Trigeminal Neuralgia Association of Canada
Lethbridge Chapter
EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION
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.
NEXT MEETINGS....
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Saturday June 7, 2003-PRESENTATION |
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2:00 p.m. @ Senior’s Centre |
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Saturday July 12, 2003 |
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NO MEETING – SEE NEWS FLASH |
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
NEWS FLASH!!!!!!!!
Dr. Casey, co-author of our handbook ‘Striking Back’ will be coming to Lethbridge on Saturday June 7, 2003. Please keep this date open. Because of this, our regular scheduled meeting on June 14th is cancelled. See announcement in this issue.
Special Notice: Member’s Only:
Our first General Meeting will be held on August 9th, 2003 at 2:00 p.m. at the Lethbridge Senior Centre, 500-11th Street South, Lethbridge, Alberta. Discussions regarding goals and the election of officers for the next General Meeting which will be held in June 2004. Please R.S.V.P. to Trigeminal Neuralgia Association of Canada, 1514 Lakemount Blve., Lethbridge, Alberta T1K 3K4 by July 30th, 2003.
“MEMORY FUND” New Fund Starting
Do you wish to thank someone who has made a difference in your TN experience? Would you like to make a gift in memory of a loved one or to honor an anniversary or a birthday? The TN Association of Canada will now accept contributions or donations in order to recognize these special people.
Contributions are considered a tax-exempt charitable deduction and Income Tax Receipts will be issued.
A special note will be sent to the person being recognized or their family to notify them of the gift to the Memory Fund. The amount of the gift will not be specified unless requested.
The contribution will be noted in a special section of the monthly newsletter stating: “Gifts were made in memory of ….. by …..” or “Gifts were made in honor of ….. for a successful surgery”, etc.
NEW MEMBERS FOR THE MONTH OF APRIL 2003
ALBERTA ONTARIO
Barbara Bienert Barbara Grossman
Kathleen Sanderson Ellyn Freedland
Valerie Marsh Laurie Simon
Marilyn Martin
Donations Received:
Lois Henry
Barbara Bienert
Edie Little
Striking Back Sales: 2
Telephone Contact Persons
ONTARIO:
Carolina Crespi 416 444-7600 - carolinacrespi@rogers.com
HAPPY BIRTHDAY’S TO ALL THOSE WITH JUNE CELEBRATIONS!
Belated Congratulations to Fred and Mona Leslie on their 40th Wedding Anniversary – May 18th, 2003
Notes From Marion’s Desk:
I have been extremely busy this past month so I hope you will all bear with me if your emails have not been answered yet.
The presentation in Lethbridge with Dr. Casey on June 7th, 2003 has all been finalized and the posters are now being distributed. Many thanks to all that are helping to get them out. The Calgary presentation with Dr. Kaufmann on June 28th, 2003 is also on target and I want to thank the people in Calgary for getting their posters out. However there are still a few things that have to be done and time is going by so fast.
I have included both of these posters in this newsletter to notify the out of City and Town members of these events. Hope to see you there.
We have received our Income Tax Receipts so Don will be busy getting these receipts out to you.
It was nice to see Lorraine Hansen and her daughter Valerie from Taber at our last meeting. It was Mother’s Day weekend so many apologies came in that they were not able to attend. A video that was taped from the Northwest Hospital, Gamma Knife Centre, entitled “Gamma Knife Surgery for Trigeminal Neuralgia”, was shown. The video featured Betty and Raymond Trudeau of Abbotsford, B.C. who are members of our Association. Both Betty and Raymond have had the Gamma Knife procedure and are doing very well. It is very, very rare that a husband and wife should have TN at the same time. Great to see you both on the video. Thank you for sending us this tape.
I am pleased to report that every day I am getting inquiries about the TNAC. We are growing and steadily establishing our Association.
Until next month, have a pleasant and pain free month and if you can, we would love to see you in June at Dr. Casey’s presentation in Lethbridge and Dr. Kaufmann’s in Calgary.
Marion
RECIPES...............
Recipe from Nora Kudrenecky – Kitchener. This is an old favourite of Nora’s
QUICK AND EASY MEATBALLS:
In a large pot throw in a couple of tablespoons of vegetable oil. Slice a large sweet onion, throw this in the pot with the oil and stir around over gentle heat until the onions are soft. Then chop, or slice (I prefer sliced) a green pepper and a red one too if you have one. Dump this in with the onion-stir around a bit then add a tin of tomato soup – gently stir it all around until well blended. You could add a bit of water just to get the remaining soup out of the can. Then add as many meatballs as you have or would like. Throw in a bay leaf -cover – Cook on low heat while you relax with a drink. Serve with parslied potatoes or drainpipe pasta tossed with olive oil and parmesan cheese.
Thanks Nora! This sounds real yummy and easy to make.
Impossible Cherry Pie From Patty’s Kitchen
1 cup milk
2 Tablespoons soft butter or margarine
1/4 teaspoon almond extract
2 eggs
1/2 cup Bisquick
1/4 cup sugar
1 (21 oz.) can cherry pie filling
STREUSEL:
2 Tablespoons firm butter
1/2 cup Bisquick
1/2 cup brown sugar
1/2 teaspoon ground cinnamon
Preheat oven to 400 degrees. Grease 10-inch pie plate. Beat all ingredients except pie filling and streusel ingredients in blender for 15 seconds. Pour into pie plate. Spoon pie filling evenly over top.
Bake 25 minutes. Then, top with streusel. Bake until brown, about 10 minutes. Cool. Refrigerate.
Jokes and Silliness:
A dietitian was once addressing a large audience in Chicago. “The material we put into our stomach’s is enough to have killed most of us sitting here, years ago. Red meat is awful. Soft drinks erode your stomach lining. Chinese food is loaded with MSG. Vegetables can be disastrous, and none of us realizes the long term harm caused by the germs in our drinking water. But there is one thing that is the most dangerous of all and we all have, or will, eat it. Can anyone here tell me what food it is that causes the most grief and suffering for years after eating it?”
A 75 years old man in the front row stood up and said, “Wedding Cake”!
A Worthwhile Quote:
"People are unreasonable, illogical, and self-centered.
Love them anyway.
If you do good, people may accuse you of selfish motives.
Do good anyway.
If you are successful, you may win false friends and true enemies.
Succeed anyway.
The good you do today may be forgotten tomorrow.
Do good anyway.
Honesty and transparency make you vulnerable.
Be honest and transparent anyway.
What you spend years building may be destroyed overnight.
Build anyway.
People who really want help may attack you if you help them.
Help them anyway.
Give the world the best you have and you may get hurt.
Give the world your best anyway." Author: Mother Teresa
Presents a lecture for the general public and medical/dental professionals:
LECTURER:
Dr. Kenneth F. Casey, M.D. Pittsburgh, PA, U.S.A.
Medical Board of Directors, Trigeminal Neuralgia Association, U.S.A.
Co-Author of Our Handbook “Striking Back”
Hosted by:
Trigeminal Neuralgia Association of Canada
1514 Lakemount Blvd., Lethbridge, Alberta, T1K 3K4
Marion Guzik, President, SGL
WHEN: SATURDAY, JUNE 7TH, 2003
2:00 p.m. – 4:00 p.m.
WHERE: LETHBRIDGE SENIOR CENTRE
500 – 11th Street, South
For more information please contact Marion at TNAC (403) 327-7668
OR
Lethbridge Senior Citizens Organization (403) 320-2222
A Sponsor of TNAC
TRIGEMINAL NEURALGIA ASSOCIATON
OF CANADA
Presents a lecture for the general public and medical/dental professionals:
“CONTROVERSIES IN TREATMENT OF
TRIGEMINAL NEURALGIA”
and
“THE INTRODUCTION OF CANADA’S
FIRST GAMMA KNIFE”
Hosted by:
Trigeminal Neuralgia Association of Canada
1514 Lakemount Blvd. Lethbridge, Alberta, T1K 3K4
Marion Guzik, President.
Lecturer:
Dr. Anthony Kaufmann, MD. BSc.(Med.),MSc.FRSC
Director, Centre for Cranial Nerve Disorders,
Winnipeg, Manitoba.
WHEN: SATURDAY, JUNE 28TH, 2003
2:00 p.m. – 4 p.m.
WHERE: CLARA CHRISTIE THEATRE,
1403 29TH Street, N.W.,
Foothills Medical School, Calgary, AB.
Refreshments
Please use Parking Lot 14
For more information, please contact Bert or Patti (403) 287-2421
or
Marion , at TNAC, Lethbridge
(403) 327-7668
TN STORIES:
MY EXPERIENCE WITH TN, by Peter Miller, Oakville, Ontario:
Like Kathy Somers in the April 1, 2003 issue of "The TNAC News" I have had TN for about 6 1/2 years. As my story will show, I think I have really been through the mill with this condition. Most everything has been tried on me, with varying success. To begin with I'm going to make four points, which I believe to be vital for one's help and self-knowledge.
1. Quite long ago, soon after the book became available through the TN Association in the U.S.A., they sent me a copy of "Striking Back" by Kenneth F. Casey, M.D. It became a real manual for me. I read it all through & later consulted it whenever needed for reference. For anyone with TN, I consider the book absolutely essential.
2. Regardless whether the treatments were successful or not, all the doctors giving them, without exception, were as helpful as could be.
3. My experience has given me the conclusion that anyone having a long-term or life-long condition like TN must necessarily, in self-defense, learn to live with it: taking all the available treatments & medications but, regardless of their effect, learning to accept the condition's existence as a part of life. As anyway there is no real alternative to doing this, one's health-happiness depends on one's philosophical attitude along these lines.
4. All along the way, I kept fairly detailed notes of my own experiences. These have proved useful. For example my present story to you is based on them. By that I mean that these are only extracts & that the original notes are voluminous & much more detailed. Therefore I recommend that all serious patients take their own notes & keep them on file.
OK. The story. Back around early 1997 I began to become aware of an occasional pricking sensation in my left cheek & jaw. This was at least irritating, at worst painful. I asked a couple of general doctors what could be wrong but they had no idea so one of them suggested that this might be a dental problem. Here came my first break. I asked my dentist. He did not know the cause but he wisely referred me to a Professor of Oral Pathology in the nearby hospital. The Professor diagnosed that I had given "a very clear history of trigeminal neuralgia" for which "the treatment of course is by Tegretol." He started me on this & also ordered a CT Scan (which showed nothing special).
My family physician prescribed Tegretol twice a day totaling 800 mg p.d., supplemented if necessary by Tylenol or Tylenol 2 with Codeine although the latter caused constipation. If & when the pain made it very hard to eat I should drink "Boost" or "Ensure."
In September 1998 I saw a neurologist. He changed my prescription to 600 mg per day of Tegretol CR (Controlled Release). This neurologist commented that probably I would be on this medication for the rest of my life although variations might occur through trial & error; & that the treatment was wholly symptomatic. Importantly he added that triggering the pain does not damage the nerve or worsen the condition. He said that the condition has unknown causes. It is age-related, due to a deterioration of the nerve, which breaks down with age & sends abnormal pain impulses. It can hopefully be controlled by anti-convulsant medications, which stop the brain cells from being dramatically overactive. The condition tends to wax & wane with further aging, or it can become more persistent. It can become resistant to medication, in which case various types of surgery can be given by a neurosurgeon.
In January 1999 I reported to my family physician that I had been unable to eat solid food for ten days. He replied that there is no problem with a liquid diet -- some people are on this permanently. (I did not consider this comment to be significantly helpful!). At this stage I could increase the dosage of Tegretol CR from 600 mg to 800 mg per day. If anything further like surgery was wanted this would be at the patient's initiative & it would depend on how much the ailment was interfering with his/her lifestyle. If desired, this would probably take months to arrange, "as the condition is not life-threatening & the neurosurgeons are very busy with more important operations". (Again, not very helpful!!)
In January 1999 I again consulted the neurologist, who at my request referred me to a neurosurgeon for surgery. Also he suggested that I should take Tegretol with Neurontin for three days & then phase out the Tegretol completely, thereby switching to Neurontin. This switch was very unsuccessful so because of the pain I reverted to Tegretol.
In April 1999 I had a first discussion with the neurosurgeon, who fully explained the possible procedures to me. I asked for the balloon compression. He agreed & later gave it to me in June 2000. At this time I was taking 1,200 Tegretol CR per day & soon after up to 1400 mg per day.
In June 1999 the balloon compression was given & was easy enough. I think it was done with a general anesthetic. The initial results were certainly helpful. The pain was reduced or stopped.
In August 2000 I had another discussion with the neurosurgeon. He said there was no problem in continuing Tegretol for the rest of a lifetime. Many people do, for epilepsy. Any increase from 1200 mg p.d. is up to the patient to deal with. It may be acceptable to go as high as 1800 mg per day before checking with the doctor. It is also possible to repeat the balloon surgery, more than once. In fact he had just done it on a patient for the fourth time. The length of time the balloon is left operative can be increased although this affects the numbness of the cheek. At about this time he prescribed a monthly injection of B12 to supplement a perceived deficiency. Also at some point around then he prescribed some Epival to form part of my package of medications.
Meanwhile the beneficial effects of the balloon compression gradually wore off until after about eight months I was back to square one. The neurosurgeon therefore agreed to do it for a second time. Of course there was no guarantee & unfortunately from the start this second try was not successful.
In August 2001 I personally delivered a letter to the neurosurgeon stating my case & saying that I did not want to spend the rest of my life on heavy medication. I therefore formally requested him to give me an MVD (Microvascular Decompression). I knew the risks but was willing to take them. At this time I was taking daily 2400 mg Neurontin, 1,000 mg Epival, & 800 mg Tegretol. The neurosurgeon duly gave me the MVD in September 2001. The surgery took about three hours & I was in hospital for about five days.
In November 2001 I regretfully had to tell the neurosurgeon that the MVD had not been successful & that the pain had come back to hit me full strength. Therefore as a last surgical resort he arranged for me to fly to the University of Pittsburgh to receive the Gamma Knife. OHIP generously funded the procedure (but not the incidental expenses, which were for my own account). I was received there graciously & the procedure was an interesting experience for me. Unfortunately however it was not successful. When the university doctor later sent me a questionnaire I had to reply to this effect & he sent me a kind letter of reply.
Since then I have had no choice but to resume work with the various medications, which have been prescribed in different combinations & doses. Some experiments were unsuccessful but others worked out well. I was told that the several medications involved --Neurontin, Tegretol, & later Oxycontin each attacked the neuralgia in different ways & the right choices between them must somehow be found. Oxycontin was a good example. It seemed very successful so the original 30 mg p.d. was reduced to 20 mg & then to 10 mg & up again to 30 mg, where it now is. Until recently my daily dose has been 900 mg Tegretol CR, 3200 Neurontin, & 30 mg Oxycontin.
However this very large total dose has had the effect of seriously impacting on my mental & physical energy. This caused me much discomfort & anxiety. Therefore a second neurologist experimentally reduced the Tegretol gradually by 200 mg p.d. (Week 1) & another 200 mg (Week 2) & a third 200 mg (Week 3). At present (mid-April 2003) the first two weeks have been notably successful, with greatly increased mental & physical energy. I have not yet quite decided whether to proceed with Week 3. If I do, & if significant pain results, there is always a safety net as I can withdraw back to Week 2 again.
I realize that this story has been long & complex. However it has seemed worth telling as it really goes from A to Z in surgery & calls in at quite a few ports of medication along the way. I hope it may prove helpful to some of your readers. In any event I would draw their careful attention to the basic points that I set out at the beginning of this essay.
Best of luck to all your readers!
Peter Miller; 2180 Marine Drive, Suite 1808
Oakville, Ontario L6L 5V2 Email: pmiller@spectranet.ca (Permission granted to publish name and address)
FACIAL PAIN by Keith Ennis
The pain in my left lower jaw started in 1985 shortly (within one week) after I had an injection in the back of my jaw to freeze a tooth for a deep filling. I had an unusual feeling in the jaw when the dentist inserted the needle.
Shortly after, I complained to my dentist of pain in my jaw. He performed a root canal on the lower left 2nd premolar.
When this did not relieve the pain I was sent to an oral surgeon who suggested that I had TN. My former neurologist arranged for a CAT scan of my head which turned out negative.
Early on, my pain went in cycles; usually 4 or 5 months of pain followed by 4-5 months with little or no pain. The pain was and still is usually centered around my lower left 2nd premolar although I have had periods where the pain also affects my tongue, the side of my head, or the side of my face. Usually only one area is affected at any one time. When my lower left 2nd premolar is affected the gum along the inside of that jaw is always swollen. I use the degree of swelling as an indicator of the severity of the attack
My facial pain is almost entirely limited to periods when I am eating, talking or brushing my teeth. At other times I have almost no pain. The pain is worst when I start eating and if I persevere, gradually lessens with determined chewing until after a few minutes it disappears.
I am a runner and during bad periods the pain is bad when I first start to run but after the first half mile it has eased off and I am usually pain free after one mile.
My pain is completely controlled by Tegretol, which I take as needed, now usually 1/4 or 1/2 of a 200 mg pill twice a day.
There are no noticeable side effects from this dosage. I have had a prescription for Baclofen for several years but have used it only twice.
There were two occasions several years ago while off medication when, for the first time, I had repeated electric shock jabs in my left cheek. The first was only brief and the second stopped after 40 minutes following 100 mg of Tegretol and 1/2 pill of Baclofen.
In 1997, my dentist, who apparently feels some responsibility for my condition, suggested I see an neurosurgeon. The neurosurgeon offered to perform Balloon Rhitzotomy but I was persuaded by my neurologist to wait until such time that 600 mg of Tegretol a day was ineffective.
My neuralgia is now pretty well under control as witnessed by the fact that I have only seen my neurologist three times in the past seven years. My family doctor prescribes my Tegretol as needed and my life has returned to a generally pain-free state.
May 16, 2003
NOTE: TN Stories….
If any of you submit your TN stories to the newsletter for publication, please include the following: A) a note giving your permission to publish your address, phone, email. B) a sentence stating that you would welcome other members to contact you. Otherwise, we will publish only your name with your article. Thank you.
NOTE to all Support Group Leaders:
If you wish to have any of your local Chapter’s news or events printed in the TNAC News, please email it to Marion and it will be included in the next issue. We need you to become a part of this newsletter so please help us out.
Patty’s Ponderings and Miscellaneous Ramblings:
Well another month has come and gone so darn quickly. This year seems to be just flying by. My oldest grandson phoned me a few nights ago and gave me his “Santa” list already!
As you all know, everyone here has been very busy with getting everything organized for the two upcoming Presentations, here and in Calgary. Hope you all can attend at least one of them. Marion has worked super hard with all the coordinating and such. A big hats off to her efforts.
For this month, I have some silly laws that still remain in the law books - but I’m sure that most aren’t really ‘enforced’ very strictly! Enjoy and I’ll talk with you again next month.
In Texas:
It is illegal to drive without windshield wipers. Curiously, it doesn't specify that you need a windshield, but you must have the wipers!
It is illegal to take more than three sips of beer at a time while standing.
It’s illegal for a person to shoot a buffalo from the second story of their hotel. Apparently, it’s okay from the first story!
In Rhode Island:
It's a misdemeanor to keep more than 11 inoperable vehicles in front of a house.
In Pennsylvania:
You may not sing in the bathtub. The good news is that this statute does not specifically ban singing in the shower.
All fire hydrants must be checked one hour before all fires.
A woman isn't allowed to cut her own hair without her
husband's permission.
In Michigan:
You may not swear in front of women and children.
In Indiana:
No one may catch a fish with his bare hands.
In Florida:
A special law prohibits unmarried women from parachuting on Sunday.
In North Carolina:
Elephants may not be used to plow cotton fields.
Fights between cats and dogs are prohibited. (Hmmm, I wonder - has anybody ever explained this to them???)
Have a great month,
Patty
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 Calgary Contact Info:
Marion Guzik Marilyn Najm
TNAC President P.O. Box 2376
1514 Lakemount Blvd. South Banff, AB T0L 0C0
Lethbridge, AB T1K 3K4 Phone: 403-762-3650
Phone: 403-327-7668 EMAIL: mguzik@telus.net 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