Good afternoon, all.
I am two weeks out from Cyber-Knife and am feeling worse than prior to the procedure.
I had Gamma-Knife in October, with a few weeks of relief. Then, my pain came back with fury.
After much deliberation, my neurologist and I decided to re-do the procedure; I elected Cyber over Gamma, as I had a hard time healing from the halo they used.
I was wondering if anyone out there has:
a. had both procedures done within a 6 month window?
b. is your constant pain worse than before the procedure?
c. did you ultimately gain any relief from the constant, burning pain, which I am experiencing now?
d. did you break-out in cold sores and have weird areas on the tongue that seem to be raw/exposed and particularly sensitive?
Additionally, they have added Dilantin to my litany of meds, but it has not helped at all.
I am looking for support, but more than that, the cold, hard truth. I need to know if there is a light at the end of the tunnel, here.
Considering the MVD now, but am told it will NOT help with the pain I am experiencing.
I would so appreciate any feedback or guidance,
I haven't had any of those procedures done. Just wanted to encourage you that you are not alone. I am sure someone much more knowledgeable than I will have something to say :-) Look for a blessing you don't expect today~~
Thank you for the kind words. I hope you are feeling good today.
I've talked with any number of patients who have had Gamma Knife or Cyber Knife over the past 17 years, though I am not myself a TN patient. For whatever this is worth, I would personally want to see these procedures discouraged for TN patients. They have a role in otherwise inoperable brain tumors or AVMs, and for patients who have health conditions that may make an open skull procedure dangerous. But Gamma Knife typically produces pain relief for about 70-85% of typical TN patients, with at least 50% of them experiencing a recurrence of pain within three years. Stats aren't as good for ATN patients.
I've heard of double-procedures such as yours, and they do sometimes work on the second throw of the dice. With Type II TN, a lot of neurologists and neurosurgeons are not enthusiastic for either procedure. The outbreak of cold sores in your mouth should be investigated promptly. In combination with a background of constant burning pain, that symptom may be an indicator for Post Herpetic Neuralgia associated with Shingles.
I do not intend this input to be either cold or hard, Christine. But hopefully it is accurate.
I wish you wellness
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Thank you for the information. I was not thrilled about having Cyber Knife so soon after the Gamma procedure.
I was, however, suffering immense pain episodes and thought it was the least invasive next step.
I am seeing my primary care doc today to see if they can help me with the outbreak of sores in and around my mouth.
I realize that stress can cause things to pop-up, but didn't expect to experience so much pain and negative side-effects from the radiation.
The MVD is still an option, but they are telling me it will NOT help with my constant pain; that it is geared toward the electrical episodes that occur still, but less often.
I guess all I can do is wait for some relief, continue on the nerve meds, and hope for the best.
If you have any suggestions or think of anything else I should consider, please let me know.
I HAD CYBER KNIFE IN MARCH OF THIS YEAR FOR ACOUSTIC NUEROMA ALL OK EXCEPT FOR VERY TIRED THEN ON GOOD FRIDAY STARTED GETTING ELECTRIC SHOCK FEELING THRO MY FACE SO BAD COULDN'T COMB HAIR PUT MAKE ON OR EAT WITHOUTCHRONIC PAIN EVEN HURT WHEN WALKING. IT IS NOW NOVEMBER PAIN IS STILL VERY BAD ONLY GETTING RELIEF ON A SMALL SCALE BECAUSE I AM TAKING THREE ANTI DEPRESENT I THIN THWEY ARE CALLED [AMITRITALINE] CONSULTANT SAID THIS IS UNUSAL WOULD LIKE TO KNOW IF ANYONE ELSE HAS EXPERIENCED THIS ALL I KEEP GETTING TOLD IS GO TO A PAIN CLINIC OR MAYBE AN OPERATION WHICH I WAS TOLD CYBER KNIFE WOULD DO AWAY WITH THIS OPTION. DOES ANYONE KNOW HOW LONG THIS WILL LAST FOR IF I TRY TO CUT DOWN ON PILLS PAIN COMES BACK SO VERY BAD.AN Y HELP WOULD BE APPRECIATED
Annie, it sounds like you were one of the unlucky ones. And I don't mean this to trivialize your pain at all. I know it's very hard on you. About 50% of all Gamma Knife and Cyber Knife patients who receive the procedure for trigeminal pain, have pain recurrence within three years. On the order of 10-20% of those patients get no relief from radio surgery of this type on the first try. There is also a life time limit of two uses for either of the procedures, due to radiation damage concerns. See my comments earlier in the thread.
You guys can go to the "groups" tab above -- there is a cyber/gamma knife group there with many stories to read, or join it and post questions !