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.

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!!