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Living With Facial Pain

CyberKnife for Trigeminal Neuralgia

#1

A little over a year ago, I had cyberknife surgery for my trigeminal neuralgia. Amazing experience with my doctor a neurointerventionalist surgeon and a radiation doctor guiding radiation to a tiny exact spot. It took several months but I went from severe attacks - little by little until in 9 months I had no more pain - none at all. And, in truth, the pain I did have was only a twinge - sort of threatening an attack, but after the radiation, I never had another attack! My doctor thought it the best approach as it had the least possibility of causing facial numbness. And best of all - if it were to ever come back - we can do it again!

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#2

Hi, I am guessing this is the same as gamma knife? I am requesting an opinion on this being my next treatment. Meds are not effective or I can’t cope with the side effects when meds increased. I am pleased this worked for you and good to hear it has been successful

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#3

Before the cyberknife treatment did you have a rhizotomy or anything else to help with your pain? I started with meds (Tegretol, Baclofen, Gabapentin, Lyrica) all of which became ineffective. Finally discovered a brain tumor putting pressure on the trigeminal nerve so had that removed. Pain was back 3 months after surgery. (Meckel’s Cavity was involved and NS said sometimes when that’s involved the pain does come back.) I’ve had 5 rhizotomies since then, but they only seem to last about a year and then the pain is back. I have so much numbness on the side of my face with the TN and each rhizotomy seems to be harder to recover from so I’m truly dreading yet another one. Wondering if the radiation would be a better alternative for me.

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#4

After trying several medications whose side effects were intolerable, I was on Gabapentin (2700 mg daily). I was also taking Valtrex (valacyclovir) as there is some evidence that there may be a connection between TN and Shingles. I had not had any surgeries or procedures. Out of all the options, my doctor thought this one was the best option for me. He was right!

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#5

At what hospital did you have this done? I might be interested in trying to get in there.

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#6

Just curious how long did you had the nerve pain before you opted for the surgery? I have terrible front tooth pain (from an old baseball injury) on and off for the past year and a half, gabapentin 900 to 1200 mg a day plus nortriptalyne 900mg a day and side effects are brutal. The pain is typically managed with meds as long as I don’t bite into something wrong way. I just want off meds for good! My doctors think the pain will settle but not sure when. It’s so frustrating. I’m also considering CBT oil.

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#7

I had a Gamma Knife which worked for 6 years. It also left my TN side of my face very actively numb. A throbbing constant pressure. I wouldn’t wish this on anyone. I later had an MVD and it worked great with no side-effects. Been pain free for 8 years.

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#8

I had gamma knife (like cyberknife: the full name is stereotactic radial surgery) for the first time in 1997 at Northwest Hospital in Seattle. This was recommended after a 10-year struggle to diagnose it (1982-1992), and 5 years of multiple medications (esp. Tegretol, which worked but had dreadful side effects) and 2 failed rhizotomy attempts. I was painfree immediately after the gamma knife procedure, and remained painfree for 5 years. When TN1 returned in 2003, I had a second gamma knife procedure at Barnes Jewish Hospital in St. Louis, and had equally great results for another five years. No pain, no numbness. In 2008, the neurosurgeon at Barnes did it again, with more great results. In 2012, when TN1 returned, he refused another gamma knife procedure, and recommended MVD. which he performed in June 2013. I have been painfree since then.

Another neurologist told me that gamma knife works only for 10% of patients, but it certainly worked well for me (in two different locations, two different neurosurgeons). I seem to recall that cyberknife is less effective than gamma knife, but am not sure of the source. I am not sure what the difference is between the two machines, but I have been told there is a significant difference.

As most of us know, opioids and other painkillers do not even begin to work for TN pain. What is required is medication that mutes the entire nervous system (e.g., Tegretol, gabapentin). If that can be tolerated,and if it works, medication may be preferable to surgery, but I found medication had too many side effects and wrecked my work and home life. I am so very glad to be off medication and to be painfree since 2013.

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#9

Hi, My name is Rick and I had Gamma Knife Surgery (Cyber) in New York City last June…the pain is somewhat less but I’ll probably go for a 2nd procedure. My symptom is GPN…Great to hear you had such good results of your 1st procedure

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#10

Just an update on my Mom’s condition…it has been almost 4 years since she had the Cyberknife treatment and had been pain free for all of them. She very occasionally experiences some mild “activity or flashes”, but then it disappears. These usually happen when there is a lot of wind. She has had dental work done with no impact to that area or the nerve. She still takes the one trileptal pill 150mg, just as a precaution, she is scared to get off totally, but I think she could. Just thought I would pass on info, know a lot of people out there are looking for hope, as we did. We are grateful for the support group during our trials and that we found the right treatment. We sincerely hope everyone finds the relief they are searching for…

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#11

Tough Cookie – so good to hear your mom’s success story!

I wanted to mention that the very low dose of Trileptal may be doing more than you think. I was in same spot with chronic migraines, through trial and error and various therapies I had dropped my prescription daily medication to a teeny-tiny dose of 1 tablet of the lowest available dose and had been doing great for three or four years. So, much like you, I started thinking I could go off it completely, the dose was so low it was like taking nothing anyway, right?

WRONG.

I went off the medications and launched myself into a tailspin. It took about six months and a much higher dose to get myself stablized again. Then I had to maintain the higher dose for well over a year before getting back to were I was on the teeny-tiny dose.

An ounce of preventation is worth a pound of cure. Leaving well enough alone may be the best thing you (and your mom) can do.

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