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AVM Survivors Network

A very interesting feeling in my brain


#21

Hi, I had gamma knife surgery performed on my avm about ten years ago now and had lots of migraines after it (probably due to its particular location) , but no seizures, weird feelings or anything like that. - some slight numbness on the scalp though.
Oh, and I think a lot of people find that the surgeons can't understand what is being described to them, there are so many different possible reactions and consequences of the various treatments, there's no way they can hear our interpretations of what it feels like from the inside and then grasp exactly what our situation is.
sincere best regards.


#22

Hi Pete, thanks a lot for your comment, i have no seizures but sometimes headaches and the feelings, i know it is impossible to understand what a patient means even if the patient doesn’t know what she feel, to find what i feel and explain it in an understandable way is my job, of course my doctor can’t find it that’s why i asked for it here because there are many people have avms and maybe they can help me to explain my situation better. I’m trying to find the best way to describe it so that next week my doctor can give me a solution. From the beginnig of my avm survival he gives me effective solutions in the light of Angiogram, MRI, EEG and the other tests because he knows what he sees so if i can explain my situation clearly, he can help me.
Best regards.


#23

Yes. I asked my doctor about it and they said a lot of AVM patients have told them that. Didn't say why it happens. I figure it has something to do with changes in blood flow as in the AVM. Maybe it is a good thing. But yes it is very annoying.


#24

Thank you very much Melissa for your help :slight_smile:


#25

Hi Flo, i have this shaking ( but it ends very quickly just 1-1,5 second) for more than 8 years, before 2-3 years it occurs 1 time in a month but now more than 3 times in a day so I’m getting nervous. And it seems not normal from the public because i can’t hide it and i need a certain solution. I think i need to see a neurologist.

Thanks :slight_smile:


#26

River,
I’ve never had any procedures. Upon review of an MRI ordered by a local neurologist, I was referred to a leading neurosurgeon at Emory hospital in Atlanta. I had begun having debilitating daily head pain in June 2007. After reviewing my MRI he said I didn’t have an AVM but something called medusa caput. I’ve just read your message & replies regarding strange sensations following your gamma knife procedure. I too have wriggling worms sensation over the spot where my vascular anomaly is located. I’ve also experienced the instantaneous “buzzing electric shock” sensation. Additionally I’ve felt as if someone is gently touching this same spot. These sensations never happen simultaneously but the touching & worms part occur in this same area. Since being ruled out as a candidate for surgical intervention I’ve attempted to explain to my GP these exact sensations only to be met with quizzical skepticism. I appreciate so much your message because I finally feel validated. It concerns me because you & others have had them after medical treatment. I do notice the slithering worms sensation seems to occur more often when barometric pressure fluctuates radically or my blood pressure is elevated. Sorry for the length of this reply. On Monday I got a call from my GP’s ofc informing me my last MRI two weeks ago was WNL (within normal limits). Somehow it feels strangely comforting to know I’m not imagining this stuff. Thanks again.


#27

Hi Gigi, thank you very much for your comment. I’m happy to hear that these comments help you to feel more comfortable. I thougt that these feelings are because of my AVM or Gamma Knife but actually the first time a felt it was 6 months after gamma knife so that’s why i thougt it is because of gamma knife but of course I’m not sure. And you haven’t had any procedure so maybe there can be another cause under this situation. I hope they will be all gone one day :slight_smile:


#28

The only thing I can offer is that the blood flow through an AVM can be audible not only to yourself but to others. Rather than hearing it you may be feeling it.


#29

Hi River. I just came across your comments. I too have weird feelings post gmail. I have electrical zingers from my neck base. (Mine up again brain stem). These zingers travel up into my head. Afterwards my scalp is swollen, itchy and painful. I also feel a little off balance after.


#30

I meant post gamma not gmail.lol


#31

I can feel my AVM at all times. It feels like my brain is holding something.


#32

Had Gamma on 9/14. Last Friday. Had 3 AVM’S. 2 in one location and all 3 were Gamma Knife. So now starts my wait.
My head feels like a “cone head” ,from the old SNL days. Some swelling at one pin site and all are painful. Weird sensation I would compare to feeling like a football helmet head…numbness, yet tingles. My hair feels weird too.
I am wondering how long this will last. Going to call Neuro Dr on Mon.
Take care all.