weakness is horrible, I cannot walk further than 50 yards without pain and fatigue and 2 months on it's not improving. Mine is in the motor cortex, I had 33 grays of radiation for 3 hours, a long time to be in the gamma knife machine. No one knows if I will improve, or get worse as this often happens months down the line.

I guess every brain reacts differently and much depends on the size and location of your AVM. Some people are lucky and have no side effects, return to work and carry on like normal, others are not so lucky, at the moment I'm in the middle, I can still move, so for that I am thankful.

I noticed your post was last year, how did Matt react to it?


#53

Hi!

I have just undergone the Gamma Knife procedure today, under the care of Dr Isaacson and Dr Ghattan in NY. I must say that I am feeling a bit woozy, tired, and have only a mild headache as long as I maintain full coverage by Tylenol. It was a long day, entered the hospital just after 6:00 AM, and left at about 4:30. I can not say it was not painful, but I am glad to have turned this page in my life, and hope to move forward from here. Reading about everyone else's experiences, I hope I do not experience any of these symptoms, although the dr did warn us that I might have a few seizures, and if one was to last longer than a few seconds I am to rush to the emergency room.


#54

Hi Birdie,

Had to reply when I read your statement that you just had it today. I had it 18 months ago and the first night I had several seizures, although I have never had seizures before. 18 months later and 3 MRI checkups later, I have had no shrinkage but I think the blood flow has been altered as thankfully my bruit is quieter. I do get massiive migraines now that last for 15 days or more. Anyhow, I remain grateful to be alive and with my cerebral and physical function and will just learn how to manage the migraines when they strike.

I just wanted to tell you to don't panic if seizures strike tonight after the procedure. Of course go to the hospital if they are really long etc. Mine haven't returned and although my brain burns and my headaches are very painful, I am alive and hopefully will not lose function.

Take care

Leeanne


#55

Wow, scary story. Glad you made it through the process.

Chari had the halo thingy the first time, but didn't experience the pain with the screws. She said she could feel the pressure as it tightened, and the sounds her cheek bones made as the screws tightened disturbed her.

Best wishes,

Ron, KS


#56

I just had Gamma Knife surgery about 2 weeks ago, I believe it was a total of 16 grays radiation dose. I didn’t have any symptoms at all, I feel great, I did get a couple of migraines and feel a bit tired, still on seizure meds but did not get any seiuzures at all. It was fast and the hardest part was the angiogram, but not as bad as I thought it would be. Trusting in God!


#57

ive had 2 doses, with no problems.


#58

I had the surgery on feb 19th at Pitt University by Dr. Lungsford and I haven’t had any Migraines plus I feel energized although they did mess up with the angiogram. They had to do it a few times because they didn’t have the magnets aligned right which hurt like nothing I’ve ever felt before. I thought my brain was gonna explode .


#59

Plus my vision isn’t as good as it was before the surgery. Small things are blurry.


#60

Hi Christopher,

You are the first person I met who had Dr Lungsford too. He did my GK in 2007. I just wanted to say: "Hi".. :)

Ben