Trigeminal Neuralgia Association of Canada
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.
NEXT MEETINGS....
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Saturday April 12, 2003 |
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2:00 p.m. @ Senior’s Centre |
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Saturday May 10, 2003 |
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2:00 p.m. @ Senior’s Centre |
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. More on this exciting event next month.
Last Meeting News:
Members in attendance: Patty Moyer, Beverly Ens, Zenon Malec, Jim Nalder, Don Brewer, John Edwards, Marion Guzik. Guest Speaker: Irene Klassen.
We discussed the new logo and agreed to go with the Maple Leaf containing the letters T.N.A.C. as submitted by Brenda Sharpe of St. Catherines, Ontario for our lapel pins. Thanks Brenda.
We will be having letterhead and tax receipts made when we get our charitable donations number. We will also be looking into having lapel pins made using the same logo.
There was a discussion regarding Vita Link comparing costs and benefits to Medic Alert. We came to no conclusions about this.
Meanwhile, new support groups continue to start up across the country.
At this time, it appears that Dr. Casey will be coming to Lethbridge on May 31st although the date is yet to be confirmed. Dr. Kaufmann may also be here at that time as well as in Calgary on June 28th. We will be discussing traveling as a group for anyone who wishes to see Dr. Kaufmann in Calgary.
We decided that we need to order another 12 Striking Back books but we still have to find out the status of the last 12 books that we ordered.
Print size on the e-mail version of our newsletter was discussed. Patty explained she is using the large size font at the request of some readers who find it easier to read. She has also received more e-mails of compliments and appreciation for the newsletter.
A question was brought forward—Is T.N. more prevalent in one Ethnic origin than another?
Irene Klassen gave a very interesting talk on all forms of grieving. However, I listened rather than took notes so I will not attempt to abbreviate what she said. Perhaps in the near future, we might persuade Irene to write an essay on the subject and let us print it in the newsletter. EDITORS NOTE: Irene’s essay in printed in this edition of the newsletter for you to read.
NEW MEMBERS FOR THE MONTH OF MARCH 2003
ALBERTA BRITISH COLUMBIA ONTARIO
Bev Barton Amy Kohnke Pam Kubala
Patti Kromm Patricia Taylor Diane Kirk
Kari VanHerk Andrew Pillar
Karen Bernard SASKATCHEWAN Lorraine Calderone
Cora Rafuse Barbara Tarte
Marga Joost
MANITOBA NEW BRUNSWICK
Marion Hucul Joan Robinson
Verna Blais
Donations Received March 2003:
Hazel Erdmann, AB Helen Amos, ON
Patti Kromm, AB Lorraine Calderone, ON
Dorothy Scott, AB Connie Allen, NB
Kari VanHerk, AB Dr. A. Kaufmann, MB
Striking Back Sales: 5
HAPPY BIRTHDAY’S TO ALL THOSE WITH APRIL CELEBRATIONS!
IMPORTANT NOTE:
WE STILL HAVEN’T RECEIVED EVERYONE’S QUESTIONAIRE’S. We are trying to establish a database so please remember to return your questionnaire (by regular mail) that was sent out at the start of the year. In this way, it will help us to serve you better. Should you have previously paid your Membership fees - Please mark as such. The sooner we get back all the questionnaire’s, the quicker we can complete the database. Thank you to all for your co-operation.
Marion
Ask The Specialist:
(answers provided by Dr. Anthony Kaufmann)
Q: Regarding an MVD surgery, what is known about the durability over a long term and the ageing effects of the Teflon? Will it break down over a period of time and how long might that time period be? After an MVD is there any possibility of wear upon the artery wall?
A: “The Teflon is inert & therefore should never break down or become severely scarred to surrounding structures. It is very soft as the implants are made of shredded Teflon Felt. I’ve re-operated on people who had their first MVD up to 8 years before and found the shredded Teflon Felt looking very much like it did the day it was implanted. This is not true for some other types of implants that can become quite hard & scar onto nerves & vessels.”
Anthony M. Kaufmann, MD, MSc, FRCSC
Comment from Dr. Kaufmann:
Article on Experimental Implantations for Headaches, March TNAC News
Last month the TNAC newsletter included an article regarding brain stimulation for crippling headaches. There are a variety of investigational or experimental procedures that may be considered for people suffering with cranial facial pain complaints that fail to respond to the standard medical or surgical treatments (sic). These include stimulation of the brain surface (motor cortex stimulation) or deeper structures (deep brain stimulation) as well as long-term electrical stimulation to the trigeminal ganglion or nerve root (peripheral nerve stimulation). All these techniques involve placement of the fine electrode wire, which is then tunneled beneath the skin & connected to a stimulator battery pack located just beneath the collarbone, like a cardiac pacemaker. This technology has been very effective in treating some forms of Parkinson’s Disease and other movement disorders, using the deep brain stimulation. In the setting of trigeminal neuralgia such interventions are only considered when conventional medical & surgical treatments have failed. The condition of “failed TN” is also usually associated with some severe permanent trigeminal nerve injury & painful numbness (anesthesia dolorosa). Another investigational treatment for such complex cranial facial pain is the placement of a small catheter into me-space around the brainstem, for the delivery of pain-killing medications. If effective, this can be connected to a drug pump, surgically implanted beneath the skin.
The results related to the use of these investigational treatments for chronic cranial facial pain are not very encouraging at this point, with less that half of people reporting significant pain relief, in the few studies that have been published. One way to potentially improve the results is by becoming more effective in selecting the right patients, with the right kind of pain, to undergo each of the specific interventions. In the future, we hope to have better ways of assessing & categorizing the type of cranial facial pain & using this information to more effectively select the right treatment for each patient. Fortunately for most people with trigeminal neuralgia there are much simpler & more effective treatments available.
Dr. Anthony M. Kaufmann, MD, MSc, FRCSC
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WHAT’S GRIEF GOT TO DO WITH IT? Written by Irene Klassen, Regina
I want to take this opportunity to thank those of you from Lethbridge & area who met on March 8th. It was an encouragement to me to see some success stories. I related these to Bev before her operation so that she would feel less alone while going through her operation & recovery. I have been asked to relate what I spoke to you about for the benefit of those who were missing. I will make the attempt but don’t be surprised if your only thought while reading is “she didn’t say this”. I talk from the top of my head & have no idea what I said. The only relatedness to what I talked about may be the subject & phraseology.
Every person who has ever lived has had a life filled with grief. Society quite often only looks at grief as a phase people go through when a loved one dies. In reality, we face grief on an ongoing basis from the time we are babies. So what is this grief we talk about? If you have ever watched a child when they break a toy you will have some understanding of what grief really is. They first do one of two things. They will either burst into tears or they will look at it like they can’t believe it has just broken. They will then do one of two things, take it to a parent to fix or become angry. It it’s not fixable they will maintain that they didn’t like the toy anyway so don’t care or they will cry. At some point they will say that they miss that toy and ask for a replacement. All these emotions are called the phases of grief - Numbness (disbelief, denial), Anger, Euphoria, Depression (guilt), Acceptance. We face all these emotions with every loss: Loss of a job, friends move, freak (or severe) storms, stages of childhood (loss of the baby when they start school, loss of the child when they become a teenager, loss of the teenager when they graduate, etc.), atmospheric changes, life changes (marriage, child-bearing, retirement), loss of our freedom when we marry, have children, take on more community activities than we have time for, & grief over the changes within us as we move through life (the phrase ‘if I had it to live over again’ is a post grief statement).
Where does TN fit in? The loss of your former self, your pain free days, your days with no meds to keep track of, the person you were before the pain hit. It fits in with the forced changes in your lifestyle, the forced attitude changes about your own abilities, the forced reality that you can never go back to who you were, the forced monetary changes, the loss of some of your independence. There are also the types of grief to consider:
Anticipatory Grief - Expecting it. So what in this disease do you expect & pre-grieve? Worse pain? Future losses (physical or monetary)? Earlier retirement? You probably have more than a few that you can add here.
Acute Grief - A one time, severe loss. Quite often this could be compared to a fatal auto accident. In TN it’s the first strike of the pain & realization that something terrible has just happened to you. It’s the shock & frustration of the diagnosis. It’s the feeling of being disappointed, disoriented, disorganized, out of control, let down. You know within you already that this is a life altering pain but won’t face that reality until you’ve had time & doctors verify that fact.
Chronic Grief - Grief that doesn’t go away. Families of addicts face this, as well as those with the many diseases that slowly take ones life (ms, cancer, aids, heart disease, etc). People with TN, & their families, grieve on a continual basis as well. With every new pain, every new med, every new doctor, every new piece of information, we face the loss of the former, grieve the present, & pre-grieve the unknown future.
Complicated Grief - More than one area of grief. With TN, this can be the lack of family support (no one understands the pain), lack of knowledge & support at work, unbelievable so you feel defensive, still grieving one stage of the disease when the next stage hits, the attitudes/practices/beliefs around your own ability to acknowledge what you feel. Then you have all the Adjustment Disorders - depression, anxiety, disturbed emotions & behavior, sleep disturbances. Complicated grief can be identified by the extended time of the symptoms, interference caused by the symptoms and intensity of the symptoms. Complicated grief may appear as a complete absence of grief, the inability to experience normal grief, delayed grief, conflicted grief or chronic grief. Complicated grief also comes into play in that you don’t just move through one stage & move on to another. You go through each many times & at various degrees of severity. There may be times when you feel you are going through two stages at once. That’s normal.
The major thing to realize & remember is that you cannot wish for grief to go away. Better to acknowledge it & move through it. Give yourselves permission to grieve. Pat yourselves on the back for allowing the emotions that you encounter during the grief. Remember as well that those around you are also suffering a loss & grieving along side you. They may be in the angry state while you suffer through the depression so it’s a time to give your loved ones lots of emotional space & lots of understanding (making sure that they understand that you need this as well). Take pride in every accomplishment. Find humor in every day. Find the positive, Find the positive, Find the positive. Grief is a lot easier to take if you treat it like the common cold - it seems really bad right now but you know it won’t last forever.
Notes From Marion’s Desk:
It is now official. We have received our Charitable Organization Number in writing. Boy does that feel good! Receipts will be issued as soon as our receipt book is printed. Make sure you put your receipts in a safe place until next years Income Tax season rolls around.
Don, Susan, Patty and myself journeyed to Calgary on Saturday March 29 for a very successful discussion with reference to the presentation of Dr. Kaufmann who will be there on Saturday June 28th, 2003. Posters will be distributed and put up by the members of Calgary the first week of June.
Dr. Casey’s visit to Lethbridge still has not been confirmed. His last date had to be cancelled due to the fact that he was posted to Trauma Call that week. We are still hoping that he will be able to come to Lethbridge.
Inquiries & questionnaires are still coming in. I hope that we receive all the questionnaires back that we sent out so if you have not returned yours, PLEASE DO SO!
I had a call from Dave Geall of VitaLink & told him that his email was published in our March newsletter. He informed me that should anyone sign up with his company, TNAC would be credited.
Lapel pins have now been ordered & will be available for sale shortly. I think they will be very nice. Stationary, envelopes & receipts are also on order so we should be receiving these in the next month.
I am in the last month of volunteering for the Senior Income Tax Programme. This too has been very rewarding to me but I will be glad when April 30th rolls around.
Hope you are all well - until next month.
Marion
Archives:
The following little bit of information was published in our May, 2001 newsletter. It may be of interest to those newer members of you who were not receiving our newsletters at that time.
HEADACHE “TRIGGER” FOODS: Note: Every person is different. What might trigger pain for one, may not trigger pain for another. These are generally, though, known “trigger” foods.
Apples, Citrus Fruits, Eggs, Onions, Bananas, Corn, Meat, Tomatoes, Chocolate, Diary Products, Nuts and Wheat
“PAIN SAFE” FOODS: Same warning as with the Headache Trigger Foods.
Brown Rice and Cooked Vegetables. Some of the recommended cooked vegetables are Artichokes, Asparagus, Broccoli, Chard, Collards, Lettuce, Spinach, Beans, Squash and Sweet Potatoes.
Archive Photo
This picture was taken at the Lethbridge Support Group meeting in September 2001. Pictured from left to right are Marion Guzik, Dr. Nicholson and Mona Leslie.
RECIPE ...............
GARLIC SOUP
Submitted by Marilyn Najm, Banff, AB
2 large whole unpeeled garlic heads
3 Tblsp. Olive oil
2 Bay leaves
1 Tblsp. Butter
2 cups minced onion
1 cup minced carrot
1 large potato, peeled and cubed
4 cups chicken stock
1/2 cup dry white wine
1 tsp. Salt
1/2 tsp. Pepper
1/4 cup heavy cream
1) Roast garlic. Preheat oven to 350. Cut the top off each garlic head so that the tip of the clove is exposed. Place garlic heads on large piece of aluminum foil and drizzle with 2 Tblsp. Of olive oil. Add bay leaves and fold the foil to form a packet, place in oven and bake for 45 min. Cool slightly, and squeeze the garlic heads into small bowl. Discard the outer husks.
2) Make Soup: Heat remaining olive oil in heavy saucepan, add onions and cook until translucent, add carrots, cook over medium heat for 5 more min. Stir in potatoes, chicken stock, wine, roasted garlic, salt and pepper. Cover and bring to a boil, reduce heat to medium low and continue to cook for 35 minutes.
3) Finish The Soup: Puree soup until smooth. Return to heat and whisk in the heavy cream. Heat until warm. Do not boil.
Thanks Marilyn for the recipe, it sounds real yummy!
THE NEWLY FORMED
TRIGEMINAL NEURALGIA ASSOCIATION OF CANADA
WINNIPEG CHAPTER
WILL BE PRESENTING A LECTURE FOR THE GENERAL PUBLIC
AND MEDICAL/DENTAL PROFESSIONALS
Hosted By: Marion Hucul, Support Group Leader
LECTURER: Dr. Anthony Kaufmann
WHEN: May 8th, 2003
7:00—9:00 p.m.
WHERE: Health Science Centre
Basic Science Building
Theatre B
Winnipeg, Manitoba
CANCELLATION OF TORONTO MEETING
The meeting that was to be held in Toronto on April 26th has been cancelled due to the SARS problem. We will let you know when this meeting will be rescheduled.
Photo from the first presentation in Toronto - January 25th, 2003.
Left to Right: Dr. Kaufmann, Carol Horvat, Beth Heitman, Dr. Tymianski, Dana Lavrence
My Experience With TN
Kathy Somers, Newmarket, Ontario
I’ve had Trigeminal Neuralgia for 6 1/2 years. It started the week of my nephews wedding. Little shock like pain from the eye tooth. Dancing & air conditioning at the wedding made it worse. I made a dentist appt. right away. He took x-rays, put me on antibiotics in case it was an infection. It made sense since my upper eye tooth is false & needed to be replaced. X-rays showed no infection & he immediately sent me to a specialist. He put ice on my teeth, 5 needles of freezing & I still had pain. He told me to see my family doctor because he felt it was a nerve problem, not dental.
My family doctor knew exactly what it was when I explained the pain. He sent me to a neurologist who did some tests & told me everything was normal (I assumed normal for TN). He sent me for an MRI & put me on tegretol. It took a while for me to have the MRI because I’m severely claustrophobic & wasn’t able to make it inside the machine the first time. They gave me a sedative the second time around. I was on tegretol for about a year. The dose was too high even though it was pretty low & my family doctor had to lower it still. I was a mess & had headaches & depression all the time. I really don’t do well with medications. My MRI was normal. I took myself slowly off tegretol & coasted for a few years trying chiropractor, massage therapy, acupuncture, sacrial cranial treatments, vitamin B shots, pepper pills (made it worse). All the above helped with my back headaches & putting my body back to a healthier state. I felt great except for the TN. Massage therapy is great for TN because when you’re in so much pain the rest of your body tightens up including your face muscles & it all causes so much stress. I learned a lot about keeping the rest of my muscles relaxed. All of the above people who helped me were so caring & helpful & I’m very grateful to have met them. All of the above is expensive but this was my gift to myself.
The pain was worse & finally I decided to try Neurontin Nov/01. It controls the pain but basically it doesn’t work just like tegretol. In the meantime I was looking at the American Assoc. site. I found some Canadian contacts & started asking questions about surgeries & success rates & what other TN people had tried. Everyone I talked to told me about Dr. Kaufmann in Winnipeg. So the e-mails began. He recommended I check out his web site. A fabulous support for all us TN sufferers & a great deal of work & thought has gone into this site. We talked on the phone & discussed that I was Atypical & sometimes the surgery helps & sometimes doesn’t. So on Jan. 13th my husband & I met with Dr. Kaufmann in Winnipeg & on the 14th I had the MVD surgery.
When I woke up in recovery the first thing I did was touch my nose. I immediately knew that I still had pain. I did have a blood vessel laying on the trigeminal nerve & every time my heart beat they made contact. Teflon was used to cushion the blood vessel. The day following surgery I had a royal case of TN pain. It was explained to me that sometimes this takes time, my brain is extremely excited after receiving pain messages for so long, give it a month. We were in Winnipeg for 7 days. After arriving home I had a few good days & started decreasing the Neurontin slowly (300 at a time) on 2400 mg a day. The pain started to increase & needless to say I’m now back on 2400 mg. a day. Five weeks have passed since my surgery & we agree to give it two months at this time.
I could have a “Percutaneous Rhitzotomy” or the Gamma Knife was also mentioned. If there is anyone out there that has been in the same position as me, I would really like to hear from you. Or if you have had either of these procedures I would like to hear if they were successful or not. I am so grateful for all of the Canadian contacts who have helped & supported me. A very special thank you to Dana Lavrence in Thornhill, Ontario for her great support.
To all of you that recommended Dr. Kaufmann you’re right - he’s great! Just because the MVD didn’t work for me doesn’t mean it won’t help someone else.
Patty’s Ponderings and Miscellaneous Ramblings:
First of all, please help us out with some content for our newsletter. We are looking for more recipes, articles of interest, etc. You can email them to me or Marion.
I’ve done some more work on the web site and have inquired about registering our domain name. Marion will be mailing the payment for the registration of the name within the next few days. It will not be up and running for some time yet so please don’t try to access it! I’ll keep you posted on the progress. There is one heck of a lot more work to designing a web site than I ever thought before. If any of you can offer me any assistance with this, I would be more than happy to hear your ideas and comments. So far, I’ve planned a site of about 6-8 pages with various links. I will try to have a page devoted to the current issue of the TNAC News also with a link to archived issues. I don’t know if I can put Volume 1 (2001) issues on the site due to the way that I formatted them originally. But, I’ll work on that also. I shouldn’t have any problem though with archiving all of the 2003 issues and possibly most of the 2002 issues.
I received some great comments on my ‘Zen thoughts’ from last months newsletter and I appreciate your input. This month I will give you some silly questions and answers. Have a great month.
Patty
Silliness:
How do you catch a rare rabbit? Unique up on it.
How do you catch a tame rabbit? Tame way, unique up on it.
How do crazy people go through the forest? They take the Psycho Path
How do you get Holy water? You boil the Hell out of it.
What do you call Santa’s helpers? Subordinate Clause’s
What lies at the bottom of the ocean and twitches? A nervous wreck.
What do you get from a pampered cow? Spoiled milk.
And here’s another couple of my favorite quotes:
“Remember not only to say the right thing in the right place, but far more difficult still, to leave unsaid the wrong thing at the tempting moment.” Benjamin Franklin
“Living in the moment means letting go of the past & not waiting for the future. It means living your life consciously, aware that each moment you breathe is a gift.”
Oprah Winfrey
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