I had gamma knife in september and if anyone is looking for answers on the procedure or have any questions about it - I would be happy to discuss. Over all - I am happy I did it.
So pleased it went well for you Jeanine, Albee on this site also had it done recently he may like to hear from you and he had some questions recently.
I would be happy to talk to him - I don't know how to talk to a particular person though, how do I do that???
Elstep, you can enter a user name on the "Members" page in our site menus above, and look them up. Then send a friend request if you would like to chat by site email.
Regards, Red.
Hey Jeanie - did you have any side affects directly after the procedure?
I had horrible nausea + dizziness/vertigo, it took nearly 2.5 weeks to overcome. The holes from the halo healed up well and I get achy there from time to time, but that is fine. I did learn that I prefer intense pain to massive chronic vertigo :)
It has been 25 days and no sign of pain reduction, but I remain optimistic.
please share your experience.
It is frequently the case that when Gamma Knife works, it may require six weeks to six months to stabilize into whatever degree of pain relief it will ultimately produce. So give it time, Albee...
Regards, Red
Thanks Red, cannot say enough great things about the feeling that I can do this just knowing you and the gang are out there.
Richard A. "Red" Lawhern said:
It is frequently the case that when Gamma Knife works, it may require six weeks to six months to stabilize into whatever degree of pain relief it will ultimately produce. So give it time, Albee...
Regards, Red
Albee
I am sorry you had that - I did not have any nausea or vertigo or anything like that. I did have swelling in my face for several days - actually almost a week, but that was about it. I did not see any difference in my pain level for at least 2 months - and I was getting really depressed and thinking it was not going to work for me. But then I started to notice a decrease - especially in any shooting types of pain and then I started to wean off my Tegretol. I was on 800mg a day and went down to 600 at that point, then a few weeks later I had horrible shooting pains - almost worse than anything I have had before and I thought for sure that it did not work - that episode lasted only an hour or two and then it was gone and I have not had another shooting pain since. I weaned all the way off the Tegretol just about 2 weeks ago. In the last week or so I have started to have a dull toothache kind of feeling and I am back on 200mg a day and do not want to go up any more. So far, I am controlled on that and able to deal with my pain completely. I really want to be drug free and am hoping I can go off again and that this will last a few years, because if it does, I would do it again. I am scared of the brain surgery, but know it is probably in my future, but if I can do gamma knife again to keep that from happening for a while - I would.
I know it is so hard to be patient, but I hope that your pain decreases like mine did because this sucks to live with and no one understands how much unless you deal with it yourself!!
Cara
I had it done at Alexian Brothers Hospital - I live near Chicago - it is a hospital in the suburbs of Chicago. My doctors were awesome - if you want their names, I can get them to you.
As far as pain goes, hmmmm - well it was not the least pain free thing I have ever done that is for sure, but it wasn't that bad - it was more very weird than painful. The worst part is getting the halo put on your head - they numb the pin sites and that is not so bad - getting it on is a weird experience and there is a lot of pressure, but not so much pain. They gave me a good relaxing drug and the MRI that I had right after the halo was on was actually cool, because the drugs with the noises of the MRI machine made me have colorful visions etc. during the whole thing:) Once the drugs wore off and they did the actual procedure, that was a little uncomfortable because the halo on your head is attached in the machine and the numbing stuff started to wear off and by the end I couldn't wait to get it off my head. I could send you a pic of the halo on my head if you want to see it - it is a lot scarier looking than the whole thing was. But - I got to the hospital at 6:30am and was home on the couch by 10:30am. The worst part afterward is the swelling you get in your face for the next few days - that was a lot worse than I expected. I would go through it again because it has helped me tremendously!! Hope that helps and I am happy to answer any other questions you have.
Cara said:
Can i ask where you had this done? I am currently researching this procedure for myself. I know little about it and wanted to find out more before i brought it up to my dr at my next visit. And was it painful? My dr told me the nerve block was going to be a pinch.... Ummmm... It was more than a pinch. I had it done at the pain clinic....When i saw him again he was joking saying if he told me it was painful, i wouldnt have proceeded with it. Point taken. Lol
jeanine said:Albee
I am sorry you had that - I did not have any nausea or vertigo or anything like that. I did have swelling in my face for several days - actually almost a week, but that was about it. I did not see any difference in my pain level for at least 2 months - and I was getting really depressed and thinking it was not going to work for me. But then I started to notice a decrease - especially in any shooting types of pain and then I started to wean off my Tegretol. I was on 800mg a day and went down to 600 at that point, then a few weeks later I had horrible shooting pains - almost worse than anything I have had before and I thought for sure that it did not work - that episode lasted only an hour or two and then it was gone and I have not had another shooting pain since. I weaned all the way off the Tegretol just about 2 weeks ago. In the last week or so I have started to have a dull toothache kind of feeling and I am back on 200mg a day and do not want to go up any more. So far, I am controlled on that and able to deal with my pain completely. I really want to be drug free and am hoping I can go off again and that this will last a few years, because if it does, I would do it again. I am scared of the brain surgery, but know it is probably in my future, but if I can do gamma knife again to keep that from happening for a while - I would.
I know it is so hard to be patient, but I hope that your pain decreases like mine did because this sucks to live with and no one understands how much unless you deal with it yourself!!
Cara -- i'm on the road and away from my archives at home right now. But remind me if I forget next week, to send you the practice standard published by the International Association for Radio Surgery, on Gamma Knife and Cyber Knife...
Regards, Red
Cara said:
Can i ask where you had this done? I am currently researching this procedure for myself. I know little about it and wanted to find out more before i brought it up to my dr at my next visit. And was it painful? My dr told me the nerve block was going to be a pinch.... Ummmm... It was more than a pinch. I had it done at the pain clinic....When i saw him again he was joking saying if he told me it was painful, i wouldnt have proceeded with it. Point taken. Lol
Hi Cara, I had mine done at Washington Hospital Center in DC (I live 25min away in Maryland). Here is a link to find one near you:
http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife.html
Could those of you who had Gamma Knife done tell us which nerve/ganglion it was done on? It can be done on a few different places for TN/ATN/TNP, and it would be helpful to know which are more successful. Thanks!
Hi Albee, did you feel any better now?
Crystal, They have to target where the blood vessel is. They did a ct before they put the halo on me. Also why they do the cat scans and mri's after they put the halo on, so that they can get a correct mapping to zap that blood vessel with the gamma radiation.. My cancer Doctor specialist told me after, that they probably zapped some of my tri nerve too... as it was pretty close to the nerve.... Min
Crystal
I am not sure what the differences are in the success rates of the different types. I have symptoms of both TN and ATN so I don't know that it was ever 100% decided that I have either one. I do know that the success rates given to me were pretty high which was one of the reasons I chose to try it - I did not see much down side to giving it a try before a larger surgery. Although the success rates given are always for reduction in medication - not coming off medication completely - so a success is considered reduction in medication in everything I researched. I don't know if that helps you much.
It can be done on sympathetic nerves or sensory nerves. That's why I asked.
Jeanie, thank you for posting this. I'm considering this because the gabapintin dose is so high I'm goofy most of the time. I am lined up for it at UVA when I'm tired of trying to get pain free from meds. This gives me mixed hope. Did you have any memory loss or confusion?
According to the International Radio Surgery Association, success rate for Gamma Knife in Typical TN is on the order of 70-80%. While statistics are not as readily available for ATN, the trend is toward 50/50 or lower initial success. Again for typical TN 50% of all those successfully operated on will have pain recurrence within three years. If you have symptoms of both TN and ATN, and there are evident vascular compressions of the nerve visible in MRI, then you may find that both Gamma Knife and other surgical procedures may be more successful against the TN component of your pain. Many neurosurgeons won't attempt MVD or the Rhizotomies at all, if your symptoms are dominated by the ATN component.
If you would like to read the practice standard on Gamma Knife and Cyber Knife, please send me email at ■■■■■■■■■■■■■■■■■■■, and I will send the document. I cannot publish it here as it is copyrighted, and I haven't found it available online.
Regards and Best
Red
Deborah said:
Jeanie, thank you for posting this. I'm considering this because the gabapintin dose is so high I'm goofy most of the time. I am lined up for it at UVA when I'm tired of trying to get pain free from meds. This gives me mixed hope. Did you have any memory loss or confusion?
Deborah,
I was very "dumb" as I called it on 800mg of Tegretol, which is what I was on to control my pain. I felt stupid and forgetful and like I shouldn't be driving at times. I was tired, lazy etc. - I am sure you know how that is. I had to try something else and did not want to have the surgery. I am very happy I did it, I did go off my meds completely, but only for a short time, unfortunately. I am back on 200mg - but at least I can function without being goofy! I have not had any problems from the gamma knife - no memory loss or confusion or anything like that. If you have any other questions - I'd be happy to try to answer them.
Deborah said:
Jeanie, thank you for posting this. I'm considering this because the gabapintin dose is so high I'm goofy most of the time. I am lined up for it at UVA when I'm tired of trying to get pain free from meds. This gives me mixed hope. Did you have any memory loss or confusion?