Volume 4

Marion’s Desk

I am somewhat back to normal again. Hope everyone has been pain-free this past month.

I have had several responses with regards to information that our members would like to see in our Newsletters, and that being new, proven, or ideas of dealing with TN.

One member wrote in that she has tried various varieties of home remedies. She has eaten spicy food and gets relief for a short time, stands over the toaster or a radiant heater and used a magic bag which gave her relief. She has used a variety of medications with a number of side effects. Cold weather and air conditioning causes a great deal of discomfort to her.

Another wrote in about acupuncture. Allan’s story appears in this issue. Trileptal was another medication that was mentioned as being very reliable. Vitamin B injections and Vitamin B capsules have also been recommended. The Gamma Knife and MVD procedure was mentioned along with Zostrix.

I have been lobbying in Alberta for Trileptal to be part of our Government sponsored Alberta Blue Cross Health Care and I have received notification from Gary Mar, our Minister of Health and Wellness, that Trileptal will not be added as a benefit on our government-sponsored drug program for the use of trigeminal neuralgia. Everyone in Alberta, who would is interested in having Trileptal on this program, should write to Gar Mar, Minister of Health and Wellness, Legislature Building, Edmonton, Alta, T5K 2B6 or phone the Rite Number. You may also contact Novartis Pharmaceuticals, manufacturer of Trileptal 1-800-363-8883 and inquire if they might also help. This drug is covered under the Ontario and B.C. plans, so why not in Alberta.

Happy Easter to you all. Until next month.

Marion

Patty’s Ponderings & Miscellaneous Ramblings:

I hope everyone has had a chance to look at our newly updated web site. I think we have made some good changes so far. Thanks goes to Jan Williams and Richard Foo for all the help and many many hours they have each put in to help get the new site looking great.

I’ve been very busy this past while with moving my daughter back near home. It’s great having the grandkids around again except that I forgot just how much energy young children have. I wish I had only half their ‘get up and go’!

We have had some excellent suggestions regarding input for the newsletters and will start looking at some of them shortly. Would anybody like to re-instate the buy/sell/wanted postings?

That’s all for this month and I hope you all have a wonderful Easter.

Patty

Always remember to forget the troubles that pass your way. But never forget to remember the blessings that come each day.

RECIPE...............

Happy Birthday’s To All Those With April Celebrations.

DONATIONS FOR MARCH

Audrey Korman - MB

Lois Henry - MB

Joan Robinson – N.B.

Peter Miller – Ont.

Mona Wells – AB

NEW MEMBERS FOR MARCH

Ella Burakowski – Toronto

Tina Hoffman - Thornhill, Ont.

BELATED SYMPATHY to the Evelyn Becker family of Medicine Hat, AB , who passed away December 17^th, 2003.

MEMORIALS IN MEMORY OF HEATHER SCULLY:

The Students of St. Matthew High School – Orleans, Ont.

Cheryl Jette-Wilson and Gord Wilson - Nepean, Ont.

Murray & Judy Kemp – Richmond, Ont.

Kevin & Camille Kemp – Gloucester, Ont.

Roger & Emma Lamarche – Kingston, Ont.

___________________________________________________

SUPPORT GROUP MEETING NEWS

CALGARY, Alberta:

Monthly meeting will be held on the third Tuesday of each month at Confederation Park Senior Centre, 2212 – 13^th Street, N.W., Calgary, Alberta.

The next meeting will be on April 20^th, 2004. Please mark your calendars for this date. For further information, please contact Jan Williams at 403-295-0987 or email TNAC Calgary Group at tnaccalgary@hotmail.com.

TORONTO, Ontario:

The Toronto Support Group will meet on Sunday April 25^th at 10:00 a.m. at Thornhill Community Centre, 755 Bayview Ave., Toronto, Ontario. There will be a guest speaking on Cranial-Sacral Therapy.

Please mark your calendars for this date. For more information, please contact Dana Lavrence at 905-886-7563.

WINNIPEG, Manitoba

The Winnipeg Support Group is looking for a new Support Group Leader due to the resignation of Marion Hucul. Anyone who is willing and interested in the forming of this Support Group, please contact Marion Guzik, Pres. TNAC at 403–327-7668 or email at president@tnac.org. This can be and is a very rewarding experience.

LETHBRIDGE, Alberta:

The Lethbridge Chapter Support Group is open to everyone who wishes to learn more about Trigeminal Neuralgia and who would like to support TN sufferer’s and their families. Meetings are held at 2 p.m. every second Saturday monthly at the Lethbridge Senior Centre, 500-11 Street South. Occasionally, films and/or guest speakers are presented. There is time reserved at each meeting for open discussion.

The next Lethbridge Support Group meeting will be on Saturday, April 10^th, 2004 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. Please mark your calendars for this date. For more information please contact Marion Guzik at 403-327-7668.

LETHBRIDGE CHAPTER NEXT MEETINGS.…

Saturday April 10th, 2004

2:00 p.m. @ Senior’s Centre

Saturday May 8th, 2004

2:00 p.m. @ Senior’s Centre

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TN Story by Allan Waxman – Thornhill, Ontario

“TN doesn’t know Jewish, but it knows me”

Two years ago, I thought the horrible electric pain that suddenly struck me one evening during my usual late night snack was a tooth ache, or some gum problem. The pain was in my right side of the lower jaw, and seemed to accelerate when I bit down. After I had my dentist check me out with x-ray and examination it was determined that I had a “neuralgia”. I didn’t have it attended to immediately as the pain was very infrequent, but each attack was more severe than the last and only proliferated when I ate. It lasted on and off for about two months, attacking only when I ate. As abruptly as the pain came it went away. The pain returned in what seemed to be within a few months and it attacked with a vengeance, only in the right side of my face. Shortly after I was asked how I felt and my answer was as long as I didn’t eat, sleep, brush my teeth, shave, stand in the wind or a 100 other things which caused me excruciating pain, I was doing fine. On my first visit to my family doctor about the problem I was diagnosed with Trigeminal Neuralgia. He sent me to a neurologist who confirmed the diagnosis and offered me neurontin as a solution. I also was prescribed two other individual but similar medications by a second neurologist. Both were as effective as a good sugar candy. The pain got worse, and the doctors had the same advice, different pills or surgery. At 60 years old, I neither was interested in surgery nor filling my body with foreign chemicals. I never let the pain interfere with my life, but it was awful to live with for a long time. I couldn’t speak without horrible pain for months on end. Every time I ate or drank the electric shock was so bad I had to suppress a moan.

By chance, I found an acupuncturist who has greatly helped me. I’ve been having treatments three times a week, double treatments each visit, since last July. I’ve had over 125 treatments, & am happy to say that I’m almost “cured”. I still have some ache in my right lower jaw, but all the electric pain in the right side of my face from the cleft of my chin to the top of my head is gone. I can painlessly shave, eat, talk, sleep, quality of life was restored. I can’t say I’m totally pain free but the treatments have brought me a long way. The acupuncturist that I go to is 50 miles from my home. I went three times a week, and to me the guy is a miracle worker. He has a clinic in Georgetown, Ontario, the Ontario Migraine Clinic, and specializes in curing migraine headaches. I stuck with him and had the faith needed in him to help me because I saw a miracle in his office at every visit.

People, mostly women who suffered terribly for up to 40 years with horrible migraine headaches were cured after a series of treatments that gave them back their life. He was the only one to tell me that he would make the pain go away. He kept his word. I do feel I’m at the near end of the treatments and chemical free since I started with him. The first thing he did was to get me off medication as he claims it slows down the benefits of the treatment. I’m grateful to him and living proof that without chemicals, radiation or surgery, Trigeminal Neuralgia can be overcome.

I will keep you up to date with my “voyage” to the pain free island.

Allan Waxman

TN Story by Gary Bannister

January 2000

In October '99, I reached the age of 60. During this watershed life experience, I also entered the hospital for a micro vascular decompression procedure. The tic is gone! Except for some numbness, an occasional sensation during the process of nerve regeneration, and a slight hearing impairment, the start of Y2K has special significance to me. Before I begin my tale, I extend a special thanks to my friend Bill Campbell, his Boston acquaintance Doctor Roth, Doctor Jannetta of Pittsburgh, the TNA's educational web site, my wife and nurse Judy, and mostly, Doctor Cusimano and staff of St. Michael's Hospital, Toronto.

My medical background is almost boring: A tonsillectomy in pre-school years, an appendectomy in the 8^th grade, and histamine headaches at the end of graduate school. This latter ailment occurred on the same side of my face as the tic. The accompanying symptoms were; my right eye watered, right nostril dripped, right ear ached, and spittle gathered at the drooping right side of my mouth. The diagnoses were capillaries not returning to normal after a stressful period. The medication was the drug cafergot taken on the anticipation of a headache. The medication worked and as predicted the headaches ceased. Assurance has been given that, although interesting, there is no relationship to tic douloureux.

The following is a historical account of my tic saga:

1980's

In the early 80's I began to experience electric shock-like stabs when I brushed my forehead on the right side. The attacks lasted for a couple of weeks. I attributed them to a sinus condition, seasonal changes in atmospheric pressure and/or the hay fever season. A heat lamp and withdrawal from people and activity appeared to help. By the end of the decade the affliction 'spread' to the cheek/ nose area of my face. I followed the advice from friends and gave up drinking red wine, continued with heat, sinus tablets and hay fever remedies. The attacks lasted for up to 2 weeks, but when they were over, I quickly forgot about them.

1990's

As the duration and severity of the episodes increased, I sought medical advice. A medical doctor administered acupuncture. It felt fine during the treatment, but the shocks soon returned. Finally, the diagnosis was Trigeminal Neuralgia. Tegretol was prescribed. In the beginning the dosage was 1 milligram twice a day to combat attacks that now lasted for about a month. In the end I was taking 2 milligrams up to 6 times a day. The tic had moved to my lower jaw. I could not eat, talk or sleep without constantly increasing the dosage. The last, and I hope final, episode lasted from the beginning of February 1999 until surgery.

Each year I have invited old friends to an annual ski outing day, "Men's Day". In March 1999, Bill Campbell arrived for the event from Boston with information that made a profound change to my life. Knowing of my affliction, Bill gave me the names, phone and fax numbers of two doctors. From Bill's description, Doctor Roth had assessed my situation and recommended that I contact Doctor Jannetta.

A few days later I prepared to fax Doctor Jannetta. It was only while I was documenting my history, that I realized that I was about to fax the Chairman of the Medical Advisory Board of the Trigeminal Neuralgia Association. I hesitated, but finally sent the fax. By the end of the day Doctor Jannetta's office had left me a telephone message recommending two Canadian neurosurgeons. One, Doctor Cusimano, practices in Toronto.

Media reports on the current status of medical resources in Canada were discouraging. The professional response of Doctor Cusimano and his associates was encouraging. After an extensive interview, neurological testing and family counseling, microvascular decompression was decided on. The procedure took place at St. Mike's on October 23, 1999. It was successful.

Each day I feel better and thankfully think of all those who supported me through this most trying life experience.

Gary Bannister

gbannister@look.ca

Please Log On To Our Website:

www.TNAC.org

We are pleased to announce an updated version of our web site. There are a couple of new pages for you to check - look at the Support Groups for a list of the support groups across Canada. We hope this list grows until we have a support group in each major city.

Check out the "calendar" for a list of dates of meetings and, when available, special events. We are also collecting TN stories for the web. You can either send them to us or add them yourself using the "Message Board" The "Message Board" is a new feature where you can post comments, questions or your own TN story directly on-line. The Message Board opens into a new window and when you are done closing the window will jump you back to the TNAC site.

Here is how to use the Message Board/Forum:

When you wish to post a reply or start a new topic, you can do it either as a guest (no name) or as yourself - (we hope you choose this route). In either case you can read all the entries and post a reply if you wish.

Step one - register. See the top right hand corner and select "register"

Your name can just be your first name, an alias, or nickname. If someone else uses your name then you will need to select another. So if you are the first "Marion" - you can use that, but if someone else already has that name then you need to use something else - like MarionG or Marion01.

The password is just for this site - it does not need to be the same as your normal e-mail password.

When you finish filling in the form, you can then log on and each time you post a message your name should appear. (On the most recent message I forgot to log on first so my answer to the question appears as a "guest")

Step two - log on

That is it.

A Big Thank You goes out to Jan Williams, Support Group Leader, Calgary, Richard Foo, husband of a TN sufferer, Lynn, and to Patty, our editor for revising the website. I think it looks very professional and very easy to understand. Congratulations on a truly great site.

These are real answers given by children – Submitted by Sy Moskowitz

Q. Name the four seasons.

A. Salt, pepper , mustard and vinegar.

Q. How is dew formed?

R. The sun shines down on the leaves and makes them perspire.

S. How can you delay milk turning sour?

A. Keep it in the cow.

Q. What happens to your body as you age?

A. When you get old, so do your bowels and you get intercontinental.

Q. How are the main parts of your body categorized? (e.g. abdomen)

A The body is consisted into three parts – the brainium, the borax and the abdominal cavity. The brainium contains the brain, the borax contains the heart and lungs, and the abdominal cavity contains the five bowels, A,E, I, O and U.

Q. What happens to a boy when he reaches puberty?

A. He says good-bye to his boyhood and looks forward to his adultery.

(The following article is reprinted here with permission from R. A. Lawhern, Ph.D)

CHOOSING TREATMENTS FOR TRIGEMINAL NEURALGIA: Part 4

· How complex is your case?
If your TN pain has just emerged and you have had successful relief of pain by taking an anticonvulsant drug under supervision by an Internist, it may be that this practitioner will be quite adequate to supervise medical management of your disorder. However, if you are having difficulty with your medical treatment, or new problems are emerging after a long period of previous success, then you may need to reevaluate whether you need to find more specialized assistance from another doctor. So how do you decide who is best qualified?

There are several questions you can ask a physician, to assess whether he or she is someone you wish to work with in TN treatment or management. Surveys reported over the past 30 years in the medical and popular press suggest that patients who are passive and uncritically accepting of their doctors' advice tend to do less well on outcomes. [see, for instance, BA Schulman or WM Strull, et al] Actively questioning the reasons behind the doctor's advice may improve your chances of a good result by drawing the physician's attention to factors in your case that may not have been noted or accorded proper significance.

The answers you receive to questions like those below can be indicators to help you evaluate your relationship to a doctor and the advice he or she gives you. No care giver is going to score perfectly on every point in the list. However, the more positive answers you receive, the more confidence you can have that you are placing yourself in good hands. All of these points are worth discussing when you interview a doctor you don’t know.

* “How much do you expect me to become involved as a member of my own treatment team and how will you assist me to do so? If I cannot be active in this way, would you be will- ing to invite someone in my family to act on my behalf?”

* “What are the risks and benefits of the procedures you advise? What is the success rate among people you treat? What other procedures are there? Can I talk to some body about procedures you do not usually employ?

* “How many of these surgeries have you done? How often is the procedure completely effective? Partially effective? What percentage of your patients died during or shortly after sur gery? If you have only done the procedure a few times, then will you be assisted in the operat ing theater or clinic by a more experienced surgeon? If the surgery isn't successful, then what do we do next?" While there is probably no generally accepted standard of practice for numbers of procedures a doctor does, it may be reassuring to know that the surgeon does a procedure 50 times per year, rather than only five times.

* “Do you maintain active relationships to other physicians in related fields, and can you make a referral for a second opinion on what you propose?"

*”Have you had recent continuing medical education in a pertinent field? Have you taught other doctors?"

*"Like other professionals, doctors sometimes find that about half of what they were taught in medical school is outdated within five years. Keeping up with research is always difficult. However, do you or somebody on your office staff subscribe to a medical clipping service, to keep current on research in your specialty?"

*”How can I become current on what is going on in medicine that applies to my case? Does your office provide written information and/or Internet sites I can read at home to understand

the treatments proposed for me?”

*”Do you treat other complicated cases & regularly see other patients who have problems similar to mine? Would any of your patients be willing to discuss their surgery with me?”

Summary of Treatment Options

The following list summarizes treatment options you may choose from or combine, to find resolution or relief for your TN. These options are often combined, and not all of them apply for all stages of treatment in all patients. Consult your healthcare provider for advice on which modes of treatment are most appropriate for you. More information is available on each of these options from off-site Organizations and Resources and from on-site articles referenced in the Menu of this page.

· Medical Treatment

o Anti-Convulsive Drugs (Tegretol, Neurontin, Dilantin, others)

o Anti-Spasticity Drugs (Baclofen)

o Tri-Cyclic Anti-Depressant Drugs (amitriptyline, protriptyline, nortriptyline, others).

· Medical Pain Management

o NSAIDS (Aspirin, other non stereoid anti-inflammatory drugs)

o Opioids (Percodan, Oxycodone, MS Contin, others)

· Surgical Treatment

o Nerve Block

o Glycerol Rhizotomy

o Balloon Rhizotomy

o Radio Frequency Rhizotomy

o Microvascular Decompression

o Stereotactic Radiosurgery

o Partial Nerve Section

o Neurectomy

· Treatments of Alternative Medicine [Author's Note 2]

o Acupuncture

o Acupressure

o Ayurvedic Medicine

o Biofeedback

o Capsaisin Cream

o Chiropractic

o Exercise

o Meditation and Creative Visualization

o Self Hypnosis

o Transcutaneous Electro-Neural Stimulation (TENS)

o Vitamin Supplements

Note 2: Patients and their families should be aware that medical evidence for the efficacy of "alternative medicine" treatments is not yet established consistently in clinical studies. There are anecdotal reports of positive benefits in some patients, but responses appear to be highly individual. Some patients also report a worsening of their pain while undergoing such treatments. These techniques should not be viewed as a substitute for regular consultation and medical management by a qualified physician or craniofacial pain specialist.

The choices and combinations between these treatment options are influenced by the factors discussed in this article. Please talk about your choices with your primary medical care provider or other specialists in neuralgia pain, before committing yourself to a course of action. Above all, please study so that you can become a more informed health services consumer.

April 19, 2002

THE TNAC NEWS