Trigeminal Neuralgia Association of Canada
Published by: The Lethbridge Chapter
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WHO WE ARE.....
The Lethbridge 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.
This newsletter is not intended to diagnose, prescribe, or to replace the service of your physicians; but only to give you information about our member’s experiences.
Donations to the TNAC are gratefully received. Your monetary support helps defray the cost of TNAC News, copies, supplies, postage, etc. Please make your cheque payable to Trigeminal Neuralgia Association of Canada and mail to: 1514 Lakemount Blvd., Lethbridge, Alberta T1K 3K4
NEXT MEETINGS.…
Saturday Oct. 11th, 2003
2:00 p.m. @ Senior’s Centre
Saturday Nov. 8th, 2003
2:00 p.m. @ Senior’s Centre
New Memberships:
Joan Hetherington
Donations Received October 2003:
Susan Rawlins
In Memory Of Hazel Nish—In memory of my sister Hazel; Ethel Stanford - Edmonton
MVD Surgeries
Best wishes to Sharon Habiak, Calgary; Rick Keuben, Calgary; Sandra Arangio, Toronto on their MVD surgeries.
OUR DEEPEST SYMPATHY’S:
Peter and Irene Klassen of Regina on the death of Peter’s Mother in Winnipeg on August 30, 2003.
Erna and Abe Janzen on the passing of Erna’s brother in Coaldale, AB on September 23, 2003.
HAPPY BIRTHDAY’S TO ALL THOSE WITH OCTOBER CELEBRATIONS!
Marion’s Desk
I am so happy to report that we will now be able to send out the tape of Dr. Casey and Dr. Kaufmann. We had a bit of trouble but hopefully now Zennon will be able to complete the tapes. I would ask however that all of you who have contacted me for the tape, please mail your $10.00 to me as soon as possible and as soon as this is received your tape will be mailed out to you. Some of you have already paid so don’t pay again. I am sure you will all benefit by these tapes. Postage increased since I first inquired and the cost of mailing out the tapes has gone up significantly but, we won’t increase the cost for this time.
Yours truly is still on sick bay but I am trying to keep up with the daily task of all the TNAC work that is coming in. Every day there are more and more people inquiring about our Association and that is very gratifying as they want information on Trigeminal Neuralgia and have not had anyone in Canada that they could talk to until now. This signifies to me that there was a great need to form the TNAC and hopefully we will be able to continue to help these people. With the help of our Support Group Leaders and our members donations I think we can.
I was pleased to attend the first meeting in Calgary of the TNAC Support Group and although we were few in number due to the weather a great Support Group is being formed. Welcome Aboard the TNAC Express Jan. we will help you in any way we can.
Happy Thanksgiving to you all.
Marion
Recipes for October
Submitted by Marion -
They say fruit should be eaten before your meal to help with the digestive process. This is an excellent way to serve fresh fruit before your meal but I have it during and after too as it is so good.
Use Watermelon, Cantaloupe, Honey Dew, Strawberries and cut into serving size chunks, leaving Strawberries whole.
Dip into sour cream and then demerara brown sugar. M’mm, m’mm GOOD!
Enjoy!
Mexican Salad
Taken from Synchronicity, The Magazine Aug/Sept. 2003
1 head Leaf or Romaine lettuce (washed, dried)
1 tomato (chopped into cubes)
1 avocado (chopped into cubes)
1 lime
1 small clove garlic
Dash Celtic sea salt
Handful fresh cilantro
1 Tblsp. Cold-pressed flax oil
Place cut or torn lettuce in bowls as a base for the other salad ingredients. Place tomato, avocado, sea salt, cilantro & flax oil in a separate bowl. Squeeze the juice of the lime over them. Chop or press garlic into this bowl. Toss ingredients together.
Serve tomato/avocado mixture over the salad greens.
BONUS OCTOBER RECIPE:
Perfect Pumpkin Pie
1 (9 inch) unbaked pie crust
1 (15 ounce) can pumpkin puree
1 (14 ounce) can Sweetened Condensed Milk
2 eggs
1 teaspoon ground cinnamon
1/2 teaspoon ground ginger
1/2 teaspoon ground nutmeg
1/2 teaspoon salt
1 Preheat oven to 425 .
2 With mixer beat pumpkin, condensed milk , eggs, spices and salt. Pour into crust.
3 Bake 15 minutes. Reduce oven temperature to 350 ; bake 35 to 40 minutes longer. Cool. Garnish as desired. Refrigerate leftovers.
Article Title: The Treatment of Trigeminal Neuralgia in Patients with Multiple Sclerosis using Percutaneous Radiofrequency Rhizotomy
Authors: Caglar Berk, Constantine Constantoyannis, Christopher R. Honey. The Canadian Journal of Neurological Sciences 2003; 30: 220-223
This article from The University of British Columbia reviews their experience with the use of radiofrequency rhizotomy for treatment of multiple sclerosis (MS) related trigeminal neuralgia (TN). The senior author, Dr. Honey, treated 86 patients for TN between 1996 & 2000 including 13 who also had MS & were treated with radiofrequency rhizotomy. In 10 of the 13 patients, full pain relief was achieved without the need for medications, although half of them needed two or three radiofrequency rhizotomy (RFR) procedures during the 2 to 6 year follow-up period.
The authors have demonstrated good success in treating this difficult form of MS related TN, using the nerve injury procedure percutaneous radiofrequency rhizotomy. Similar results have been achieved with other nerve injury procedures such as balloon compression rhizotomy, percutaneous glycerol rhizotomy and gamma knife surgery.
Patients with MS related TN are generally not candidates for microvascular decompression (MVD) surgery, because the cause of their disease is MS demyelinating plaques within the brainstem rather than the blood vessel compression that causes the non-MS related or typical TN. The authors noted that “There were no complications of the procedure (e.g. anesthesia dolorosa, corneal ulceration, inability to chew). The facial numbness created by this procedure appears to be well tolerated in this cohort. Patients typically no longer notice the numbness after a few months.” While this may be true in their group of 13 patients, radiofrequency rhizotomy generally is only effective when some degree of permanent facial numbness is produced. In larger series, approximately 5% of patients are severely bothered by the uncomfortable feelings or actual pain related to such numbness.
Multiple sclerosis related TN remains a difficult problem to treat, with a large proportion of patients failing to achieve permanent pain control with medications & a majority requiring repeated nerve injury procedures to maintain pain relief. The full selection of rhizotomy procedures should be considered for such patients, with a goal of providing long term pain relief with lowest risk of permanent facial numbness.
Literature Update
(MVD in U.S. study document)
By: Anthony Kaufmann, MD, BSc (Med), MSc, FRCSC and Chris Wiebe, BSc
Article Title: Microvascular Decompression Surgery in the United States, 1996 to 2000: Mortality Rates, Morbidity Rates, and the Effects of Hospital and Surgeon Volumes
Authors: S. N. Kalkanis, E. N. Eskandar, B. S. Carter, F. G. Barker II.
Neurosurgery 52: 1251-1262, 2003
The authors of this study examined the results of MVD surgery over a 5-year period, as carried out in 305 hospitals in the United States. This represented 20% of non-federal hospitals in the United States. The authors pointed out that microvascular decompression surgery is associated with low morbidity & mortality rates when performed at specialized centers, but many MVD procedures are performed outside such centers. They examined the Nationwide Inpatient Sample database & compared the hospital or surgeon caseloads without the occurrence of major complications.
There were a total of 1590 patients undergoing MVD procedures including 1326 for trigeminal neuralgia. This number represents one fifth of the operations performed over 5 years. Therefore, approximately 1300 MVD’s are performed for trigeminal neuralgia in the United States annually. More than one half of the MVD’s were performed by surgeons who did 3 or less MVD’s per year, & 29% of MVD’s were carried out by surgeons who performed only one such surgery per year. In this series, representing 1/5 of the United States experience, only 3 surgeons did 30 or more MVD’s per year.
This study did not examine the results of surgery in terms of disease cure or symptoms relief, but rather focused on the incidence of major complications. The study identified that major problems related to surgery were 12 times less common among surgeons doing the highest number of MVD’s per year. The overall mortality rate (death due to surgery) was rare, only 3 per 1000 operations, however, 3 of the 4 deaths followed procedures performed by surgeons who had only performed 1 MVD that year.
This is the first large study demonstrating the reduced risk of major complications when MVD surgery is performed in special centers with a high volume of experience with the procedure. While the study did not analyze the effectiveness of surgery in curing TN, it may be reasonable to also expect better outcomes related to higher volume of experience. The authors suggested their “findings should be of interest to patients seeking high-quality MVD care, and to physicians responsible for advising them”.
ASK THE SPECIALIST:
Answers provided by Dr. Kaufmann, September 2003
1. Question: Is there anyone studying using stem cells to fight TN in Canada?
Answer: I am not aware of any stem cell research related to TN. There is in fact very little basic science or laboratory research related to TN. One of the reasons for this is the lack of an animal model, that is rats or guinea pigs don’t get TN as far as we know.
2. Question: Has there been any research done regarding links between TN and Shingles and if so, what are the results of such findings?
Answer: Shingles, also know as Herpes Zoster, is a condition related to the herpes simplex virus. More than half of us have this virus living in our trigeminal nerve cell, although this rarely results in disease. If the herpes virus becomes active, it can lead to recurrent blistering attacks known as cold sores, or rarely a more severe condition known as shingles. Shingles often involve the upper portion of the face (VI distribution). The shingles outbreak generally clears on its own, although some people then develop a chronic pain in the effected areas known as postherpetic neuralgia. Shingles, postherpetic neuralgia and trigeminal neuralgia do have some common features, although there is no clear link between the common herpes virus causing shingles and the relatively rare disease of trigeminal neuralgia.
3. Question: I have arterial vessel malformation (AVM) in the head and TN. Is it possible to do the surgery MVD?
Answer: An arterial venous malformation is an abnormality people are born with, consisting of a tangle of blood vessels within the brain tissue. These may vary in size from very small (less than 1 cm) to large (over 6 cms), and may reside in any part of the brain. These are usually not symptomatic in childhood, although it may cause significant problems anytime throughout adulthood, including brain dysfunction, seizures, and hemorrhage or bleeding into the brain. For a patient with both TN and AVM, the treatment options for both conditions should be carefully considered. MVD surgery may be performed, provided the AVM is not in the immediate vicinity of the trigeminal nerve.
4. Question: Is there a connection between migraines and TN?
Answer: The short version is no. there is one form of migraine however called migrainous neuralgia or cluster headache that is closely related to trigeminal neuralgia. In this condition, there are severe headaches in the region of the forehead and eye often lasting hours at a time, and recurring in clusters (hence the name). The headaches are often associated with tearing from the eye, runny or stuffy nose and constriction of the pupil. Rarely do these cluster headaches become more frequent and occur on a daily basis, and then the condition is call chronic cluster headache. This may respond to medications. We do have a growing experience with surgical treatment for chronic cluster headache using similar techniques applied to trigeminal neuralgia, including microvascular decompression and rhizotomy techniques. However, the more common migraine conditions do not respond to such surgical treatments.
A Little Sunshine………..
Submitted by Jan Williams-Calgary
“Give me a sentence about a public servant,” said a teacher. A small boy wrote: “The fireman came down the ladder pregnant”. The teacher took the lad aside to correct him. “Don’t you know what pregnant means?” she asked. “Sure” said the young boy confidently. “It means carrying a child.”
Susie Sunshine asked her Sunday School class to draw pictures of their favourite Bible stories. She was puzzled by Jimmy’s picture, which showed four people on an airplane, so she asked him which story it was meant to represent. “The flight to Egypt,” said Jimmy. “I see...and that must be Mary, Joseph and Baby Jesus,” Ms. Susie said. “But who’s the fourth person?” “Oh, that’s Pontius the Pilot!”
An exasperated mother, whose son was always getting into mischief finally asked him, “How do you expect to get into heaven?” The boy thought it over & said, “Well, I’ll just run in & out & in & out & keep slamming the door until St. Peter says, “For heaven’s sake, Jimmy, come in or stay out.”
A nursery school teacher was delivering a station wagon full of kids home one day when a fire truck zoomed past. Sitting in the front seat of the fire truck was a Dalmatian dog. The children started discussing the dog’s duties. “They use him to keep crowds back,” said one youngster. “No,” said another, “He’s just for good luck.” A third child brought the argument to a close. “They use the dogs,” she said firmly, “to find the fire hydrant.”
Little Johnny watched, fascinated, as his mother smoothed cold cream on her face. “Why do you do that, Mommy?” he asked. “To make myself beautiful,” said his mother, who then began removing the cream with a tissue. “What’s the matter?”, asked little Johnny, “Giving up?”
To Brighten Your Day!
SUPPORT GROUP MEETING NEWS
CALGARY, ALBERTA
The first meeting of the Calgary Chapter of the TNAC was held on September 16th, 2003. This was the night of Calgary’s first snow storm of the season and the weather was awful. There were a total of 6 people who were able to attend.
Monthly meetings will be held on the third Tuesday of each month at:
Confederation Park Senior’s Centre
2212—13th Street, N. W.; Calgary, Alberta
The next meeting will be October 21, 2003 at 7 p.m. Please mark your calendars for this date.
For further information please contact: Jan Williams - Phone (403) 295-0987 or email: Jan Williams at TNAC_Calgary@hotmail.com
WINNIPEG, MANITOBA
The Winnipeg Support Group will meet on October 23rd, 2003 at 7 p.m. at:
Health Sciences Centre, General Hospital
2nd Floor - Cafeteria, Manitoba Room
820 Sherbrook Street; Winnipeg, Manitoba
Please mark your calendars for this date.
For further information please contact Marion Hucul at email: m.hucul@shaw.ca or Tammy Bredin at (204) 787-7278.
TORONTO, ONTARIO
The Toronto Support Group will meet on Saturday October 18th, 2003 from 1-3 p.m. at:
Toronto Western Hospital
399 Bathurst Street & Dundas W.
2nd Floor, West Wind, Auditorium 401
Toronto, Ontario
The lecturer will be Dr. Anthony Kaufmann and his topic will be “The Introduction of the First Gamma Knife and Its Use in Treatment of Trigeminal Neuralgia”
Please mark your calendars for this date.
For more information, please call Dana Lavrence at (905) 886-7563 or Carol Horvat at (905) 687-8562
Please Note: Striking Back Books & TNAC Lapel Pins will be available for sale at this meeting.
Items of Interest from recent magazines:
Synchronicity,The Magazine, August/Sept. 2003:
Page 9 of this particular issue of the magazine has a good article on Food & Nutrition. It tells of how certain foods that you eat can help alleviate some of your pains. Did you know that tart cherry extract, blackberries, raspberries & strawberries can be helpful? The article also has some excellent recipes using some of the “anti-pain” foods. I have placed one of the recipes in our recipe section of this issue.
The Source, August/September 2003
Page 14 has an article titled “Berry Good Health” which tells of multiple studies done about raspberries and their effects on protecting us from some types of cancer. I found it to be quite informative.
NOTE: If you wish a copy of either of these articles and can’t get them from your news stand, let me know & I’ll send you one. Or, if anyone wishes me to include these in a future issue of the TNAC News, just email me at pgmoyer@telusplanet.net
Using Complementary Therapy to Relieve Pain (taken from The National Pain Foundation)
Part 3 (Continued from September issue)
As so many people in chronic pain know, medication alone often is not enough to relieve pain. The tenacity of chronic pain often leads people to areas outside of conventional Western medicine. More and more Americans are trying complementary and alternative treatments for their ailments, and this is especially true for those in chronic pain. The quality of research supporting complementary and alternative approaches varies from therapy to therapy. As with any treatment approach, before trying or using any of these suggestions, the use of complementary therapies should be discussed with your doctor.
Herbal Medicines & Supplements
Many people come across herbal remedies when they’re looking for relief. In the U.S., herbal remedies do not have to meet quality control standards. The U.S. Food & Drug Administration (FDA) does not regulate the manufacture of herbal remedies or dietary supplements. Such remedies & supplements do not need FDA approval before they are marketed.
The FDA defines a dietary supplement as a product taken by mouth that contains a “dietary ingredient” intended to supplement the diet, including vitamins, minerals, herbs or other botanicals, amino acids & substances such as enzymes, organ tissues, glandulars, & metabolites. The Dietary Supplement Health & Education Act (DSHEA) of 1994 places dietary supplements in a special category of “foods,” & requires that supplements be labeled as such. Under the DSHEA, a manufacturer of a supplement must determine that the product is safe & that any claims made about the product must be substantiated by adequate evidence to show that such claims are not false or misleading.
Because such remedies are not regulated, it’s important to protect yourself when choosing to take such remedies.
1. Check with your doctor before taking any herbal remedy. Herbal remedies can interact with prescription medications & have adverse outcomes for you.
2. Choose remedies that have a National Formulary seal. This seal indicates that the herbs were prepared according to standards established by the U.S. Pharmacopoeia.
3. Read the label carefully, especially if you have allergies. Check with your doctor about ingredients that are unfamiliar.
Homeopathic Medicine
Homeopathy is an alternative, non-toxic approach used to treat illness & relieve discomfort in a wide range of health conditions. Founded in Germany in the late 1860’s, the practice of homeopathy is based on using the “law of similars” to stimulate a healing response - a principle that goes back to the days of Hippocrates. The law of similars states that a substance that will cause disease symptoms in a normal person can, when given in homeopathic dilutions to an ill individual, prompt the same set of symptoms to initiate a healing response. Homeopathic preparations, called remedies, must be prepared in a certain way, & the dilution used will depend on the symptoms being treated. As with any alternative or complementary therapy, make sure you consult with your physician before taking traditional & homeopathic remedies at the same time. Mixing medications can result in harmful medical interactions.
Hypnosis
Hypnosis involves entering an altered state of consciousness whereby suggestions made while an individual is in an altered state can lead to changes in behavior or, in the case of pain, altered physical sensations. According to the American Society of Clinical Hypnotists, clinical hypnotists use mental imagery to help patients visualize their pain or disease & then encourage them to imagine these images changing to healthy ones (e.g., a patient with a headache may focus on visualizing constricted blood vessels in the brain & then imagine the blood vessels opening & relieving the pain). Self-hypnosis involves inducing an altered state of consciousness - and thus controlling pain sensation - by yourself.
NOTE: Next month we will bring you Part 4 of this article. The rest of the article will continue over the next couple of months. More subjects that will be talked about will cover a paragraph or two about Naturopathic Medicine, Progressive Muscle Relaxation, Relaxation Breathing, Yoga, Conclusion, References and Resources.
Patty’s Ponderings & Miscellaneous Ramblings:
I hope you all are enjoying the series on Complementary Therapy. If any of you have any other ideas for articles such as this, please contact me and I will try to do some research for you and publish the findings in upcoming issues. I have some other articles in my files regarding other health issues and if you wish me to publish them, let me know. I have one item regarding the finding of a new Gene that gives hope for a breast cancer cure. Even though this item along with some of the others that I have hasn’t anything to do with TN, there may be some of you who would like to read about them. Please let me know. Now for a little humor.
THE FOUR STAGES OF LIFE:
1) You believe in Santa Claus.
2) You don't believe in Santa Claus.
3) You are Santa Claus.
4) You look like Santa Claus.
If you think that nobody cares if you are alive, then try missing a couple of car payments!
Have a good month everybody.
Patty
Always remember to forget the troubles that pass your way. But never forget to remember the blessings that come each day.
TNAC (Trigeminal Neuralgia Assoc. of Canada)
BOARD OF DIRECTORS
EXECUTIVE DIRECTORS DIRECTORS:
Marion Guzik; President Mona Leslie
Don Brewer; Secretary/Treasurer Patricia Moyer
John Edwards
CONTACT INFORMATION:
Head Office and Lethbridge Support Group
Marion Guzik
TNAC President
1514 Lakemount Blvd. South
Lethbridge, AB T1K 3K4
Phone: 403-327-7668
EMAIL: mguzik@telus.net
Calgary Contact
Marilyn Najm
P.O. Box 2376
Banff, AB T0L 0C0
Phone: 403-762-3650
EMAIL: najmmar@telusplanet.net
TNAC Newsletter:
Patty Moyer, TNAC Editor
P.O. Box 973
Coaldale, AB T1M 1M8
Phone: 403-345-6262
EMAIL: pgmoyer@telusplanet.net