Feb 2019

Gamma Knife Stories. I asked people to share their experiences with Stereotactic radiosurgery and to explain the preparation, what the actual procedure was like, how long before the results were noticed and how long did the pain relief last. Here are some of the stories:

Art T: 1  Preparation:  They only applied a gel 1 hr before the procedure and it did nothing 2  the pain occurred  when the  nurse and  Dr. administered 4 needles of xylocaine/lidocaine to my forehead and back of skull –  barbaric supposedly this procedure has been modified.  Attaching the Halo device was a bit traumatizing considering I could feel all 4 screws being put into my skull and when they were tightened by a wrench key I felt pressure.  A quick CT was made and then a technician did some measurements and then I went into the radiation chamber. 

3 It was about 6 mths before I felt no pain and was pain free for approx 5 yrs before the “BEAST “returned and I had to go onto meds again

4 I was prepared to do it again (gamma knife\) but my Neurologist advised otherwise. 5. My meds of Gabapentin and Lamotrigine have me for the most part ok

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Jack M: I had suffered  pain in my right jaw since September 1998 which was diagnosed as TN an oral pathologist in December 1999.   My treatment involved Tegretol for 5 years which controlled the pain fairly well but I would suffer recurring pain flares ups every 6 weeks which lasted for one week and made even brushing my teeth very painful.  In 2006, the doctor switched me to Lyrica which gave me longer relief but I still experienced  flare-ups.

1. The only preparation that I can recall is on June 3 having a CAT scan and a MRI scan of my head. I also had a metal frame attached to my head with two screws into the surface of my forehead bone.  The area had been anesthetized and the screws were painless. The frame was necessary in order to improve the accuracy of the gamma ray bombardment on the trigeminal nerve.

2. During the gamma knife surgery, I had absolutely no pain. I experienced no headaches during or after the surgery.

3.  The following day in the morning I noticed that the TN pain had vanished completely from my face and jaw and I began an immediate withdrawal from all medication. In the next six months, I was pain-free. Sometimes when I slept on my right side, I would have a slight discomfort in my jaw that lasted 5-10 minutes but it did not occur very often.  I had no numbness or loss of sensation in my face. In my 18 month follow- up examination, I could report that I was completely pain-free.

4.   It has been almost 11 years since my gamma knife radiosurgery and during that time I  have enjoyed a pain-free condition thanks to this marvellous radiosurgery technology. It’s interesting that the nerve once every two years will still give me  a small jab in my jaw for a micro-second.  I surmise that it is giving me a subtle reminder that it is still there although it’s very much under control.

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Werner R: I had had a Gamma Knife procedure in 2013 in Sherbrooke, Quebec. In Quebec they asked all the normal health question and did another MRI. The day after, I was in the MRI machine with kind of a mesh helmet screwed into my head bones. That was the only thing that hurt. Even weeks later I could feel where the screws went in.

I came out of that machine and had no TN pain anymore. I cut the Carbamazepine two days later to zero. I know I was supposed to easy off slowly but I had no problems.

I think it was about three years later some pain came back in the form of having a feeling in my nose and lips like I’m outside at -40C first and some numbness in my left face. Then the electrocuting pains were coming back and increased and increased. So did the dosage of Carbamazepine.

I went back to Quebec in June of 2017.  The doctor said he won’t risk an other procedure as my symptoms are not strong enough yet, Hahaha. I was over 2000mg Carbamazepine already. But he said the side effects of a repeat Gamma Knife could be worse than what I had.

Last summer 2018 I was over 3400mg of Carbamazepine and was almost on my knees and asked to be referred to Dr. Kaufmann in Winnipeg. My GP would not make the referral. Then early September I jumped off a deck at my neighbours house to break up a dog fight. The next morning I woke up and had almost no pain. ??? Since then I get away with about 800mg Carbamazepine, with the occasional 1000mg. I can feel it coming.