Hello everyone 
!
I am a long time reader of all the great info here and greateful for it. After a long run on various meds of the mind-numbing anticonvulsant variety, I’ve decided to accept the advice of a few docs and go for the Cyber Knife. I understand the newer machines are a bit better with regard to side effects. I am hoping for the best… fewer (even none if possible) ice picks, electric zaps, hatchets, scrapes, burning boot heels, etc… I will share my experience in the coming months. Procedure is scheduled for 8/1. Any tips you may share for the procedure or afterward would be much appreciated!
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Dear OKLEINPAIN,
is this for GN Glossopharyngeal Neuralgia?
Hi, sorry I did not specify. This is for Trigeminal Neuralgia. Atypical variety. I’ve been suspect of MS as well, but MRI doesn’t show the typical lesions associated with it. I had a brain surgery in 2012 for another issue, after which all the facial pain began, so there’s been mention of that having impact on the TN.
I was diagnosed with TN in 1999. I went through the usual pharmacological treatments followed by MVD and then Cyberknife.
Finally relief. No more pain of any kind for years and years and years .
Believe in your surgeon; follow your surgeon’s instructions; follow up with your neurologist and bask in the amazing results. I will pray for you for the very best results possible.
It can be a miracle.
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Good luck! I’ve had two gamma knife treatments for atypical trigeminal neuralgia. So if the first treatment doesn’t work, don’t be afraid to try again (after six months). Advice: Make sure to get enough local numbing agent at pin sites (where the metal cage is attached to your head). Other advice: Don’t be afraid to ask for something to keep you calm during your gamma knife treatment (mine lasted an hour each time; takes place in an MRI type tube). Lastly, remember that results may take up to six months to occur.
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Wow, no pain for you for years, that is terrific! Thanks for your kind reply.
Thank you… and thanks for the tips regarding the cage and procedure!
Dear patient.
Cyberknife is a kind of destruction of nervous tissue, primarily pain-carrying structures. These destructive methods are not affected Yes pathological focus and his prescription to the structure, whence arises pain.
Destructive methods, including Cyber knife, are only symptomatic treatment, but not pathogenetic.
We have discovered the important role of intraosseous receptors of facial skull bones in the pathogenesis of facial pain. Based on the osteogenic theory of facial pain, we have developed a method of intraosseous blockades in the zygomatic bone and lower jaw and apply it in patients with facial pain with pronounced therapeutic effect. My firm belief before proceeding to surgical treatment of facial pain, it is necessary to undergo a course of intraosseous blockades which in most cases relieves the patient of pain and the need for surgical treatment. Prof. Evgeny Sokov www.pain-clinic.ru
I had it done, and the results were great. I do still have to take medications, and the results took a long time coming! Anyway, it was a good thing to do. TN happened to me in 2009, the year I also had the MVD operation for it. In 2014, I had the gamma knife procedure. While helpful, I really noticed another change in my condition three later after a year of botox treatments for migraine headaches, which I had before TN. Here it is 2019, and I have been enjoying a pretty normal life for a solid year. Oh, and it helped to grow my hair longer so that it keeps my face warmer.
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Amazing, thanks for sharing your experience!
HI, I had Gamma knife surgery and my results are great. I was in pain for almost 2 years. I was on gabapentin and Tegritol. was taking more than the prescribed and still had so much pain i was in bed most of the day. lost my job and then went ti a nuro doctor. I chose this surgery because it was the least invasive and could be done a minimum of 2 times within a year. i only needed it one time.
It is scary procedure but it is not if you know what you are in for. First do one thing. bring a friend with you. i was amazed at the process… it was so cool.
They screw a halo to your head. really… 4 places. i was sitting and they came in with a vice for my head. they line it up with your ears and 2 or more people screw these pins into your head… you are drugged so your just thinking wow… this is weird…
they gave me a cookie… more drugs and thats the last thing i remember.
apparently i got a MRI, and a CAT scan. they are paired together and then the medical staff use the pictures to locate the interference with the nerve and artery. The Nerve is sapped and thats it…
The doctor said to stop the meds that day. However, when doing so the pain was stull there. I then decided to titrate off of the pills, it took a month. im still pain free and its been 5 years. please dont search for the why of the pain… just live, free of pain once its gone. i have heard that it can be a precursor for MS but no problem here.
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Awesome, so glad to hear this worked for you and still is working. Thanks for the tips!
As you can see, there is choice.
I was lucky. The inventor of the Cyberknife was my surgeon. He, too, told me to throw away my meds on the day he performed my last Cyberknife. I immediately gained 17 lbs. my neurologist, Dr. Susan R. Hansen told me to continue using Topirimate. Weight loss continued. It’s a side effect of Topirimate(Topamax). Gotta love that drug.
As you can tell from all the great support, each person has a slightly different experience. Did anyone tell you that they would not do it again?
No. Did anyone discourage you from going forward? No.
I’m am over the moon glad I went forward and may be the best possible result. But all of us appear to be flyweight did.
- We advise you take an advocate with you
- You take your Health Directive with you.
- You take your Medical Power of Attorney with you.
- You alert your POA that you are doing this and ask for the phone number that he can easily be reached at.
Trust your surgeon and communicate with their team