For the ones who have had gamma for ther brain avm,what was the time it took before it started to shut down, a few weeks ago I seen my doc who said ( and i posted) that it is shutting down 80 % ,I was on cloud nine,but had a gut feeling because he just looked at in for a few minutes by holding it up in the air,I kinda seen a doc who didnt know much, anyways,today my gamma doc said there is no change at all…none!! still thesame,and will have another mri in august and if still no change then gamma agin or look into options.just wondered how everyone elses went, Thanks Caroline
2 years after the Gamma I had a 25% reduction. Usually it takes up to 3 years for 50% or more obliteration.
hi Brian,my doc told me a lot of people have up to 80% shut down when got this news I was like OMG ,now what, your avm is still active rite? did you have to have more treatments?
Hi Savinder, yeah im much better today, this stuff will not get me down,:)Just was told one thing by a ding bat doctor,that gave me great news ,then I get the truth,anyway,The gamma doc this is normal and it can take many years,I just hoped for some kind of change,my avm is happy rite where it sits:) lol
We were told my son would have another angiogram at 4 years. They said after 3 years, there ‘might’ be something visible on the MRI. The success rate for his Gamma treatment was given to us as around 60% that it would be totally obliterated by the Gamma first time. It is such a long long haul. When I think about it, I just shake my head.
Oh, Caroline…I can’t believe that idiot would tell you such a thing when he obviously doesn’t know how to read a report correctly! To tell you the truth, I had been surprised at how fast and well your gamma treatment had worked! Hang in there…it will still work…just doing the job slowly so it’s done right!
Hi Connie,I cant believe it as well,But you know when you see a doctor and just have a feeling he’s an ***, I just knew,because he just held the films up in the air and said oh shut down 80% ,I just knew he was no good,Then the gamma doctor called a week later with the real report,of no change at all,same size,but the radiation takes time and will do more tests come August of next year,so I wait!!will not let it get me down,I will have some words for the *** doc in St PETE ,Just wait,hehe
Hi Joy,does this mean he has toi gamma twice,gosh,I hope not!They say with adults it takes a long time,so I wait,no fun living ina state of worry! how much has his avm shut down and how long from the first gamma?
Caroline, There is a possibility that he might or he may have surgery at that time if it doesn’t completely obliterate it. But I guess there is still a 60% chance in favour of it working completely. He was told that because his is 3cmx3cm, there is a higher chance that it won’t work completely with one treatment. But we can only hope and pray, right? He only had his treatment on July 2 so we are only 4months past his treatment date.
I’m sorry you had your hopes up and then crashed again. We just are so ‘hungry’ for some good news, aren’t we? I thought all along there would be some miracle cure for my son and when there wasn’t, I was so devastated. It is still so difficult. You must be on pins and needles. My thoughts are with you.
Hi, I am new to this site but wanted to say something to Caroline…have you ever heard of Stereotactic Radiosurgery? I don’t think there are many Dr’s who perform it; the equipment is highly technical and expensive, but it might be worth it to see if anyone near you performs this type of radiation. I had mine done at UCLA and my Dr. has a 100% rate of success, which means obliteration at two years. Just had the angiogram (3 yrs later) and the AVM is completely closed up. Do an internet search on “stereotactic radiosurgery”. Hang in there, you’ll find a solution!
Hi Leslie,is that the sam as Gamma knife,I think it is,?
Hi everyone ! My daughter has been thru the ringer w/Gamma Knife . Ok …here we go …She bled in 2002. We were told her AVM was about 4 cm. They did one embolization and was told the area was too large and that Gamma Knife would be the best option as the location is deep in her left occiptal lobe. We went for Gamma Knife in Feb of 2003 and can u freakin believe that Gamma is in ‘out patient’ procedure ! We were in the middle of a snow storm so at midnight when she was finally released from recovery, we begged to let her spend the night in the hospital . We just slept by her side . From that point she had MRI’s every 6 months for 3 yrs as they said they would expect no change for at least 2-4 yrs . Her MRI’s were looking good at this point so they scheduled an angiogram in 2007 with the probability of doing some more Gamma Knife at the same point to ‘finish up’ the AVM. So feeling pretty positive about this angiogram, praying for good news …we were pulled in by the doctor for him to tell us that the original location of the AVM is gone …YYYYAAAHHOOOO …BUT …BUT …that a new area has ballooned out twice the size . Now we are looking at 9 cm ! What the ??*&&^%$ oh and they could only Gamma Knife 1/2 due to it’s size and to schedule another Gamma next year …So here we are . She had an MRI in June …went to the dr …he had an emergency surgury and couldn’t see us . So here were are 1 yr later . She had her MRI last week and we are scheduled to see Dr Rossenwasser next Friday the 21st to schedule another Gamma. Please pray for us as she is not feeling well as I sit here and type. So Caroline , I don’t want to bring you down, everybody’s situation is entirely different. Always hope and pray for the best as miracles do happen as I have read on this site . Everybody is pulling for you .
Ill look into it,I almost felt radiosurgery was the same a gamma? is it?
My Gama Knife was sucseful… until I popped.
Then I got a bunch of stuff that I seem recall was black… I don’t know where I am now… I really don’t care.
My poor guy, DR., had a good record, until I showed up.
HI CAROLINE. IT’S MY FIRST GAMMA OPP.I DONT FEEL ANY DIFFERENT, JUST WORSE, MY HAIR IS GETTING VERY THIN AROUND THE SIDES, I WILL BE ASKING THE GAMMA DOC WHEN I SEE HIM IN 2 WEEKS, I WAS TOLD THIS WAS RARE, I DONT KNOW IF I WILL BE GETTING ANY MORE TRETMENT YET, DONT KNOW IF I WANT TO! I’V LIVED WITH IT FOR 47 YEARS SO WHY START NOW AND DEAL WITH IT.
Had my 2nd post gamma CT Angiogram last Sept 2011, about 32 months after my gammaknife. The result shows no change at all. Same size. It crushed me. I’m so hopefull. Now, I don’t want to think about it. My family still doesnt know of the result as I did the CT Angio alone.
I have read in ohters blog that it took 4 years for their AVM to be gone. Hoping that mine will be gone ALSO.
Hi Cherry,I sure hope its gone, and yes the gamma does work for almost everyone post a year or two,I think it helps too with age, younger is better for some reason, dont ask me why.but results seem to be more effective with gamma from past postings ive seen.I see your 32 months post gamma with no change ,stay positive ok,I myself am going on four years now with only one treatment of gamma and no changes at all, last look was around 7 months ago with no change at all,so now ive just stoped looking, I have no avm problems except headaches,I stay on the seizure meds to make sure of no more of them,m avm is 32mm left temprol lope ,but all is good thank god! so im just going to let it go unless it starts to ask up, and truly its been great,I had more problems with tha gamma, and am not about to have it again, and so who knows, the avm could be gone now…:0 ) think positive and God bless