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AVM Survivors Network

A very interesting feeling in my brain


#1

Hello everybody. I’ve had Gamma Knife about 1 year ago (17 january 2014) and i think since 6 months i have a very interesting feeling in my brain generally at nigths. I know , brain is senseless but 6 months ago i woke up with that feeling, it is like my brain breath or like firstly getting bigger and than feel very very relaxed after an electrical discharge (i can’t explain that feeling it is very interesting) and the feeling lasts 4 seconds and it continues about 3-4 hours but very annoying. I asked it to my brain surgeon and he wanted eeg and mr but he couldn’t find something. This occurs 5-6 times in last 6 months and also yesterday. I’m curious if there is someone here who can understand me and maybe say it is because of GK or AVM or something else… and i have another problem, too. My body vibrates about 1 second and 4-5 times in a day. Some of the doctors say it is normal, it is because of the different temperatures in the body but some say that it is a sign of seizure. If someone can help me, i will be very happy and thankful because the surgeons know so many things but cannot understand the feeling i feel… thanks.


#2

River, I had Proton Beam Radiation and didn't have these issues, but I really want to know if having Gamma Knife Radiation is different and what the difference is. There are many members who had Gamma Knife on the Network. Am very interested in reading the members responses.


#3

Hi. My husband had the shaking body in the night before his AVM brain surgery and we were told it was seizure activity due to the AVM. He had other seizure symptoms - stopped talking for a few seconds and lost his train of thought - his face looked pale and his hand opened and shut by itself for a few seconds also. No loss of consciousness. Unpleasant but not life threatening. After surgery these cleared up although he had some personality changes.


#4

I had Gamma Knife and about 1 year after that I started feeling a sensation in my brain (in the AVM location) that was akin to a bunch of worms moving around. I attributed to the Gamma Rays effects (shrinkage, etc) coming into effect.


#5

Hello Lousia, last year we’ve searched all the techniques before my gamma knife radiosurgery and my doctors said gamma knife was the best way for me; because of the size, place, type and the other things about my AVM. My doctors and i think that gk is doing its job, my avm is getting smaller every day(i will have a control and MRI next week) and my doctor says that in 2017 it will be 100% gone. Gamma Knife is a radioSURGERY and very effective in a few months ( for avms 2-3 years) but i think Proton Beam Radiation is a RadioTHERAPY so there should be 15-18 seans -but i am not sure you know the best about it) however 1time gamma knife radiosurgery is enough for treatment.


#6

I have that feeling off and on. Feels like someone tapping their fingers lightly from the back left side of my head and works its way up to the front.


#7

Thanks for your comment river! I would like to clarify something: "1 time gamma knife radiosurgery is enough for treatment"... In my case I needed to have 3 Gamma Knife sessions. There are others that have 2, 1, etc. It depends really. Just wanted to clarify that.


#8

Oh yes, you are right. I just thougt about only my situation and what did my doctor say about me. But yes he also said " after treatment we will see your situation and after 3 years maybe we have to do it again. 2-3 times gk is possible" but the results of mine is good and i forget the negative things he said before surgery. Thanks for the clarify.


#9

My son had gamma knife radio surgery 4 years ago, he is now 10, and he talks alot about weird sensations in his brain. Sometimes he said it feels like there is blood flowing over it, other times he complains of a headache. His dr said not to worry, these could be tension headaches, and that if it were an avm issue, it would be the major headache he had when he bled, or a seizure. So I try to relax him when he has these episodes and they pass with a little time.


#10

Yeeess!!! That’s the feeling i feel and can’t explain! Like worms moving around… thank you very much! Do you still feel this effect?


#11

No, have not had it for a while now, for about a year. I do feel other feelings like a soft of pressure sometimes.


#12

Susan T also described something similar previously.


#13

I get pulsatile tinnitus, but I am unsure if its connected to the AVM or the treatment. I don't think it is. This is like a pressure wooshing in the ear, but to a regular beat. I normally get it when I'm tired.


#14

Yes, my dr said the same thing. He said that i have an avm, it is the truth and we have to be realistic; headaches, seizures and some other things are possible. I can understand your son well. I hope he will be 100% well soon.


#15

Michelle, I had tinnitus before I had my radiation, so I think it has something to do with the AVM not the radiation.


#16

My first response didn't mention that I had a massive brain hemorrhage 6 months after the radiation. Now, I choose to have radiation because the percentage for me to have a rupture was extremely high due to my age and the size and location of my AVM and that perhaps the radiation would prevent my AVM and perhaps prevent a hemorrhage. I also was told that the Proton Beam Radiation may remove the AVM, but there was a 2 to 3 year waiting period before the radiation could work. Thankfully, the angiogram at the 2 year mark informed me that I was AVM Free.

Since I keep in touch with my AVM neurosurgeon, I sent him an email today asking him if the issues our members have are the same even if they take Gamma Knife, Proton Beam or any other type of radiation and his response was that all types of brain radiation for AVM's have the same various side effects. I have wanted to ask him this question for quite some time and thankfully today he responded. Yes, he's a wonderful, caring individual who will respond when I ask him questions for our members.


#17

Hi River, I had gamma knife surgery September 2013. Since my GK I have had adational problems. Some of the same sensations you mention. My biggest issue is when I bend my head down the headaces get a very bad. At my one year angioplasty it showed I had 45% shrinkag. Which is ok not great but better then 0-44 :slight_smile: So I Hope with time some of my issues will stop. Right now I am on Gabaptin 300mg one in the am and one in the pm. When the headaces get very bad I take obe Butalb-Acetamin-Caff it takes the edge off the pain. I try not to take them unless it’s very very bad.
Prayers to you on your recovery.
Niyani


#18

Thank you very much for your kind informations and also thanks to your wonderful neurosurgeon:)


#19

Thanks for your comment Niyani, i have sometimes headaches, too but my biggest issue is that feeling. I take some light medicine when i have headache and than i can cope with it but there is no medicine for that annoying feeling in my brain but i will ask for it again to my dr next week after my control MRI.
I hope you will get rid of the headaches soon.


#20

I got that after embolisations and gamma knife on my avm, the whooshing gradually reduced over a few years...(still got tinnitus though, although that could be due to too much loud rock music in earlier times)