Gamma Knife

I has anyone experienced a bleed after Gamma Knife? I had gamma knife in September and I am still very worried about my AVM bleeding again. I am so scared that I might have to go through this all again…

Hi Kristynn, one thing I am learning after my son was diagnosed with an avm was to take one day at the time. I am an anxious person, so thats is quite a challenge to me. I know how you feel. Thats the main problem with avm survivors, the fear, the uncertainty, but being scared does not help at all. Many here are going throught the same experience. Hope and faith are the answer. I try to enjoy and think positively about every day. It is the only thing we can do and that helps a lot. You are having the chance to treat the avm and in time it will be gone. Take good care of yourself.

I haven’t had a bleed, but I thought I did. My symptoms were vomiting and facial numbness, which turned out to be side-effects from the gamma-knife. I was told my chances of a rebleed were about 10%.

I agree with Erica that it’s important to enjoy and think positive every day. A few practical things you can do is that may allay your fears: 1) stay driving distance to a good ER, 2) get a medical alert bracelet, and 3) carry your angiogram results with you on a USB drive.

Stay Strong,
Ben

I had the gamma knife in 1995 and havnt had a bleed since. It is almost completely gone now, I was going to have it done again 5 years later but ended up not. The doctors told me the risk of it bleeding again is less than the risks of surgery.

I hope all is well !

– Shana

Ben< That was good advice,Maybe make a header or something with those 3 things…I didn’t think about the USB stick yet…Britt is doing a bit better today,stayed up for a stretch for a little while.She says the top of her head is numb,I am asumming that would be normal after all the shots and frame wear??? This is going to be a longggg two years isn’t it!!!

Well I had the Proton Beam therapy and it had bled after that. After they said I was cured and just out of the military it had bled again. And since then I had two gamma-knife treatments and no more according to the neurosurgeons. To much radiation in me. Ah well I do not know what they will do if it bleeds again. You see mine is located right or left in the middle of my brain. eeeehhhh!!!
So that is why they can not go inn and emobilize it or operate on it. I have to get zapped…
Well this past March I had a test done on me and I will propably get one in about another year and a half. They say it is still part of me but it may of got stronger. They can not tell. But I just have to rely on their words and live my life daily with no WORRY. eeeeeehhhhh!!!

I had the proton treatment in Boston and that uses a radiation beam that you have to sit in this giant machine and then you are zapped. You feel like the Incredible Hulk. But anyways my AVM had bled after that like seventeen years after that treatment. And they told me I was cured. eeeehhhh!!! So my AVM is still there after three treatments. And well it is going on the ninth year where I haven’t had a bleed again. Just hope I do not have another one. That feeling.

Its been one year after gamma, and no bleeds:) ,but I also didnt have one before the gamma, thank God!!

Erica said:

Hi Kristynn, one thing I am learning after my son was diagnosed with an avm was to take one day at the time. I am an anxious person, so thats is quite a challenge to me. I know how you feel. Thats the main problem with avm survivors, the fear, the uncertainty, but being scared does not help at all. Many here are going throught the same experience. Hope and faith are the answer. I try to enjoy and think positively about every day. It is the only thing we can do and that helps a lot. You are having the chance to treat the avm and in time it will be gone. Take good care of yourself.

Hi . My daughter has had 2 Gamma’s so far . Her third one will probably be in the early part of next year . It’s awesome to have this option as her AVM is inoperable . We were just set back in Nov of 07 because after 6years from the 1st Gamma Knife , the AVM ballooned out even bigger . Needless to say, I am very nervous as to what lies ahead . Good luck to you …you’ll be fine … :slight_smile:

its been one year after gamma,no bleeds but also I just found out no change at all,so,I wait,:)im just happy I didnt develop any new problems.Im positive all will work out,:slight_smile: Gamma is one of the best treatments if it cant be operated on.
I know the wait feeling…its terrible…
Kim ( Jaclyn’s mom ) said:

Hi . My daughter has had 2 Gamma’s so far . Her third one will probably be in the early part of next year . It’s awesome to have this option as her AVM is inoperable . We were just set back in Nov of 07 because after 6years from the 1st Gamma Knife , the AVM ballooned out even bigger . Needless to say, I am very nervous as to what lies ahead . Good luck to you …you’ll be fine … :slight_smile:

Hey Kim,

Well I had the proton beam which is some dosage of radiation and then I had two gamma knifes. I had my first proton beam I believe in '81, then my AVM bled again in '98 and I had the gamma knife in '99 and '03. They say that I can not get it any more. So if it bleeds again I do not know what they are going to do. Propably just lay me on that cold steel table again and give me another knife. eeeeehhhhh!!!

Kim (J’s mom ) said:

Hi . My daughter has had 2 Gamma’s so far . Her third one will probably be in the early part of next year . It’s awesome to have this option as her AVM is inoperable . We were just set back in Nov of 07 because after 6years from the 1st Gamma Knife , the AVM ballooned out even bigger . Needless to say, I am very nervous as to what lies ahead . Good luck to you …you’ll be fine … :slight_smile:

My avm is is the middle of my brain too…and so pretty much inoperable. I am curious about proton beam therapy. Is it similar to cyber knife and gamma knife?

Troy Garcia said:

Well I had the Proton Beam therapy and it had bled after that. After they said I was cured and just out of the military it had bled again. And since then I had two gamma-knife treatments and no more according to the neurosurgeons. To much radiation in me. Ah well I do not know what they will do if it bleeds again. You see mine is located right or left in the middle of my brain. eeeehhhh!!!
So that is why they can not go inn and emobilize it or operate on it. I have to get zapped…

Well this past March I had a test done on me and I will propably get one in about another year and a half. They say it is still part of me but it may of got stronger. They can not tell. But I just have to rely on their words and live my life daily with no WORRY. eeeeeehhhhh!!!

Well it is like gamma knife or stereoactic sugery except when I had it done I was sitting down in a large machine and then they lowered the plate on to me and then I was zapped. So many years ago. eeeeehhhh!!!

I felt like I was David Banner going into that surgery. I thought I was going to be a hulkster when I had gotten out of the treatment, but never happened.

Dianne Tinman said:

My avm is is the middle of my brain too…and so pretty much inoperable. I am curious about proton beam therapy. Is it similar to cyber knife and gamma knife?

Troy Garcia said:
Well I had the Proton Beam therapy and it had bled after that. After they said I was cured and just out of the military it had bled again. And since then I had two gamma-knife treatments and no more according to the neurosurgeons. To much radiation in me. Ah well I do not know what they will do if it bleeds again. You see mine is located right or left in the middle of my brain. eeeehhhh!!!
So that is why they can not go inn and emobilize it or operate on it. I have to get zapped…
Well this past March I had a test done on me and I will propably get one in about another year and a half. They say it is still part of me but it may of got stronger. They can not tell. But I just have to rely on their words and live my life daily with no WORRY. eeeeeehhhhh!!!

My wife had her GK in April 2010 and getting closer to one year. She is experiencing more seizure like tingling in her right arm and now traveling to her rt chest where she feels heavy pressure.She can also feel it travel up her rt side of her neck. Has anyone have this same symptoms??
She today is now switching from Keppra to Vimpat a newer drug. Keppra has stop working. She was on 6000mg keppra and at bedtime 1-3 Dilantin. To much meds.
Anyone please?

My daughter had her first and only bleed 13 years ago. She has undergone numerous embolizations and gamma knife surgery since then. Her doctor, Dr. Lunsford of Pgh.,PA, has kept a continuous watch on this nasty avm since then at various intervals with mri/angio. We are blessed that she has not had a rebleed. I don't know if this is the norm or not. It would seem the chance of a rebleed would lessen since the gamma knife should be obliterating the avm over time though. There is a lot of information out there as I believe the diagnosis of an avm is becoming more common to technology;but, our best source has been our doctors (Dr. Lunsford & Dr. Horowitz of Pgh.,PA). Prayers.