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
LETHBRIDGE CHAPTER NEXT MEETINGS:
Saturday March 13, 2004
2:00 p.m. @ Senior’s Centre
Saturday April 10, 2004
2:00 p.m. @ Senior’s Centre
IMPORTANT NOTE:
DUE TO THE MANY VIRUS’ THAT ARE FLOATING AROUND ON THE INTERNET, IF YOU EMAIL MARION, PATTY OR TNAC.ORG PLEASE PUT IN YOUR SUBJECT LINE: TNAC INFORMATION.
NOTE:
Is there any special information that you would like to see in upcoming issues of the TNAC News? Such as articles on different treatments, surgeries, etc. Maybe something about dental health while your TN is especially bad? Or a list of some good TN web sites or other reference sites to check out? There is a lot of information available but it would really help me to know what you want to read. Please email Patty with your newsletter input requests & I will see what I can come up with. I need to know what you want to read in the newsletters. I want to make them interesting & informative for everybody. Thanks very much.
Marion’s Desk
There is no entry for Marion’s Desk this issue. Instead, please see the note on the next page regarding Heather Scully. Marion has been under the weather this past month so Marion’s Desk will return next issue. Have a good month.
Marion
DONATIONS FOR FEBRUARY
Zenon Malec, AB
NEW MEMBERS FOR FEBRUARY:
Gladys Redfern, AB
Richard Price, ON
OUR DEEPEST SYMPATHIES TO THE
FOLLOWING MEMBERS FAMILIES:
Belated Sympathy goes out to the Andrew Piller Family of Toronto, who passed away on December 14th, 2003.
Deepest Sympathy goes out to the Heather Scully Family in Ontario. I received word that Heather passed away on February 4th., 2004.
When I received this shocking news, I immediately began to cry. I have not met Heather personally, but over the past year we have corresponded, shared a lot of personal information and a week before her death, Heather emailed me and told me about her dog Jessie, how she held him while he was having his needle to be put to sleep. She expressed how she was going to miss him. I could sympathize with her as just the week before, we also had to have our pet poodle Tawnie, who was over 15 years old, put down.
We shared our pain and I felt that I knew her for a long, long time. Heather was going to become a Support Group Leader for the Ottawa area and we talked about meeting in the summer, even though she probably was having pain, but never mentioned it, she thought about helping others. To me, this signifies that we are one big family, and if something happens to anyone of us, we all share the pain. And so to her husband Michael and her son Jacob, our heartfelt sympathy goes out to you on your loss of a very caring wife and mother. God Bless You.
Marion
MEMORIALS IN MEMORY OF HEATHER SCULLY:
Mike’s Friends and Colleagues at the “Institute for Measurement Standards”, Ottawa, Ont.
Kathleen Clancy, Ottawa, Ont.
The J.E. Spratt family – Perth, Ont.
Patricia Hughes,. Ottawa, Ont.
Michelle Iacovitti, Orleans, Ont.
Mrs. Geraldine Critch, Orleans, Ont.
D.J. Byrne, Orleans, Ont.
The Raniere Family, Orleans, Ont.
Kathryn Jarrett-Ekholm & John Ekholm, Orleans, Ont.
Peter & Yvonne Boudewyn, Orleans, Ont.
Graeme & Norlaine Roderick, Nepean, Ont.
Blessed Kateri Tekakwitha Catholic School Council and Staff, Orleans, Ont.
Don and Evelyn Budd, Ottawa, Ont.
Gordon and Suzanne Meadus, Ottawa, Ont.
Patrick J. D’Arcy, Ottawa, Ont.
John and Barbara Brazeau, Ottawa, Ont.
Staff: Steacie Institute for Molecular Sciences, National Research Council of Can, Ottawa, Ont.
HAPPY BIRTHDAY’S TO ALL THOSE WITH MARCH CELEBRATIONS!
WHAT IS A SUPPORT GROUP?
The most valuable commodity of a support group is pooled experience. Although people in a support group begins as strangers, they quickly find friends, and in a sense, an extended family.
Sympathy and exchange of information with non-sufferers is important but only those who have “been there” can truly identify. Group sessions are a safe place to ventilate feelings and concerns
If it is difficult for you to express your feelings as a sufferer to family and friends, you may find it easier to talk with others who are facing similar problems in a support group. By sharing and learning from their experiences, you may find your problems easier to solve. There is unexpected relief in talking with a fellow sufferer who “really understands”.
Through participation in a support group, you will be better prepared to cope with your pain. Encouragement and moral support is one of the most important parts of belonging to a group of people who understand your pain.
Support groups teach people to be active rather than passive in dealing with the problems of TN. They provide a sense of community. It is important to have a place where you can go, and without saying a word, be accepted and understood.
Montreal Support Group – Feb. 2000
RECIPES
Poor Man's Shepherd's Pie -- An easy dish that's full of flavor! Serves 4. Printed from Allrecipes
1/2 cup
uncooked brown rice
1 3/8 cups water
1 pound ground beef
1 (10.75 ounce) can condensed cream of mushroom soup
1/2 cup chopped
green onion
1 tablespoon Worcestershire sauce
1 teaspoon soy sauce
1/4 teaspoon ground black pepper
Directions
1 In a medium saucepan, bring water and brown rice to a
boil. Reduce heat, cover and simmer for 45 to 50 minutes.
2 Meanwhile, in a medium skillet over high heat, brown
the ground beef and drain fat.
3 Stir the mushroom soup, green onion, Worcestershire
sauce, soy sauce and pepper into the skillet with the beef.
Simmer on medium low heat for 10 minutes. Serve over the rice.
NOTE: I have made this recipe many times now and it’s just great. My hubby loves it. He says it’s ‘comfort’ food. Patty
Easy Pecan Pie
1 package
(4-serving size) instant vanilla or butterscotch pudding
1 cup light or dark corn syrup
3/4 cup evaporated milk
1 egg, slightly beaten
1 cup chopped pecans
1 unbaked 8-inch pie shell
Directions:
Blend pudding mix with corn syrup. Gradually add evaporated milk and egg, blending well. Add pecans and pour into pie shell. Bake at 375 degrees until top is firm and crust begins to crack, about 45 to 50 minutes. Cool at least 3 hours before cutting.
SUPPORT GROUP MEETING NEWS
CALGARY, Alberta:
Monthly meetings will be held on the third Tuesday of each month at:
Confederation Park, Senior Centre, 2212 – 13th Street, N.W., Calgary, Alberta.
The next meeting will be on March 16, 2004 at 7 p.m. Please mark your calendars for this date. For further information please contact Jan Williams at 403-295-0987 or email TNAC Calgary Group at tnac-calgary@hotmail.com
TORONTO, Ontario:
The Toronto Support Group will meet on Sunday, March 21, 2004 at 10:00 a.m. at:
Thornhill Community Centre, 755 Bayview Ave., Thornhill, Ontario.
PLEASE NOTE THE NEW TIME. Mark you calendars for this date. For more information please call 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 Next Lethbridge Support Group meeting will be on Saturday, March 13, 2004 at the :
Lethbridge Senior Centre, 500 – 11th Street, South, Lethbridge. Alberta
Please mark you calendars for this date.. For more information please contact Marion Guzik at 403 – 327-76689 or email mguzik@telus.net.
SUPPORT GROUP NEWS:
CALGARY:
Chris Goodman and Sandy Rivey are both doing fine since their respective MVD operations.
LETHBRIDGE:
Zennon Malec is doing just great after his MVD on January 13th. He reported on his operation and is very pleased. No more pain.
Our quilt raffle tickets are selling quite nicely. We will be having a table set up at Homestead Village on March 19 & 20 and on April 2 & 3. If you have any ideas on other places to set up a raffle sale table, please contact Marion - we can’t use the big malls as the insurance rates are very high.
TORONTO:
Sandra Arangio is having her MVD on Feb. 24th. Our best wishes Sandra.
A Striking Back Book was donated to the Thornhill Public Library.
A TRIP DOWN MEMORY LANE:
By: Marion Guzik, President of the TNAC and Lethbridge Support Group Leader
It all began one evening after I had a severe attack of TN while attending a lecture with two friends of mine. The next day, my friend Rene, got on the net to search out anything we could find on TN. Luckily, she came across the Trigeminal Neuralgia Association of New Jersey (now of Florida) and I got in touch with them and a warm relationship developed.
Sherri Gallant, a reporter with the Lethbridge Herald interviewed me and on June 1, 2000, she published an article titled “Trigeminal Neuralgia Support Group Starting Up”. I thought I was the only one with this terrible disorder, but soon realized that I wasn’t alone, that many more people out there were also suffering from TN. The number of calls I received from Alberta and B.C. was overwhelming.
June 11, 2000 was our pilot Support Group Meeting and was held in my home. There were 8 people with TN and 3 family support people. After this meeting, one of our members, Bill Groenevelt, now deceased, gave my name to Dr. Anthony Kaufmann, a neurosurgeon in Calgary and now of Winnipeg, and that started a liaison.
On Oct. 2, Dr. Kaufmann gave us our 1st lecture entitled “Can Trigeminal Neuralgia Be Conquered”, which gave us a real send off. I was then invited to attend the 3rd National Conference of the TNA in Pittsburgh. On October 25th, I journeyed on a remarkable and eye-opening experience. There were about 300 of us there. It was at this time, Dr. K and I discussed forming a TNAC, but things didn’t work out as planned.
In 2001, it became evident that my home was no longer adequate so I set forth to find us a new home. We then met at the Lethbridge Police Station, and the Heart and Stroke Office. I wanted a permanent home for us so I wrote to the Lethbridge Senior Centre asking them for permission to meet at the Centre at no cost to us, as we had no money and were a Non-Profit Organization. Permission was granted. As of April 2001, our new home has been the Lethbridge Senior Centre, 500 - 11th Street, South, and we thank them for graciously allowing us the use of one of their rooms. On March 1st, our TN News was born. Thanks to Patty who does such a great job in setting the newsletter up and is now going to be our Webmaster for the TNAC website.
On April 21st, our first guest speaker was Dan Richenhaller, pharmacist from the Northside Safeway Pharmacy, who gave us a talk on our medications. This was a very interesting talk as we learned about our medications and how they interact with one another.
Our next guest speaker was on May 12th and Dr. Liana Harper, chiropractor from Harper’s Chiropractic Health Centre in Coaldale, AB. Dr. Liana’s topic was “Upper Cervical Procedure” and we learned all about our spine and about chiropractic care.
On September 9th, Dr. Maurice Nicolson, Hawaii, gave us a presentation on the Gamma Knife and TN. The Gamma Knife is now available in Winnipeg, Manitoba.
On January 12th, 2002, we had as our guest speaker, Dr. Gary Stauffer, an orthodontist, who spoke to us on dental care.
March 9th, 2002 Dr. Howe Leam of the Haig Clinic, addressed us on the topic of Alternative Medicine, that being “Acupuncture” and at our
May 11th meeting we had the pleasure of Sheila Shenton speak to us on “How to Cope with MS”. Her address was very enlightening.
In June our group began thinking about starting up a TN Group in Canada. A lot of hard work was involved in order to get our Incorporation. However, this was accomplished in November, 2002.
In January of 2003, our little group in Lethbridge, set out and mailed over 375 letters to all of the TN patients registered with the TNA. Patty also emailed over 400 newspapers.
In February, 2003, we received our status as a Charitable Organization. What a glorious day that was for me and our group.
Since that day, I have been extremely busy, but all has been worthwhile.
June 7th 2003 was a highlight in Lethbridge, when Dr. Ken Casey, Pittsburgh, Pa. gave us an excellent presentation “Trigeminal Neuralgia, 2003,” An Update. Then on
June 28th, another highlight. Dr. Anthony Kaufmann, Winnipeg, Man. journeyed to Calgary and again an excellent presentation on “Controversies in Treatment of Trigeminal Neuralgia” and “The Introduction of Canada’s First Gamma Knife”. Dr. Kaufmann is our Medical Advisor for the TNAC.
Thus dear Friends, is how the Trigeminal Neuralgia Association of Canada had its beginning, and I do hope and pray that it will continue to help those with TN and their families.
Marion Guzik,
Pres. TNAC, and
Lethbridge Support Group Leader
AN INVITATION TO TNAC MEMBERS: (continued from February issue)
If you decide to write Mr. Lawhern regarding this, please remember that he is from the U.S. so please check with your own insurance company and/or HMO (if you have one in your province) regarding their rules and regulations before you make any decisions.
To TNAC Members:
Of concern to facepain patients, is the difficulty we all experience in being heard by the medical professionals who treat us. Some doctors are not notoriously good listeners, and all medical professionals are rushed by rules of practice enforced by insurance companies and HMO's. Thus patients, their families, and occasionally even medical professionals, may benefit from an opportunity to correspond with someone who offers time and expertise to help sort out symptoms and issues either before or after a doctors' appointment. By knowing what questions to ask, you can make your time with a doctor more productive in the management of many medical conditions. Chronic face pain is no exception.
Readers of this newsletter are invited to correspond with Richard A. "Red" Lawhern, Ph.D., formerly a Board member, Webmaster and medical literature search expert for the Trigeminal Neuralgia Association in the US. Dr. Lawhern is the spouse of a patient who has managed TN with atypical symptoms, for over eight years. During that time, he has corresponded with over 2000 pain patients, and edited three chronic pain websites. Although not a medical doctor, (he is technically trained in engineering and operations research), he has written widely in the field of chronic facepain, and donates his time to aid patients in gaining mastery and management over their pain conditions. All are welcome by email, via lawhern@erols.com.
(The following article is reprinted here with permission from R. A. Lawhern, Ph.D)
CHOOSING TREATMENTS FOR TRIGEMINAL NEURALGIA: Part 3
Continuing with the Chapter on “What Other Medical Conditions Do You Have?
It is also important for trigeminal neuralgia patients to understand that more than one disorder can be involved in their symptoms -- and the more "atypical" their symptoms are of classic TN, the more this may be true. Especially if you have pain in other areas of your body or head at the same time, your physician should consider other disorders, either "instead of" or "in addition to" TN, that may require different treatments. Such disorders may include the following:
* glosso-pharyngeal neuralgia (involving a different cranial nerve than does TN)
* greater or lesser occipital neuralgia (again, affecting yet another nerve)
* facial tendonitis of several types (inflammation of a small tendon)
* temporo-mandibular joint disorder (misalignment or damaged structure in the joint and its closely surrounding tissues)
* abscessed tooth
* a slow growing tumor close to the trigeminal nerve
* acoustic neuroma (a tumor of the auditory nerve)
* growths on or misalignment of the upper (cervical) spine, with referred pain in the face.
For further discussion of several of these syndromes, the reader may find Pain Disorders That Are Confused With TMJ to be a useful starting point. These and other syndromes are also addressed by several of the Organizations linked from the Trigeminal Neuralgia Association homepage.
Some conditions such as anesthesia dolorosa or some forms of hearing loss can result from previous treatments of TN itself, particularly if you have had surgeries. Some procedures reduce pain by damaging the trigeminal nerve in selective ways. Over time, the body may compensate for the damage by regenerating the nerve, causing a return of the pain. It is understandable that even controlled damage can become cumulative. Patients who have already had multiple surgeries have a noticeably lower probability of success in repeated procedures. For such patients, on-going treatment by a pain management specialist may be helpful.
What is your age and physical condition?
Historically, some doctors have discouraged older
patients from having microvascular decompression surgery, out of
a concern that risks of serious side effects may be higher for
such patients than for younger people. However, opinion on this
area of practice seems to be changing. A 75 year old patient who
power-walks a mile, three days per week and who has low
cholesterol, may be a better candidate for inter-cranial surgery
than, say, a patient of 50 who has very high blood pressure and
shows signs of developing angina or respiratory problems.
Likewise, the prospect
of taking anti-convulsive drugs for the rest of one's life may
seem highly unattractive to a physically active 30 year old who
is concerned about potential side effects on memory, mental
clarity and physical balance. Some younger patients may press
for early surgical treatment which has a probability of a
long-term, drug-free outcome -- even knowing that there is some
possibility of an unsuccessful result or lasting negative side
effects. Some physicians are coming to see this preference as a
reasonable one, if the patient is fully informed of the possible
negative outcomes of surgery.
How long you have
had pain?
Yet another factor in selecting treatments seems to be
in the very early stages of research. Some reports of surgical
outcomes (see "Neurovascular Decompression - Procedure of
Choice?")* indicate that after pain has lasted for a few years,
the probability of success for surgery seems to be somewhat
lower than if surgery is done more immediately after pain
begins. One possible explanation for such effects would be that
the compression that creates TN pain may also gradually
create abnormal circuits in parts of the nerve that are remote
from the site of the compression. By this explanation, if the
original compression is removed, the abnormal circuitry may
continue to cause pain. While this observation has not yet been
conclusively verified, it may prompt greater willingness by
surgeons to provide treatment after relatively shorter periods
of drug treatment, if the patient is not receiving adequate pain
relief from drugs.
* Neurovascular Decompression is another name for Microvascular Decompression (MVD).
If you are an older person who no longer drives a car or whose driving may be restricted by your pain, it may not be easy for you to travel 400 miles to speak with a doctor who has special training in the treatment of facial neuralgias. The same can also be true for younger people, of course. Such practical limitations can affect the choices in treatment that you feel able to explore. Especially for patients whose ability to travel is restricted, it is vital that you or a member of your family do as much as you can to learn about your options -- and the care providers who deliver such options -- as early as you can. This page may be part of your learning process. See the page menu above, for other materials of the TN Association that may also be helpful.
Beyond this initial research, it will be important for you to find an appropriately qualified doctor as close to you as possible. The Trigeminal Neuralgia Association and its affiliated support groups and network contacts can assist you in the search.
What is your relationship with your doctor?
If you have a strong and trusting relationship to
a medical care giver who has correctly diagnosed your TN pain,
then you may wish to continue that relationship as you seek
treatment -- even if your doctor or dentist refers you to other
practitioners who have specialized training and information.
Your primary doctor can "sanity check" and help you evaluate the
suggestions you receive from others. It is also important to
realize that you are more likely to have successful outcomes if
you are seen by professionals who routinely treat other patients
with similar disorders. Just as you would not take a case of
skin cancer to a chiropractor, neither is it wise to seek TN
treatment solely from a family practitioner who lacks recent
training in neurology. Likewise, if you choose one of the
surgical treatment options, your outcomes will likely be better
with a neurosurgeon who specializes in treating TN and does many
similar procedures per year, than with a general neurosurgeon
who treats all manner of neurologic problems and does only a few
procedures of the type recommended for your case.
…………..To Be Continued in Next Issue……………...
SOMETHING TO THINK ABOUT:
People spend a lifetime searching for happiness; looking for peace. They chase idle dreams, addictions, religions, even other people, hoping to fill the emptiness that plagues them. The irony is the only place they ever needed to search was within.
Ramona L. Anderson
Patty’s Ponderings & Miscellaneous Ramblings:
Well I don’t know about everybody else but I’m ready for spring to arrive. I can’t wait to be able to go ride my horses and go camping and fishing. I return to my seasonal job on March 8 for the summer. I’m really looking forward to that also.
I don’t have much to report on this month. I’m slowly working on things for the web site development and my learning curve is improving.
I hope everyone is doing well and not in too much pain. Have a good month.
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
Marion Guzik; President
Don Brewer; Secretary/Treasurer
DIRECTORS:
Mona Leslie
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: president@tnac.org
TNAC Newsletter:
Patty Moyer, TNAC Editor
P.O. Box 973
Coaldale, AB T1M 1M8
Phone: 403-345-6262 EMAIL: editor@tnac.org