Just wondered if anyone else who had had stereotactic radiosurgery (for a brain avm) has recurring pain from where the frame was held on the head (the pin points) two years after surgery Gary still really suffers with pain and what he describes as what feels like an electric shock when he touches one on the back of his head? Not sure if it’s because he had three courses of STRS so close together? Or if it’s a normal thing after having the frame on your head?
Be great if you could let us know if you’ve experienced or are experiencing similar issues.
Kayleigh and Gary x x
I wouldn't think the frame points would be a problem 2 years out.This post caught my attention when you mentioned electric shock pain.I have an AVM that caused me to have TN(Trigeminol Neuralgia.It is a debilitating pain that manifests as a electric shock,lightning bolt severe pain that lasts a few seconds.I truly hope this is not what you have.I had my AVM treated with cyber knife,but the TN pain returned terribly,so i had gammaknife spefically for the pain.Im TN pain free now for almost a year thank god.
I had that frame drilled into my head twice. I never had the shock pain he describes. I had a craniotomy 3 years ago and the back of my head, where the huge scar is, hurts. As soon as it is touched or my head hits the head rest, or pillow, it hurts. I would ask the neurosurgeon about his pain. Last week I underwent Linear Accelerator treatment too. I have to say that they held your head in place and still, with a mask of your face they made. It was much easier to go through than the protons that is for sure, that includes the stereotactic frame.
I had the frame screwed to my head but I personally have had no adverse reactions to that. I truly hope he finds help in relieving that pain, because I am sure he is in enoughbalready. Good Luck.
I had the ‘halo’ screwed in when I had my radiosurgery. Initially I had pain from the site, as well as bleeding. This lasted only for about 6 months. Have had no problems since. The Trigenal Neuralgia is an interesting point though, as I get pain very similar to that.
We have our own Bens Friends forum.There are a few others here like me,the avm interfering with the trigeminol nerve.Hopefully you dont have it Maria.http://www.livingwithtn.org/
Hi elsa. Did try sending you a message but won’t allow it until we’re ‘friends’ i have sent a request. I have quite a lot of info so will let you know what we’ve been through and maybe help advise what’s ahead (although unknown for any of us!) where abouts are you in the uk?
Gary had radiosurgery 3 stage treatment for an 8cm avm located near the optic nerve. The treatments were 3 months apart and were all performed at the royal Hallamshire hospital in Sheffield, which we were sent to from Sussex. They are apparently the most experienced NHS hospital for this kind of treatment in the uk. And they were in fact the only hospital we have been to that we can’t really fault. The staff there are fantastic. And because the treatment is very rarely used you have staff there dedicated to you all day, which is rather reassuring during the scariness of it all.
Although these treatments are all that can be done for now they did predict that due to the size if his avm he will need further treatment 3 years after first treatment.
We have had many problems since the radiosurgery. He had gamma knife stereotactic.
If we could have foreseen the problems that radiosurgery would cause we do question whether it is the method we would have chosen.
I would seriously consider researching ‘cyber knife’ in the uk just google it. It isn’t used by every NHS district due to funding (sadly not ours) or if you can afford to go private then do it. The way it works is much more precise than the gamma knife .
This post could continue for a while!! I have a lot to day on the matter!!! Message me with any specifics you want. Or if you live close enough we could meet or could give me a call! We are in the minority so know it is good to discuss with someone else going through similar experiences
Kayleigh x x
Thanks. Is good to get a few other peoples experiences x
Thanks everyone. Have looked into the TN and it is an interesting theory. However Gary suffers on the back of his head and most people suffer this pain facially.
It is possible that one of the nerves was affected due to the radiosurgery or the avm itself. It’s something we can follow.
Thanks for letting us know that it isn’t normal to experience continuing pain with the pin points. You never know whether it’s just you or if it’s something that happens to everyone. And to be honest the doctors are clueless and seem to have no idea what or why these different symptoms occur, and certainly don’t appear to have information on whether these things happen to others (or are unwilling to share this!)
I appreciate you all taking the time to reply. would appreciate further comments still from anyone else.
Thanks again x x
As I'm reading this I am searching for my pin points in my scalp/forehead. For a long time, if I touched the one on the front left side I would feel a 'shock' about 2 to 3 inches away. I assumed the pin hit a nerve that expressed itself farher up my scalp. It appears to be gone at the moment but it has done so before and in a week or two I hit that point again. My Gamma Knife treatment was about 10 months ago and only one so far (hopefully). I think this is the same type of pain you have. Talk to your doctors about it, others people they have treated may have experienced the same thing. Hang in there.
i had radiosurgery 2 yrs ago (brainstem avm) and i get the same kind of "shock" feeling. Not around the site but on the back center of my head. they don't last long and aren't painful but they definately are bewildering/alarming. They don't last very long but when I've asked drs about them or if they've ever heard of something similar i am usually met with a blank stare...:/
are they frequent or painful for him??
Hope the best for your situation Please let me know if you learn anything new on these "shocks" and I will do the same
I had gamma knife surgery 25 years ago. I don’t have any unusual pains like Gary from the bolt holes. I hope you can find a doctor who will help you in this problem.
Thanks Armand. It is good to get a few replies so that we can get a wider view of everyone’s situations. It is something we will bring up when we see the neurosurgeon next month. Although he seems to have few answers to most questions so far! We are hoping to get referred to a different hospital the neurology hospital of London in the hope they might be able to help a little more!
Scott David Harris, we come upon this stare often! From every dr or surgeon we’ve come across! It gets a little frustrating hey?!
Your ‘shocks’ sound like the same things Gary gets as there are also several other points on the back of his head he gets this from, it is the same as yours in that it doesn’t last for long or overly painful is just as you say ‘alarming’.
We are hoping to see some new drs about his many problems, so hopefully they might have some answers to some of them, if we do get any further information we will indeed keep you updated, I’ve added you as a friend so I can find you easily in such instance!
Good luck finding answers and we wish you good health.
Kayleigh x x
Susan I've been experiencing pain, I'd say more discomfort, at the spot of my craniotomy also. Oddly enough it happened last night when I laid my head down on a pillow. Kinda freaked me. It's comforting to know this isn't a complication. I was hoping nothing was going wrong up there. Thanks so much for sharing!!