Trigeminal Neuralgia Association of Canada

Published by: The Lethbridge Chapter

THE TN NEWS

January 1, 2004

Volume 4, Issue 1

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.

DISCLAIMER

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

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 Jan. 10, 2004

2:00 p.m. @ Senior’s Centre

Saturday Feb. 14, 2004

2:00 p.m. @ Senior’s Centre

 

DONATIONS FOR DECEMBER

Sophie Mocnik - B.C.

Lois Henry - SK.

 

NEW MEMBERS FOR DECEMBER:

Sophie Mocnik - B.C.

Beatrice L’Arrivee - SK.

Gordon Gauley - B.C.

 

BEST WISHES GOES OUT TO:

Chris Goodman, Calgary, who is booked for his MVD on January 6 and Sandy Rivey, Calgary, who is booked for her MVD on January 13th, 2004.

 

HAPPY BIRTHDAY’S TO ALL THOSE WITH JANUARY CELEBRATIONS!

 

IMPORTANT NOTE TO ALL TNAC MEMBERS:

Membership Fees for 2004 are due on June 1, 2004. If you wish to pay early, you may send in your renewal fee ($25.00) to: TNAC, Member Fees;

1514 Lakemount Blvd. South; Lethbridge, AB T1K 3K4

 

NOTE:

In this issue we have a few really interesting articles. One is on Celiac Disease. The other is on Choosing Treatments for Trigeminal Neuralgia. This article was written by R.A. Lawhern who has written many articles about TN. Because of the length of this particular item, part 2 will continue in the February newsletter. I hope you enjoy these articles. If anyone has any suggestions as to other articles they would like to see in the newsletter, please contact Patty or Marion with your ideas.

Also, if anyone of you have any recipes, tips/hints, any newsworthy items of interest – please, please contact us. This newsletter is meant for all of you, our TNAC members, and we need your participation to make it a great newsletter!

 

MARION’S DESK

I hope you all had a pain free Christmas and that Santa was good to you all .

This issue will be considerably smaller than our December newsletter and I hope you all enjoyed the good recipes that were published in it.

If any of you wish to submit articles for the TNAC newsletter please do not hesitate to contact myself or Patty. We do need information from all of our members right across Canada so please help us out.

I want to congratulate Patty Moyer, our TNAC Webmaster for successfully launching our TNAC Website. Please log on to www.tnac.org. There is so much more to do and a lot more things to add, but it is a very good start to let people know that we are here for them. See Patty’s Ponderings for more details.

That’s about it for this month. I hope 2004 will be a better year for us all.

Marion.

The most wasted of all days, is one without laughter. e. cummings

 

 

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 January 20th, 2004, at 7 p.m. Please mark your calendars for this date. For further information please contact Jan Williams, 403-295-0987 or email TNAC Calgary Group - tnaccalgary@hotmail.com

 

TORONTO, Ontario:

The Toronto Support Group will meet on Sunday, January 25th, 2004 at 10:00 a.m. at the

Thornhill Community Centre,

755 Bayview Ave.,

Thornhill, Ontario.

PLEASE NOTE THE NEW TIME. Mark your calendars for this date. For more information, please call Dana Lavrence at 905-886-7563 or Carol Horvat at 905-687-8562.

 

WINNIPEG. Manitoba:

To this date we have not received any notification of a meeting date.

 

LETHBRIDGE, Alberta:

The Lethbridge Support Group will meet on January 10th, 2004 at:

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 or email mguzik@telus.net. At this meeting we will be discussing our quilt, afghans and a tooled leather purse raffle. All of these items have been donated and will generate money for our Lethbridge Group.

 

SUPPORT GROUP NEWS:

TO OUR SUPPORT GROUP LEADERS: If you wish to contribute anything about your group, such as below, please do not hesitate to contact Marion or Patty so that it may be inserted into our newsletters.

 

CALGARY:

We are pleased to report that Jan had her MVD and is doing great. We will be waiting to hear about your success story in our newsletter soon. Also Rick Keuben who had his MVD on Oct. 28th is continuing to do very well and we will also be looking forward to your report Rick. Sharon Habick is also continuing to do well and we hope to see a success story soon.

A big Welcome goes out to Lynn Foo and her husband Richard who have joined the Calgary Support Group.

 

LETHBRIDGE:

At our December meeting we had a lovely time. We did not have a Support Group meeting but a Christmas Party. Bernard & Rae Bastian were celebrating their 25th Wedding Anniversary on this date so we had a double celebration. I want to thank all of our members for making this day a happy occasion for Bernard & Rae. Patty Moyer baked a chocolate cake for this celebration which had a lovely cup & saucer on top along with flowers. A big thank you one & all for supplying the delicious lunch. We had so much & I know it was enjoyed by everyone. The door prizes, donated by Mona Leslie & the prize for the Christmas game, donated by Gwen Edwards were real hits. Betsy Groonenboom donated 8 table centrepieces & these were also given away. Thanks so much members, it is a real pleasure to be your Support Group Leader.

Jake G. had TN this day, but he came to the party, even though he was in pain so we hope that you are now feeling better. To Zennon M. & Mona W. who could not attend due to TN, we all hope that you are feeling better. Zennon has now decided to have an MVD & he hopes it will be soon.

A big welcome to Walter Hartman and Elsie to our TN Support Group.

Marion

 

Remember in our September 1, 2003 Newsletter the article "There is Life After TN" along with the picture of the gal that was doing the cartwheels across the bridge that her husband built? Well guess who that person was – Yes, the one in the Santa Claus hat – all smiles and looking so happy. You guessed it - BRENDA SHARP, and Brian her husband. We are so happy that you sent us this photo along with your Good Wishes. Both of you look great!

 

THIS MONTHS RECIPE:

MAFIOSO CHOCOLATE CAKE (Patty’s kitchen)

1/2 c. cocoa powder

3/4 c. boiling water

1 c. sour cream

1/2 tsp. baking soda

2 c. sifted cake flour

1/2 c. butter (no substitutes)

2 c. white sugar

3 egg whites

1 1/2 tsp. vanilla extract

6 tblsp. Butter, softened (no substitutes)

3/4 c. cocoa powder

2 2/3 c. confectioners sugar

1/2 c. milk

1 tsp. vanilla extract

In small bowl, mix together 1/2 c. cocoa & 3/4 c. boiling water; set aside.

In another small bowl, dissolve baking soda in the sour cream by stirring them together.

In a large bowl, cream the 1/2 c. butter & 2 c. sugar. To the butter & sugar mixture, alternately add the sifted flour & the cocoa mixture with the sour cream mixture. Beat until fluffy. Beat the egg whites until stiff & fold in the egg whites & 1 1/2 tsp. vanilla.

4) Grease a 9x13" pan & pour the batter into it. Bake at 300 degrees F. (150 deg. C) for 50 min.

Frost with Chocolate Frosting (below).

Chocolate Frosting:

Cream 6 tblsp. Butter in a small bowl. Add 3/4 c. cocoa & confectioner’s sugar alternately with milk; beat until spreading consistency. More or less milk can be used depending on the texture you want. Blend in the vanilla. This yields about 2 c. of frosting.

This cake is an old Italian recipe. It is just wonderful. This is the cake that I made for our TN December Christmas/Anniversary party.

CELIAC DISEASE

What has been described as the staple food or the ‘bread of Life’ but for an increasing number of people the opposite is true. Bread or wheat is the source of pain & suffering & the cause of relating health problems.

Celiac Disease is a baffling one for doctors to diagnose so with the average patient having to go through seven years to be correctly diagnosed, the chance of more serious problems occurring during the process sometimes happens. The symptoms can be varied; such as constipation and/or diarrhea, abdominal pain, bloating from gas, heartburn or nausea, anemia, sinus headaches & infections or ear infections as children, skin rashes, loss of muscle tone, depression, short stature, weight loss, infertility, & these can be a combination or be only one or two symptoms. The different symptoms make it hard for the doctors to pinpoint the disease & some have suggested that emotional stress is the source of the symptoms.

The only treatment is to avoid eating any wheat products, so once diagnosed, there are life changing habits to learn. You need to read all you can about the disease, memorize all the hidden sources of wheat & you have to change your preparations & gathering of food because of the danger of cross contamination. For example, you can never put your hands on your food without washing with soap & water before you put anything into your mouth. Your kitchen area of preparing food has to be re-examined & made safe.

For example:

Plastic or wooden bread boards or utensils can’t be used after any wheat has been in contact

Have your own personal butter, sugar, jam, etc. containers

Wheat leftovers should be on a lower shelf in the fridge

Use only new plastic containers

Keep one or two cooking pots for the wheat people in your household

Paper products shouldn’t come in contact with your food as it contains wheat (paper plates, muffin cups, soaker pads for raw meat, paper cups)

Eating finger food in a car or in front of a TV is hard to keep from touching anything; while eating keep a wet, soapy wash rag handy after touching the remote, window or anything while eating

Stay out of a room while flour is being used as airborne flour will enter your system through your nostrils & make you sick

Learning how to stay healthy seems overwhelming at first but it will soon become easier as your feel better & develop a positive attitude about life. Everyone with this disease should belong to the National Celiac Association as it is a great source of information about new products available, help for traveling, & new information & hints for celiacs that is always welcome & needed. Restaurants are becoming more aware of the diet as cooks are being trained about restrictive diets so eating out becomes an enjoyable outlet again.

I have had an inquiry about Celiac Disease by one of our members, who has Celiac and I came across this article and found it very interesting. (Marion)

***** Information taken from the Lethbridge Senior Citizen Magazine *****

 

AN INVITATION TO TNAC MEMBERS:

I received the following email from R. A. "Red" Lawhern last week and would like you all to read it. 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 1

Written & published by: R. A. Lawhern, Ph. D.

This article is for people who have been informed by a medical or dental professional that they have a condition called "trigeminal neuralgia." We are concerned here with the question, "What treatments are available and how do I choose between them?" We will discuss options and (hopefully) shed some light on how you may choose between the options in a way that works best for you. As we begin, please accept this reassurance:  although trigeminal neuralgia (TN) can be a long-term life issue for many people, a high percentage of patients find effective management and even long-term resolution of their TN through medications or surgical procedures.

 

About the Author:

The author of this article has been webmaster for the TNA Homepage and was a member of the Board of Directors of the Trigeminal Neuralgia Association for three years. My spouse has had TN with atypical features since 1996. For three years I have assisted patients with information research on causes and treatments of Trigeminal Neuralgia and other facial pain syndromes. However, I am technically trained in engineering -- I am not a medical doctor. 

The Trigeminal Neuralgia Association has consented to publication of this article on its web site as a TN spouse contribution.  The Association is not responsible for the medical accuracy of what appears here.  You should assume that any errors are solely the author's. Before you accept or act upon the content of this article, you should give your physician a copy and discuss whether it applies to you. This work is offered for information only -- it is not intended to be substituted for the advice and counsel of a medical or dental professional.  Likewise, the Association invites additional or contrary input by patients or professionals, concerning treatment choices for facial neuralgias. 

 

What Are The Options:

There are no permanent "cures" that work for all patients who have pain from trigeminal neuralgia or similar conditions. However, many patients are able to be rid of their pain such that it never returns.  Four general categories of treatments  provide long-term pain relief or reduction for many patients, probably the majority. These categories are listed below in about the order in which most doctors consider them and recommend them:

· Medical Treatment (e.g. anti-convulsive drugs that slow the function of nerves which cause your pain)

· Medical Pain Management (drugs which moderate pain or treat related problems such as depression)

· Surgical Treatment (of several types)

· Treatments of Alternative Medicine

One important thing to remember is that treatment categories are not mutually exclusive. Many patients obtain acceptable management from drugs -- up to and including complete remission of pain. Some patients who have one of the surgeries for TN, will continue to take medications (though perhaps at reduced doses) if their relief has not been total or to control side effects of surgery. Patients in both categories seek out alternative treatments either to promote and assist the primary treatment they are receiving, or as a substitute treatment if other options don't work. Some physicians also recommend these treatments, for the same reasons. 

 

Factors Which Affect Your Choices

The following factors can affect which of your treatment choices will work best for you -- and in some cases may eliminate some of your options. Let's talk briefly about each.

 

* What is the type and distribution of your pain?

The way your pain emerges may affect the way it is initially diagnosed and treated. Effects of Trigeminal Neuralgia are generally felt in one of two ways. Typical or classic TN involves discrete incidents of intense, electric-shock type pain in one side of the face, which sometimes come in repeated "volleys" lasting an hour or more. Atypical TN may have a more "aching, burning" quality at a somewhat lower but still severe intensity, that seems to be continuous for long periods (days, weeks, longer). Sometimes people have pain on both sides of the face at different times, or a mixture of typical and atypical pain. However, any pain that affects the rear quadrant of your head or that crosses the mid-line of your face may involve other problems that are not trigeminal neuralgia. Some of the other medical conditions that can be mistaken for TN are indicated below. 

As a general principle, the more closely your pain resembles "typical" TN, the more likely it is that anti-convulsive drugs like Tegretol or surgeries like Radiofrequency Rhizotomy or Microvascular Decompression will be successful in eliminating or reducing the pain. Many cases of "atypical" TN can be treated by these means -- but the more atypical the pain is, the greater the difficulty in obtaining reliable and long-lasting relief. Many surgeons are hesitant to operate on patients whose symptoms are highly atypical, because success rates in such surgeries are believed to be lower.

How did the pain start?

A lot of patients report that their TN pain seems to emerge "spontaneously out of nowhere." Sometimes patients have a first brief incident of pain and it then goes away for a long time before returning. Pain may recur several times, with gradually decreasing pain-free periods, before it comes to stay. 

In other cases, patients say that the beginning of their pain coincided with a distinct event. Some report having an automobile accident, a fall, or a sharp blow to the face which involves injury (also called "blunt trauma"). A large proportion of patients report pain that precedes  undergoing a root canal or other dental surgery, and persists thereafter. While most neurosurgeons and dentists do not believe that dental surgery causes TN, they believe that dental work might initiate the first symptoms of the condition if it is already developing at the time dental work is done [Ref:  Steven B. Graff-Radford, D.D.S., TN-Alert, Fall 1995]. 

We also know that a lot of people first experience TN pain at a small area along either their upper or lower jaw. Patients may at first mistake their pain for a dental abscess. They go to a dentist or endodontist who performs a root canal. This is one reason why it is very important that dentists should be trained to suspect that neurology could be involved if a patient has sharp, localized pain but no evidence of an abscess on X-rays. Unfortunately, it is still common for TN patients to receive root canals -- sometimes even multiple serious dental surgeries, each procedure unsuccessful and painful -- before anyone pauses to ask whether the problem may not be dental in origin. 

A discussion of the origins of your pain is probably not complete unless we also mention a source that many doctors and dentists consider controversial: NICO (Neuralgia Inducing Cavitational Osteonecrosis). The first mention of bone lesions of this type was made by Dr. G.V. Black in 1915, under the designation "osteomyelitis".  A form of the disorder called "Ratner's bone cavities" was first discussed in 1979 by Dr. E.J. Ratner, and renamed NICO by Dr. J. Bouquot. (To be continued in February newsletter)

 

A Detective story for you to figure out:

Three elderly ladies are excited about seeing their first baseball game. They smuggle a bottle of Jack Daniels into the ballpark. The game is really exciting and they are enjoying themselves immensely mixing the Jack Daniels with soft drinks.

Soon, they realize that the bottle is almost gone and the game has a lot of innings to go. Based on the given information, what inning is it and how many players are on base? THINK…………

Think some more………….

Answer: It’s the bottom of the fifth and the bags are loaded.

 

Patty’s Ponderings & Miscellaneous Ramblings:

Well everyone, I finally have the TNAC web site up and running. You can access it by going to www.tnac.org. The site still needs some work and I will be making changes during the next couple of months. If anyone has any suggestions as to content on the site, please email either myself or Marion with your ideas. I already have numerous changes planned for the very near future. I have accepted the help of Richard Foo from Calgary who is well versed in web site design and he and I will be getting together soon to make some of the changes. Please send me or Marion your comments on the site. I want the site to be something of which we can all be proud of.

I don’t have much else to say this month. I’m a little wore out from having my grandkids home for the holidays, I’m not used to having a batch of little ones running around underfoot anymore - must be a sign of getting old!

I hope you all have a great January.

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: mguzik@telus.net

TNAC Newsletter:

Patty Moyer, TNAC Editor

P.O. Box 973

Coaldale, AB T1M 1M8

Phone: 403-345-6262

EMAIL: pgmoyer@telusplanet.net