Weird Sensations from gamma site?

Those of you who know me already know I am suffering from anxiety, so please humor me. Does anyone who has had gamma knife have any strange sensations (real or imagined) in the area that was treated? I have been having some very mild, but distinct, quick localized pain sensations in the area all day. It doesn’t really feel like it is deep in my head–but then again, my AVM is very close to the surface. My nerves are damaged in that area as well (from the Bell’s), and I have been having some periodic spasms in my face and scalp, so maybe it’s just that. What do you feel? Are you as paranoid as me?

Hi Marilyn
I also feel occasional stabbing pains or like a burning sensation on the treated site which instantly makes me think I’m about to have another bleed. I’m also not sure whether I’m just paranoid or whether these sensations are real. Then I try to remind myself that the bleeding pain was very different and by no means fleeting like these pains usually are.
I also know that you normally start experiencing the possible side-effecs from gamma-knife around 9-12 months after the procedure, but I’m not sure what exactly to look for. I know some people get localised swelling. How does this feel??

Thanks for replying! Liam, what you are feeling sounds awful! I am so sorry that you are going through this. You are one of the best people I have ever had the honor to know in my life, and it angers me that you should have to experience pain like this. Soili, your symptoms sound a lot like mine, and I am also sorry that you are going through this. The fear and worry are impossible to ignore. I wish things were different.

What I am feeling occasionally is not painful on the level that Liam is talking about, and I am not sure if what I feel is actually in the brain, or in the scalp above the AVM. My AVM is very close to the surface of my brain (which is why I lost the hair) so I am not sure if I would be able to tell the difference between whether the pain is half a centimeter deep or two centimeters deep. The feeling is like a quick, sharp localized pain, with no lingering discomfort after it passes. It scares me too, because of course, the first thought is that it is a bleed.

Liam, when did this start for you? Has it been present since the beginning, or did it develop over time?

Marilyn, the pain you’re describing sounds very much like what I wrote about in my blog last night. It’s not my normal headache, but it happens once in a while,

Hello Marilyn!I’m new here.I have an AVM on my right side,frontal and got treated with Cyberknife.I lost my hair in the area which got treated,it was about the size of a quarter.My scalp got on that spot sometimes all of a sudden really red and it burned like fire.My AVM is close to the surface too.My husband gives me always a light head massage and it gets better.

All of my headaches ease up when someone lightly massages my head too, Jessica.

Marilyn:

Charlie says he has what appear to be shooting pains (very quick ones, not long lasting)
towards thetop back of his head and sometimes in the vicinity of where he was treated. His
AVM is deep on the surface of the pons on the left hand side. I don’t know that he worries
about a bleed, or if he does, he doesn’t tell me anything. Hope this helps. He had Gamma October 12, 2007.

Hi Marilyn,
You are not paranoid. After my surgery and for a long time and even sometimes now I have those weird pains and even what I describe as wiggly worms crawling all over my head (does anyone else have these?). The wiggly worms are the worst for me because it feels like my head could get up and crawl away on it’s own. Sometimes the pains are mild and other times sharp but never long lasting. Of course the Dr’s said that they could not be related and I got used to them. I get very anxious every time I have them because I always think, “am I rupturing again?” I also had and still have sometimes the facial spasms but usually only on the right side of my face. I also have eye spasms as well at times. I did not have gamma knife but steriotactic radiosurgery.

Susan–I know exactly what you are talking about–I call them “my imaginary lice.” It’s become something of a joke in my house, because it’s like I am a person on drugs who thinks there are bugs crawling on them, when there are actually none. I even held a plate of cake up to my head over the weekend and sang “Happy birthday to you” for the amusement of my family.

Marilyn,
I like that, “Imaginary Lice”, my family thought I was nuts and the Dr’s of course said that it couldn’t be related. I am laughing and I called my new husband in here to read this and said see, I am not the only one!! This is such a weird feeling and I agree with you about a person on drugs. I don’t get this as often as I used to but still get it once in a while. This is such a good feeling to finally know that I’m not the only one about the side effects and things, I have been able to laugh about things more and relax more knowing that “I’m not CRAZY!!!”

I have this feeling Susan! I asked about it on this site last knight and i found that i am not alone. It is very annoying. I hate it! But the doctors couldn’t understand what i mean and couldn’t find anything wrong ,after gamma knife, in my EEG and MRI. (You can have a look http://www.avmsurvivors.org/forum/topics/a-very-interesting-feeling-in-my-brain?xg_source=activity)