The TNAC News
Volume 4, Issue 7
July 2004
Inside this Issue |
Notices |
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Marion’s Desk Support Group News Medical News Member News From Our Members Recipe My TN Story Patty’s Ponderings
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If you haven’t paid your yearly Membership fees they are due now. Please send your cheque for $25 to: TNAC, Membership Fees 1514 Lakemount Blvd South Lethbridge, AB, T1K 3K4 |
DonationsDonations to the TNAC are gratefully received. Your monetary support helps defray the cost TNAC News, copies, supplies, postage etc. Please make your cheque payable to Trigeminal Neuralgia Association of Canada and mail it to: 1514 Lakemount Blvd South Lethbridge, AB, T1K 3K4. Income tax receipts will be provided.
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Marion’s Desk |
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I was privileged to attend and present Dr. Zelma Kiss with a plaque at her presentation in Calgary, on June 19th, 2004. Dr. Kiss gave an excellent presentation to us, and Jan Williams, Support Group Leader, has summarized it for the Newsletter. Thanks again Dr. Kiss and also for the very generous donation given to our Association. John Edwards has just returned from his Gamma Knife surgery in Winnipeg. He is feeling so good... Marilyn Najm had heart surgery and had some complications but is back home now and hopefully on her road to recovery. We wish you both the best. To all our members that might have had surgeries, and are unbeknown to us, we also wish you the best. I have had a request from one of our members that has Maxillofacial Neuralgia to contact her or the TNAC. She is suffering with constant pain in her right cheek nerve and would like to talk to anyone with the same condition. Please contact - Eleanor Wetherelt, P.O. Box 604, Nanton, AB, T0L 1R0, PH: 403-646-2887, or the TNAC. - - Thanks members. My apologies to all you Fathers in our Association. I inadvertently forgot about Fathers Day, so I do hope that you all had a wonderful day. Please forgive. Hoping you all have a wonderful and pain free summer. Marion
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Support Group News |
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Calgary, AlbertaMonthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on July 13th, 2004, at Confederation Park Senior Centre. Please mark your calendars for this date. Contact Jan Williams at 403-295-0987 for more information or email
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Lethbridge, AlbertaThe Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, July 10, 2004 at the Lethbridge Senior Centre, 500 – 11th Street, South, Lethbridge, Alberta. Please mark your calendars for this date. For more information please contact Marion Guzik at 403-327-7668.
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Toronto, OntarioThe Toronto Support Group will meet on Sunday, July 25th, 2004 at 3:00 p.m. at the Thornhill Community Centre, 7755 Bayveiw Ave.,Thornhill, Ontario. Please Note New Time and mark your calendars for this date. For more information, please contact Dana Lavrence at 905-886-7563.
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Medical News |
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Trigeminal Neuralgia and other Facial Pains: Diagnosis and Treatment The following are notes taken from this seminar presented on June 19, 2004 By Dr. Zelma Kiss, Functional and Stereotactic Neurosurgeon, Foothills Hospital University of Calgary, CIHR Clinician-Scientist, AHFMR Clinical-Investigator
Anatomy The trigeminal Nerve is one of a group of 12 nerves called the cranial nerves. The Trigeminal Nerve is the 5th cranial nerve and is the one responsible primarily for sensation to the face and the muscles of chewing. This nerve leaves the brain stem and travels through a tunnel in the skull called Meckels cave. There, at the ganglion it splits into three “arms”, the ophthalmic (to the eye, forehead and nose), the maxillary (cheek) and the mandibular (jaw).
Trigeminal Neuralgia (TN) TN is characterized by sudden, severe, one sided, lancinating superficial pain. In 95% of people it appears on only one side of the face. Each pain is short and can be precipitated by a trigger – like a light touch to a certain area of the face. The pain is so intense that people often recall exactly when they felt the first symptoms. The diagnosis is made on history (the description of the pain) and the neurological examination is normal. TN annual incidence (meaning new diagnosis) is 2.7 – 5 people of 100,000. It can be familial and can be associated with Multiple Sclerosis. An MRI is only necessary for those patients who are young (under 60) or who have some other neurological symptoms like numbness, weakness or hearing loss. It is believed that TN is caused by irritation of the Trigeminal nerve by a blood vessel sitting on it at its origin from the brain. It can also result from the loss of the nerve’s protective covering in diseases like MS. Treatment Patients are usually treated first with drugs. The ones used are anti-seizure drugs and it is believed that these drugs alter the way the brain transmits pain signals. Drugs include: Carbamazepine (Tegretal) Oxcarbazepine (Trileptal) Gabapentin (Neurontin) Phenytoin (Dilantin) Baclofen Surgery If the drugs are ineffective or if the side effects become bothersome, then surgery is an option. Surgical options can be classified in one of two ways: Nerve preserving or nerve damaging. Nerve Preserving Surgery The Microvascular Decompression or MVD involves opening the skull and exposing the nerve. The surgeon locates the blood vessels near the nerve and places Teflon padding between the nerve and blood vessel. The MVD has a success rate of 85-90%. After 15 – 20 years about half the patients will have the return of some pain. This is major surgery and the risks include death (up to 1% in some reports), stroke, hearing loss, facial nerve weakness, meningitis, cerebral spinal fluid leaks, and seizures. Patients must remain in the hospital for 3 to 5 days and recovery can take about 2 months.
Nerve damaging Procedures
Neurectomy
– the nerve is cut Frasier Procedure – the nerve is cut at the ganglion. This procedure is very seldom done anymore. Percutaneous procedures are those that are done through the skin. The surgeon slides a needle into the skull base so that the tip lies near the Trigeminal nerve’s ganglion.
Glycerol or alcohol - is placed on the nerve and left there to chemically damage the nerve
Balloon compression – a small balloon at the end of the needle is inflated for a few minutes which damages the nerve mechanically.
Radiofrequency uses electricity to damage the nerve.
In all these percutaneous procedures there is an 85% early success rate but within 5 years about half of the patients will have pain return. These procedures can be repeated.
The risks of
percutaneous procedures
include meningitis, some
difficulty chewing, a cheek
hematoma,
double vision, loss of the
corneal reflex, anesthesia
dolorosa, a sudden rise or drop
in blood pressure, cerebrospinal
fluid leaks and meningitis Stereotactic Radiosurgery There are several machines used. All provide focused radiation to a small point near the nerve’s origin from the brainstem. The nerve is damaged using radiation. Gamma Knife – uses cobalt radiation and is the machine used in Winnipeg (soon to be in Toronto and Sherbrooke) Modified LINAC – this is machine currently used in Calgary, Vancouver, Toronto, Ottawa, Halifax, Montreal Novalis – will be installed in Calgary next month. With this machine the size and shape of the beam can be adjusted to achieve an optimal homogeneous or modulated dose of radiation.
Secondary TN The compression of the nerve is caused by a tumor or a vascular abnormality. It occurs in less than 2% of TN. The pain is slightly different with some associated sensory changes, numbness or weakness.
TN secondary to Facial trauma The pain may be more throbbing and burning than the electrical shock like pains of typical TN and associated with significant facial trauma or reconstructive surgery.
Post- herpetic Neuralgia The pain follows an attack of shingles. People describe it as a crawling, prickling and burning sensation.
Anesthesia Dolorosa A complication of the surgeries for TN. Patients experience a combination of numbness and burning pain. It is very difficult to treat.
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Members News |
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Donations this monthHelen Scheuerman, Brooks, AB Dorothy Scott, Medicine Hat, AB Eleanor Wetherelt- Nanton, AB Beatrice L’Arrivee - Regina, SK Phoebe Kesteven - Calgary,AB Chris Goodman - Calgary,AB Bill Alderman - Niagara-on-the-Lake, Ont. Dr. Zelma Kiss - Foothills Hospital, Calgary, AB Constance Allen - Miramichi, N.B.
Thank you to all our Members for your donations to the Association. Without your help we would not be able to do the things that we can now hopefully do.
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New Members this monthPhoebe Kesteven - Calgary Lynn Foo - Calgary
HAPPY BIRTHDAY TO THOSE WITH JULY CELEBRATIONS
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From our Members |
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Recipe of the Month
Orange Cream Fruit Salad
Mosquito Free Summer!
Put some water in a white dinner
plate and add just a couple
of
drops of Lemon Fresh Joy
dishwash
soap. Set the dish on a porch or
patio. Not sure what attracts
them, the lemon smell, the white
color, or what, but mosquitoes
flock to it, and drop dead, or
fall into the water, or on the
floor within about 10 ft.
Another Mosquito Hint: Use Bounce Fabric Softener sheets to repell those pesky mosquito’s. Just rub it over you. It works great on babies!
Humour: In winter, why do we try to keep the house as warm as it was in summer when in the summer we complained about the heat?
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Dear Fellow-Members and Fellow-Readers, TNAC Newsletter, I recently remarked to your Editor on the number of recipes and light stories in the Newsletter, with my suggestion that this type of material was of interest mainly to the ladies. Your Editor replied inviting a Male Interest Column. My response was that TN is of equal concern to ladies and to gents, and that both of them are hoping, not so much for light material, as for articles on what is new with this very painful condition and how to deal with it. If I understand her right, your Editor has received many favorable responses to the recipes (and, I believe, to the stories, etc.) but, as to articles pertaining directly to TN, she has pretty much exhausted her existing resources. It seems that, if the members don’t help to contribute, then she is at a loss to think of another alternative. So, now writing as a member and a reader, I must make the point that the TNAC Newsletter is YOUR Newsletter. You depend on it for news and articles of interest; and it depends on YOU for contributions in the form of news, ideas, questions and answers, and indeed anything that will enliven the interest of all of us and satisfy our needs. If you wish your Editor to continue it, PLEASE contribute. One method of doing this is to write about new TN information that has come your way. Another method is to ask questions, either general or specific, that have been bothering you, and that you would like other readers to answer, through the Newsletter, if they can. If this procedure leads to further discussion, so much the better. It will keep us all both physically and mentally alive. But, either way, PLEASE DO CONTRIBUTE. I have sent the following questions to your Editor, and I believe she is seeking answers to them outside. However my original idea was that they might be published in the Newsletter, so that any reader(s) who knew the answers might submit them for publication too. That way, the Newsletter would benefit in both directions by a cross-exchange. General Question How long has TN been known in its present form and what, broadly, has been the development of its relief? Specific Question Recently, Trileptal was recommended to me as an alternative to Tegretol. This was said to have many of the pain-relief qualities of Tegretol (said to be "son of Tegretol") but to have distinctly fewer side effects, such as that it makes the patient feel much less tired or "groggy." My questions are: Have any of your readers actually tried Trileptal? If so, have their experiences in severe pain-relief been good or bad? I ask, because Tegretol has been prescribed to me for many years for relief from TN and I am used to it and I have a certain amount of faith it. Therefore I am rather reluctant to transfer my faith into this other medication unless I can find fellow-sufferers whose experience in it has been good. Comments from your other readers would be helpful and would be appreciated. I believe that regular medical questions and answers of this type would increase your Newsletter's usefulness. Thank you for listening to what I have had to say today, and let's all hear from each other regularly. Yours sincerely, Peter Miller
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My TN Story |
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Dear Fellow Sufferers: I have had trigeminal neuralgia for 15 years. I am 76 years old. At first, I thought it dental related and had two teeth pulled. Really needed them teeth too! After much suffering and pain, my wife put me in hospital. She realized we needed professional help. I was dehydrated and starving due to inability to open my mouth to feed properly. A young female Doctor diagnosed TN and prescribed Tegretol. Our family physician referred me to a neurologist who confirmed the condition. It took three years to finally figure that all out. For the next five years the condition got progressively worse and the medications got increased. - Tegretol and Tylenol 3. The effects of these pills took a toll on me. I lived in la la land most of the time. I saw several specialists who tried to help. To my surprise I discovered many professionals do not know enough about this wickedly painful condition. Some actually seemed almost afraid to treat me. I became a member of the Trigeminal Neuralgia Association in the States. We educated ourselves from these newsletters. After a serious bout and hospitalization once again, we were sent help from our local Doctor and community Health Care system. I was given physiotherapy to strengthen my leg muscles (from deterioration from sleeping so much). A dietician worked with my wife to choose the correct diet and my wife discovered and invented ways to get nutrients into me. It was a daunting task, but perseverance in making nutritious “soft” and appetizing foods paid off and I got stronger. We now have an emergency system in place and can deal with any flare-ups. Through the newsletter, we read a Notice of a meeting being held in Toronto at Toronto Western Hospital. There were to be two speakers. I was in a bad episode, so my wife went to the lectures with my two children. They were encouraged by the knowledge and dedication of the two doctors and these men were in Canada. We at last had access to two people who had taken an interest in TN, and were dedicated to relieving the pain and suffering of so many people. Dr. Anthony Kaufmann of Winnipeg and Dr. Michael Tymianski, Toronto, are very caring and talented people. They do ongoing research to try and discover about this challenging condition. They do not fear it, they are fascinated and dedicated to resolving the causes to finding ways to treat and eliminate this awful illness. These men deserve great recognition for the work they do. They of course treat all sorts of neurological disorders, but they are the best people. They are teaching others and they teach us so that we may teach others. I found Dr. Tymianski through my wife and children’s visit to that meeting. He has since performed glycerol rhizotomies. I had two a year ago- the first one did not work and he immediately booked me in a week later for the second. I was pain free for 8 months. It was wonderful to live normally, eat properly and get healthy. The neuralgia resurfaced but only in one area, not three areas as previously. Then the pain became severe again after 6 months, I again contacted Dr. “T”, I have just had my third Rhizotomy. It took place this very week. So far so good. I am going on a plane trip for a wonderful vacation, something quite impossible when you are afflicted and controlled by severe neuralgia. I am living life, week by week and taking it as it comes. There is a light and hope now. God Bless the people who work to spread the word through helpful newsletters. At the lectures in Toronto, we were delighted to learn Canada had its own new TN Association forming. You do great work. We have passed your newsletters on to other neuralgia sufferers and are trying to educate our own doctors and dentists about how this condition works, from what I have experienced myself and from what I learn from you folks and the good Dr. Kaufman and Dr. Tymianski and their teams. There are probably other dedicated medical people working on this condition, and hopefully people will share the information so that people in their area know who to go to for help. I don’t live in Toronto, but it is sure worth the hour and a half to two hour drive to the Big City from my home town, after fifteen years of misery. Living for today, Michael Crudden, 27 Ivanhoe Rd., Brantford, Ont. N3R 6T9
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Patty’s Ponderings and Miscellaneous Ramblings |
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I am trying a new format for the newsletter this month. My goal is to have a newsletter that is a little more user friendly (especially for me) and one that I can use equally for the email edition and the snail mail edition. Before this issue, I have had to do two complete newsletters – one for each way of sending it out. With Jan Williams’ help, we have designed this template to try. I would appreciate any comments on this new format. Please bear in mind that this issue is just a trial format and does need improvement! I do hope you all have read the letter I received from Peter Miller. He has brought up some good items to discuss. I would appreciate if you, as readers of the Newsletter and members of the TNAC would send me your experiences with using Trileptal and other drugs also. I will publish them all in the next issue. Also, please send me any questions you have regarding TN – anything at all – every question that you have is important and we need to find an answer to them so that all of us can benefit. Please send me any other ideas or ways that you have of coping when your TN pain is hitting you hard. I’ll publish them all. You as members of the TNAC are important in keeping this newsletter beneficial to all the members. I have sent the questions from Peter Miller to Dr. Kaufmann to answer. His secretary has informed me that Dr. Kaufmann is away at the moment and he will return too late to have the answers in this issue of the newsletter. But, she has informed me that the answers will be ready for the August issue. We will look forward to having those answers at that time. Meanwhile, send me what you have experienced with various drugs, etc. I am looking forward to having a great August issue with lots of beneficial information for us all. PLEASE, PLEASE, PLEASE ----- CONTRIBUTE!!!!!!!!! Have a great July. Patty
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Trigeminal Neuralgia Association of Canada |
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Head Office and Lethbridge Support GroupMarion Guzik, President 1514 Lakemount Blvd South Lethbridge, AB, T1K 3K4 Phone: (403) 327-7668 mguzik@telus.net |
TNAC Newsletter
Patty Moyer, Editor Box 973 Coaldale, AB, T1M 1M8 Phone (403) 345-6262 pgmoyer@telusplanet.net |
Board of DirectorsPresident: Marion Guzik Sec/Treasurer: Don Brewer Directors: Patricia Moyer Mona Leslie John Edwards |
Medical AdvisorDr. Anthony Kaufmann, MD, BSc (Med), MSc, FRCSC Director, Centre for Cranial Nerve Disorders Co-Director, Winnipeg Centre for Gamma Knife Surgery Health Sciences Centre GB1 - 820 Sherbrook Street Winnipeg, Manitoba R3A 1R9
Contact Telephone: (204) 787-7278 |