Has anyone here had the Cyberknife procedure? I’ve already had the MVD almost 2 years ago and now we’re trying another, newer, procedure. Just looking for any feedback. Thanks.
I believe it’s the same as Gamma Knife if i’m accurate. I fear if MVD didn’t help… Gamma may not be your answer… it is not permanent the studies show only about a 5yr remission but maybe that is better than nothing. I had it done. Make sure you vet it out well. Not necessarily the equipment but the doc… and insist and I mean insist on light sedation when they fit the frame… it was horrible and terrifying to only get a local and then have it screwed into my skull - and there is no reason they can’t… you have an IV for anti-biotics and doc and nurse fit it… so there is no excuse to “snow” you with some valium so you don’t care… just my 2 cents
Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
Good to know this is something I am not aware of… I will have to read up on it… but don’t want to jinx my MVD after 7 procedures on my TN plus multiple meds… I am praying that the MVD will do it… and I don’t have to go to the most extreme fix - of severing the nerve
thanks much
jan
Hi had the MVD with minmal results after a year. then I had the gammaknife procedure on both sides, (I have bilateral TN). After one year I ended up with neurapthy across my whole face area. The area the a surgeons’ facial mask would cover, plus my tongue. This all happened between 2001 and 2004. After that I started presented more symtpoms of MS unknowingly. I hesitantly visited other Drs. like OB/GYN, Urologist, othopedics, Gastroenterologist. And today i learn that I have lesions on my MRI that I did not have 2-3 years ago, and all of that tingling and weakness was possible due to MS. So I said all of this to say that ths GAMMAKNIF EPROCEDURE was not so terrible considering the outcome i was looking forward to. My new DR. thinks the TN procedures did not work as expected because I should have been treated for MS long ago as well as TN.
Stay positve regarding the outcome of your GAMMAKNIFE procedure. Don’t let the screws to your head scare you. They will only leave a little scab for a short time afterwards. Well worth it if you are relieved of your TN pain. I also suggest that you feel comfortable with the staff woking with the Drs. as well as the DRs. doing the procedure. Ask the to inform you of every thing they are doing as they procede. This help to alleviate fear of the unknown.
I’m am still looking for personal details about lumbar punctures. i will need to have one to confirm this MS diagnosis.
thanks to you all. STAY STRONG.
I thought I’d add an inquiry to this discussion to get an update on anyone that has had the CYBER KNIFE or GAMMA KNIFE procedure. Are they one in the same? There seems to be some confusion. Has anyone had any success? Heard of the possible complications? I am thinking that MVD would not be an option for me due to no compression of the nerve on the MRI. I have yet to go to the neuro to talk seriously about surgical options but it is something I plan upon in the coming months.
Hi LisaMarie. I did have the CyberKnife procedure which was not surgery at all. It was a simple one hour radiation treatment which has possible side effects of some minor to severe numbness in parts of the face. Fortunately for me, I had no numbness at all. Unfortunately for me, the treatment did not cure me of my pain. However, something to keep in mind is that there is a high effective rate for this procedure, and I have an atypical case of TN. I didn’t have the standard issue type where the artery was pressing against the nerve; I had a case where I had veins wrapped around the nerve. This was the case for years, possibly my entire life, so the damage to the nerve may be different. The Gamma Knife, as I wrote above, is much more of a surgical procedure. This one had no pain and, if it’s something you’re considering, I’d say give it a shot. There is a large success rate and a small chance of numbness. Good luck with whatever you decide. If you have any specific questions, feel free to ask, but write me directly instead of on this thread since I haven’t logged in for a long time. 
i dont know about cyber knife but i just did have the mvd i would like some answers if you could help me out.why did you have no releif from the surgery and how many nerves did you have padded. did you get any relief at all in the beginning?I had 2 nerves that were around the artery and padded and came out now 6 weeks later with numbness on half my face. They told me it was rare to happen and might come back 4-6 mths. You get used to eating on 1 side and drops all the time in my eye since i cant feel anything inside it. any help would be great. thank you and sorry to hear about your problem and i hope this is not something to look forward too.
Sorry to hear about the numbness. It’s a possible side effect and I’ve been thankful that I haven’t experienced any of it. I had the MVD in April of 2007. I have had some relief. I also, however, didn’t have the standard TN. I had veins wrapped around the nerve. The veins were cut away and there was no reason for padding. However, there is a chance that they’ve grown back. As for the CyberKnife procedure, I had very high hopes for positive results from that. My doctors have had a high percentage of success with it, but there are always the ones that it doesn’t work for, which is the category I apparently fall into. I have heard that sometimes numbness does come back. I did have a good amount of numbness in my mouth, specifically my tongue, after my MVD. I don’t remember how long it lasted (quite a few months), but it did eventually fade. Good luck with everything. I try to look at it this way: my sister was diagnosed with breast cancer just before her 31st birthday…and however bad this is, it’s still better than that. Sometimes, that’s what keeps me going. Feel free to ask any more questions if you want to. In the meantime, I hope the numbness does fade and you start to feel some relief soon.
Debbie Burns said:
i dont know about cyber knife but i just did have the mvd i would like some answers if you could help me out.why did you have no releif from the surgery and how many nerves did you have padded. did you get any relief at all in the beginning?I had 2 nerves that were around the artery and padded and came out now 6 weeks later with numbness on half my face. They told me it was rare to happen and might come back 4-6 mths. You get used to eating on 1 side and drops all the time in my eye since i cant feel anything inside it. any help would be great. thank you and sorry to hear about your problem and i hope this is not something to look forward too.
Thanks Ro. And great job on the site. Keep up the good work!
Ro~ said:
Not to go way off topic but gosh Debbie, I had no idea what you went through.
And Lauren, sending my best with hopes the best resolution comes your way.
Debbie Burns said:i dont know about cyber knife but i just did have the mvd i would like some answers if you could help me out.why did you have no releif from the surgery and how many nerves did you have padded. did you get any relief at all in the beginning?I had 2 nerves that were around the artery and padded and came out now 6 weeks later with numbness on half my face. They told me it was rare to happen and might come back 4-6 mths. You get used to eating on 1 side and drops all the time in my eye since i cant feel anything inside it. any help would be great. thank you and sorry to hear about your problem and i hope this is not something to look forward too.
Lauren said:
Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
CYBERKNIFE IS A MIRACLE! IT IS THE BEST KEPT SECRET OUT THERE FOR TN!
Sonny Scyphers said:
CYBERKNIFE IS A MIRACLE! IT IS THE BEST KEPT SECRET OUT THERE FOR TN!
Lauren said:
Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
missy said:
Lauren said:Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
I was just wondering if your Cyberknifer treatment was successful? I have been diagnosed with ATN and was treated in September but have not seen much improvement??
Thanks,
Missy
missy said:
missy said:Lauren said:Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
Hi Missy.
Unfortunately for me, no, there was no improvement. However, we had to give it a try. We’re looking at two other surgical options right now, both of which are in-and-out same day surgeries, so they’re nothing compared to the MVD.
Best of luck. Give it a full 6 months before you give up hope. It really could take that long.
Lauren
missy said:
I was just wondering if your Cyberknifer treatment was successful? I have been diagnosed with ATN and was treated in September but have not seen much improvement??
Thanks,
Missy
missy said:missy said:Lauren said:Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
hi my name is Denise I am ■■■■■■■■■■■■■■■■■■
I had the cyber knife about 4 weeks ago. I would say my mouth is about 70 % percent better. I m still on some meds. I did have brain swelling and was put on steroids. Has problems with the steroids. Yes it just mask no screws in your head. It tool only about 1/2 hr. Only thing is I am really tired I just started feeling better and got sick again.
I hope it not from the radiation. I will keep you posted. It is so nice to not have the pain like I did. I am just hoping
I will feel better. I will keep you posted just email me again. I am not to computer savy.
Lauren,
Thanks for the information. I just went to my Dr. this morning for a follow up visit and he also said to give it 6 months. Would you mind telling me the other surgeries that you are thinking about?
Thanks,
Missy
Lauren said:
Hi Missy.
Unfortunately for me, no, there was no improvement. However, we had to give it a try. We’re looking at two other surgical options right now, both of which are in-and-out same day surgeries, so they’re nothing compared to the MVD.
Best of luck. Give it a full 6 months before you give up hope. It really could take that long.
Lauren
missy said:I was just wondering if your Cyberknifer treatment was successful? I have been diagnosed with ATN and was treated in September but have not seen much improvement??
Thanks,
Missy
missy said:missy said:Lauren said:Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
My doctor is a very well known TN neurosurgeon and he has come up with some options for me, one of which is a little out of the ordinary. One is the very common balloon procedure, where he inserts a balloon into the nerve, inflates it, damaging the nerve in hopes that the pain signal will no longer exist. This is typically not a permanent fix as the nerve most often repairs itself, it’s just a matter of how much time you get. I may not be explaining it exactly as it’s done, but that’s pretty much it in a nutshell (and I believe they go through a hole in that is made in your mouth, so no outside scarring).
The second option is subcutaneous peripheral nerve stimulation (or something like that). An electrode is inserted under the skin and connected to a battery pack (typically installed somewhere in the chest cavity). The electrode delivers electric signals to the nerve thereby disrupting the normal pain signal that would normally be sent to the brain. The good thing about this option is that we can do a trial by inserting the electrodes partially and keeping the battery pack outside the body (I’d carry it around in a pocket). I’d know within a short time whether or not this will work.
As someone who has already gone through an MVD and the CyberKnife, I’m taking my time deciding this. Also more recently, I’ve started to have bilateral pain. The second option I described above can take of both sides at the same time. The balloon procedure would require 2-3 months between surgeries for each side of my head. I’m definitely leaning towards the electrode option, but I haven’t made a decision yet.
I hope this was informative. Good luck with everything.
Lauren
missy said:
Lauren,
Thanks for the information. I just went to my Dr. this morning for a follow up visit and he also said to give it 6 months. Would you mind telling me the other surgeries that you are thinking about?
Thanks,
Missy
Lauren said:Hi Missy.
Unfortunately for me, no, there was no improvement. However, we had to give it a try. We’re looking at two other surgical options right now, both of which are in-and-out same day surgeries, so they’re nothing compared to the MVD.
Best of luck. Give it a full 6 months before you give up hope. It really could take that long.
Lauren
missy said:I was just wondering if your Cyberknifer treatment was successful? I have been diagnosed with ATN and was treated in September but have not seen much improvement??
Thanks,
Missy
missy said:missy said:Lauren said:Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.