Volume 5, Issue 5

May 1, 2005 

 

Medical Information/News.

Drug of the Month.

Marion’s Desk..

Support Group News.

Members’ News.

From our Members.

TN Stories.

Patty’s Ponderings and Miscellaneous Ramblings.

Seminar Announcement 

 

In Calgary last month we had a Chiropractor, Dr. Joseph Alpine speak to our group about what benefit people with TN can gain from Chiropractic treatments.  He explained to us that in some people the trigeminal nerve could be compressed by the boney structures in the skull and that a Chiropractor treatment may result in a decrease in pain in those individuals.  Generally he felt the best course of action for people with TN is treatment by a Neurosurgeon.

 

He also spoke about some of the other “non-traditional” therapies such as diet, acupuncture, and massage therapy.   His recommendation is that if you wish to try one of these treatments you should.  When you are facing a difficult disease like TN if something helps – then do it.  No matter what you try there are only three possible outcomes – you will improve, there will be no change or you could make it worse.  What works for one person may not work for others and you could be the one who has a success story.   The bottom line is that no one should live in pain.  

 

******

 

In March, we had a presentation by a Pharmacist, Kelly Wizniak.  She reviewed many of the common drugs used for TN and the main features and suggestions for taking these drugs to gain the maximum effect.    For example, if you are taking drugs like Gabapentin (Neurontin) and Carbamazepine (Tegretal), these drugs must be taken for at least a few days before the levels in the blood are high enough to provide pain relief.  She emphasized the necessity of ramping up to therapeutic doses slowly – and decreasing slowly when you are pain free.  These drugs are ineffective if you “pop a pill” when you have pain.  If that is how you take your drugs, she believes any benefit is more of a placebo effect.

 

She also suggested that anyone with nerve pain – any kind of neuralgia – take a multivitamin  tablet daily as Vitamin Bs are known to decrease nerve pain.  If you are on Carbamazepine you should also be taking Vitamin D and Calcium.  However, if you are taking Gabapentin you should not take Calcium or magnesium within 2 hours of your Gabapentin.

 

Kelly also reviewed the process for the development and approval of new drugs in Canada.  Her comments are reflected in this month’s “Drug of the Month” profile.

 

*****

 

If you have a topic you would like to see in the newsletter, please let me know  ....Jan

 

Tectin

This is a new drug being developed by International Wex Technologies, a Vancouver-based company.  The drug is derived from the poison of the puffer blowfish.   This poison has a direct effect on the nerves and seems to stop the nerves from transmitting pain signals.  

The puffer fish has been known for thousands of years to cause a variety of strange sensations in many people who consume it. These are caused by the release of the toxin known as tetrodotoxin in its body. Some individuals who consume puffer fish experience numbness in the tongue and lips. Headaches can follow along with nausea, vomiting, paralysis of the face and extremities, and even death, which is why only specially trained and licensed chefs may prepare puffer fish for Japanese restaurants.

The toxin, however, becomes completely safe and beneficial to patients when processed into Tectin.

As an analgesic, TECTIN is rated as 3,000 times more potent than morphine.  In clinical trials it has been found to have few side effects, doesn’t interact with other drugs and is non-addictive.    It provided excellent pain relief in 70% of the patients test.   Tectin can only be administered at this time by injections.  Patients are given two injections per day for 4 days.  Pain relief lasts then for up to 2-3 weeks.

Tectin is being tested primarily on cancer patients who have not responded to other analgesics.   There are currently some trials being done in Canada on non-cancer patients and these could include people with Trigeminal Neuralgia.  Special access to this drug can be obtained usually through your doctor or local pain clinic.   The cities in Canada that have been participating in trials of Tectin are Saskatoon, Edmonton, Calgary, Montreal, Toronto and London. 

A preliminary report on all these studies is not expected until later in 2005 and then additional studies on a larger variety of patients will need to be completed before the drug can be approved for general distribution.  Normally this would take 1 – 5 years.

 

Do you have a drug you would like to have profiled in this newsletter?  If so please let me know … Jan (403) 295-0987 or email jan.williams@shaw.ca

 

 

 

Thank you to all the kind people who phoned and emailed me to wish me well.  I am feeling much better and hope eventually everything will settle down once again.

 

Dr. Kaufmann will be coming to Edmonton on May 29^th, 2005 for another great presentation, so I hope all of our members and families attend.  Please see the flyer in this edition.   The wording of our Laminated Emergency Cards will be ready shortly, so if you have not notified me of your intentions, please do so by the end of May.

 

Due to the terrific amount of Spam that is on the net, please mention TN in the subject line when emailing me. Thank you.

 

Until next month, I wish you all a pain free, safe and happy Victoria Day holiday.

 

Marion

 

Calgary, Alberta

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on May 17, 2005 at Confederation Park Senior Centre; 2212 13^th St. NW.  Contact Jan at 403-295-0987 or jan.williams@shaw.ca.   

 

Note:   After this May meeting the time and day of the meetings is likely to change.  The majority of Calgary members would like to have the meetings in the afternoon rather than the evening.  As soon as we have a location that can accommodate an afternoon meeting we will change.

 

Edmonton, Alberta

The first meeting of the Edmonton group will be May 29, 2005 at 2 pm at the Grey Nun’s Hospital,   1100 Youville Drive W.   At that time Dr. Anthony Kaufmann will be the guest speaker.  For more information please contact Katherine Nero-Campbell at (780) 490-0243.

 

Lethbridge, Alberta

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, May 14, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. Contact Marion Guzik at 403-327-7668.

 

Toronto, Ontario

The Toronto Support Group meets the last Sunday of each month.  The next meeting will bet on May 29, 2005 at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. Contact Dana Lavrence at 905-886-7563, Sandra Arangio (905) 284-9215 or Kathy Somers (905) 853-9849

 

Vancouver, BC

The next meeting will be June 18, 2005 at 10:30 am at the GF Strong Rehab center; 4255 laurel Street.  Contact: Ann Hopkins - Ph. 604-732-1673 - email:  annhopkins@shaw.ca

 

Donations:

Helen Amos – Burlington, ON

Kari Van Herk- Tofield, AB

Arlayne Davis – Blackie, AB

Elizabeth Pollock – Cambridge, On

Johanna Hensen – Ingersol, ON

Kurt Otto- Peterborough, ON

 

IN MEMORY OF DONALD McDONALD

Vera Cail – Camrose, AB

 

Did you know…?

 

It has been reported that Isabella, wife of Canada’s First Prime Minister, Sir John A MacDonald suffered from “neuralgia of the face”.  She was more or less an invalid for years and probably addicted to opium for most of that time.  She was often in extreme pain from a “painful tic” and most people think she had tic douloureux. 

                 ... Jan

 

From Delta, BC

 

I attended my first support group in Vancouver in March 2005 and was very impressed with the information available on TN.  The speaker Dr. Sujay Mehta was very informative and spoke in laymen's terms.  Ann Hopkins and her colleagues really went out of their way to ensure everyone was informed and had available materials.  I learned more in these 2 1/2 hours with respect to TN than I had learned in the past 4 years.

 

I'm female, 68 years old, have had TN for just over 4 years.  Dr. Milton Wong a Vancouver Neurologist had the pain under control during this period with a combination of drugs.  Dr. Wong closely monitored my progress, after a 10 month of period of no symptoms he decided to slowly take me off drugs; I was drug free for 3 months.  I returned from a trip from Australia at the end of December and TN came back again, I would have not have know why unless I had been to the support group as Dr. Mehta mentioned research had found some patients had found TN re-occurred after long air trips which may  be a result of lack of oxygen.

 

I am one of five children; I am the third child in the family who suffers with TN.

 

When I was 12 a large rock came over the fence at school and hit me in the mouth and smashed my two front teeth, the lateral tooth on the right side is crowned, whether or not dental work is a cause of the deterioration of the nerve is anyone's guess.

 

I just hope research can help find a cure for this very painful ailment.

 

Joya Dickson,

joya@telus.net

 

 

From Cooking Lake, AB

 

After having TN for over 42 years, I had MVD surgery two years ago in July on the left side. 

 

I went to 3 neurologists and a neurosurgeon in Edmonton and not one of them would do anything for me but put me on more pills and then mix them with other pills.

 

I found Dr. Kaufmann’s site on the computer and faxed him.  Janice talked to me on the phone and told me Dr. Kaufmann was very willing to take on my case and look at my MRI and set up the MVD surgery right away.  I was thrilled that he would do this so fast and that a doctor was so willing to help me.

 

Dr. Kaufmann told me that after all the years I have had TN all the meds available would not help me for long and that surgery was my best option although he was not very confidant that the surgery would work 100% for me. I agreed to try it.   Unfortunately it did not work.

 

After waiting for a period of time, I went back to Winnipeg for the Gamma Knife procedure on Oct/04.  This did not work for me either.  At this time, Dr. Kaufmann is not willing to proceed with any other surgery for fear of doing more harm than good.   I am not sorry that I tried the surgery and the Gamma Knife.

 

Unfortunately, I have had trouble with the right side of my face over the years, and found out I have TN on this side also, (my luck).  Dr. Kaufmann has suggested MVD surgery.  (I am praying for better luck this time).

 

I would like to touch on the subject of the Feb. Newsletter:  “NOTE:  According to the Canada Health Act, if you receive medical treatment outside your own province the cost of treatments is covered.”

 

I wanted to let you know about the trouble I am having with Alberta health so you could relay this to other members.  Since my Gamma Knife treatment Oct. 04, I have received two letters from Alberta Health that state they will not pay the $l7, 000 dollars for this surgery since this treatment is available in Edmonton and in Calgary.   They have refused also to pay any travel or rooms in Winnipeg for me, even for the first surgery 2 ½ years ago, so I have no hope for the 3^rd surgery.  They want a letter from a Neurologist in Edmonton or Calgary stating that they referred me to Dr. Kaufmann for this surgery.

 

If you could talk to anyone that has any ideas, or pull on how to deal with this issue with Alberta Health please let me know.  (I can’t afford $17,000 dollars).

 

I hope you are in good health and pain free.

Best Wishes

Barbara Bienert

 

Comment from Jan – It looks like Alberta is not following the Canada Health Act in this respect.  I am going to write to both the Minister of Health for Canada and the Minister of Health and Wellness from Alberta and ask them to comment on  this situation.  I’ll include any responses I receive in the next newsletter.  In the meantime Barbara – don’t pay the $17,000.  Your medical expenses should be covered anywhere in Canada by Alberta Health.   I wonder if the “Friends of Medicare” would be interested in this situation?  We’d love to hear from anyone else with ideas or comments.

 

It’s interesting that it is only the Gamma Knife Treatment in question – the fee for the MVD would be far more expensive and yet there seems to be no incident of the Alberta Government asking the patient to pay that fee..

 

 

 

Patty has been having some problems with her wrist and has been unable to do much on the computer lately.  I’m sure she’ll have lots to say in the next newsletter.  Take care of yourself Patty – and give those fingers a rest!!!                ……Jan

 

HAPPY BIRTHDAY AND HAPPY ANNIVERSARY

TO THOSE WITH May CELEBRATIONS