Canadian Trigeminal Neuralgia Association

CaTNA News and Stories

If you have a news item or if you have a story to share, please send it to help@catna2.ca.  In some instances it is possible to contact the person who submitted that item and in those cases a link will be provided.

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 releif 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.

My family doctor is now willing to refer me to Winnipeg but I need to wait until after the winter because it is very difficult to find a house sitter to look after my home here in the Yukon.

Jan 2019: Terry from Calgary

I tried the medicinal cannabis for approximately six weeks. It did nothing for me at all. I’m the one with type B or whatever they categorize it. ( the constant tingling or twitching) The carbamazepine seems to keep it under control and it’s not as bad as it was in the beginning.

Nov 2018 – DYI Acupuncture Experience

This story comes from Rene who lives in Quebec: At first I thought my teeth were causing the pain and the dentist never said what he knew was happening. So ago I went to see a chinese practioner who had a pile of degrees. He did acupuncture and then after several treatments I decided to do the accupuncture myself. A medium sharp object to the side of the middle finger near the tip. Anybody interested I can give more instructions. IT WORKED FOR ME.

November 2018 – Nerve Block Injection

I have been going to Dr. James C Brown MD Anesthesiologist at “The Interventional Pain Specialists “ in Richmond Hill ON for Trigeminal Nerve Block injections for several years. I need to go about every 6 months from my home here in Sault Ste. Marie, ON…a 9 hr drive. Dr. Brown uses a local anesthetic first and then injects while visualizing the area with fluoroscopy. The feeling of numbness disappears within 24 hrs. I have been able to control the pain with CBD cannabis oil daily and the injections for the past two years without Tegretol or Gabapentin. After 6 months I notice the pain increasing in severity again. Dr. Brown tells me that he is not always as successful with TN patients as he is with me. I have “atypical” TN according to Dr.A. Kaufmann in 2010 .Dr. Kaufmann advised me against surgery. Dr Brown is willing to see other TN patients..his ph # is 905-237-4623 fax 905-237-5098. A physician referral is required. OHIP covers all the costs and I apply for a northern travel grant.

November 2018 – MVD Success

This year marks the 15th year anniversary since I had a successful MVD in Winnipeg.  Since then I have had no pain and no drugs.  Life is good.

To honor this anniversary and recognize others who have had successful MVDs, we had a “tea party” at the last Calgary TN support group meeting.  There were 7 people who had MVDs representing 53 years without TN pain.

Contact Jan

October 2018 – Nerve Block Procedure

Dear Fellow TN Sufferers,

      I recently discovered an valuable resource in Calgary. Dr. Jarvis is a neurologist with a MS interest, and operates a clinic at 16th St and 17 Ave. S.W.. He has learned a new nerve block procedure for TN patients. I believe he is the only physician in Calgary using the procedure. It is quick, painless, and administered by a doctor with a terrific bedside manner. 

      Over the years I have had nine or ten percutaneous rhizotomies, and therefore feel qualified to comment on a tool that provides relief from TN.

Ken,  Kelowna      email Ken

Other Stories – CSF Leaks after MVD

Francis from Calgary had an MVD done in 1999. A few days after she went home she noticed clear fluid draining from one nostril and draining down her throat. She also had a salty taste in her mouth and had no appetite. She was readmitted to hospital. She had an unsuccessful lumbar puncture the first day. The plan was to repeat that the next morning, but the leak stopped overnight so no further treatment was necessary.

Marilyn had her MVD done in Calgary in 2005. After about two weeks, she noticed clear fluid draining from one nostril. She was advised to stay in bed for a few days. When that failed to stop the leak, she was admitted to the hospital and had a drain inserted via a lumbar puncture. After about ten days, that was successful. The leak stopped and she returned home pain free and problem free.

 Ray from Yorkton had his MVD done in Winnipeg May 6th. He woke up from the MVD TN pain free and for the next two weeks was busy weaning himself all the drugs he had been taking. Then he noticed some clear fluid draining down the back of his throat and our one nostril. On the advice of his doctors he stayed at home taking it easy. That didn’t seem to help.

He returned to Winnipeg and was in hospital again for five days, during which time he had a drain placed via a lumbar puncture. For the first day, they drained 30 ml of CSF per hour; then 20ml the next day; and 10 ml per hour on the third day.  The leak stopped. 

Ray is home again still with no TN pain which is great, but he still worries about the CSF leak. At the moment, there are  no signs of recurrence, but at the time this newsletter was prepared he was having some trouble with a headache.

We have our fingers crossed for you Ray!!