Volume 4, Issue 12

December 1, 2004 

Bell's palsy is a form of facial paralysis resulting from damage to the 7th (facial) cranial nerve. This nerve disorder afflicts approximately 40,000 Americans each year. It can strike almost anyone at any age; however, it disproportionately attacks pregnant women and people who have diabetes, influenza, a cold, or some other upper respiratory ailment. In addition to one-sided facial paralysis with possible inability to close the eye, symptoms of Bell's palsy may include pain, tearing, drooling, hypersensitivity to sound in the affected ear, and impairment of taste. The common cold sore virus, herpes simplex, and other herpes viruses are the likely cause of many cases of Bell's palsy.

Studies have shown that steroids are probably effective and that the drug acyclovir combined with prednisone is possibly effective in improving facial function. Other treatments are usually aimed at protecting the eye from drying at nighttime. Some physicians may prescribe a corticosteroid drug to help reduce inflammation and an analgesic to relieve pain.

The prognosis for Bell's palsy is generally very good. With or without treatment, most patients begin to get significantly better within 2 weeks, and about 80 percent recover completely within 3 months. For some, however, the symptoms may last longer. In a few cases, the symptoms may never completely disappear.

The NINDS supports an extensive research program of basic studies to increase understanding of how the nervous system works. A major goal of this research is to develop methods for repairing damaged nerves and restoring full use and strength to injured areas.

Reprinted with permission from the National Institute of Neurological Disorders and Stroke

We also decided to have guest speakers at alternate meetings starting in the new year. The details will be announced later both in this newsletter and on-line. Our meetings are open to members and non-members alike. Everyone is welcome.

The Lethbridge Support Group has cancelled their December 11, 2004 meeting, and will resume on January 8, 2005. December is such a hectic month so it was decided this year we would do something different and have our Christmas Party in January and hope that you all will be able to come out and have some fun.

For more information please contact Marion Guzik at 403-327-7668.

I was very pleased to have attended the American Neurological Association Annual Convention in Toronto, on Oct 4 – 6, with Jan Williams and Dana Lavrence, and was pleased with the number of people that I talked to. I received names of Drs. that maybe will be beneficial to us and I am following up on these leads. Hopefully we will be successful in locating some Drs. that will be interested in TN patients. As Jan said last month in the newsletter, "it was a great opportunity to increase the profile of the TNAC" and we certainly hope this will be the case.

This being my first trip to Toronto, I was in awe of all the traffic and the beautiful buildings that Dana and her husband showed me. Dana invited some of the members of the Toronto Group to her home to meet me, and it was just great. Now, when I talk to them, I can put a face to them which is so nice.

Thank you Dana for your hospitality while in Toronto, I certainly appreciated it.

Then it was on to Ottawa and the presentation by Dr. Kaufmann. I was very disappointed in the turnout, but the results have certainly been positive. I was not feeling too swift that day, so unfortunately did not take down any notes to report to you. However, I am sure you all know that Dr. Kaufmann gave a very good presentation to those that were there on TN.

Robert Dunlop on behalf of the Association and the Ottawa members presented Dr. Kaufmann with a plaque. We hope that Dr. K will receive one from every province and major city in Canada before too long. If any of you would like to start a Support Group in your area, please let me know, and I will give you all the help and information you require.

It was great to see Sandra and Joe Arangio, Chris and Sonja Narinesingh and Allan Waxman, who came from Toronto for this presentation.

Here is a question that was brought up at the meeting by Keith Ennis.

Has anyone had the problem of not being able to get Carbamazepine in Ottawa or your area? Keith has been told by his pharmacist that an ingredient in Carbamazepine is not available at this time.

A very positive response came from a Dentist and hopefully early in 2005, we will be able to act upon her suggestion.

Until 2005

MERRY CHRISTMAS - JOYEUX NOEL– HAPPY HANUKKAH– HAPPY NEW YEAR

Marion

Dana from Thornhill wrote: The November TNAC newsletter is absolutely great, the format, the content, packed with useful info. and it's not too long. The TN stories with Dr Kiss and Rhizotomy are very uplifting and it’s good to see the follow-up.

Hi Patty
I have been a member of the TNAC from the beginning and also a telephone contact person. In the future I hope to start a support group in my area. I just returned from the TNA 5th national conference in Orlando. I am still overwhelmed with the amount of information and the caring attitude that was projected. I had the opportunity to meet Dr. Kaufmann several times during and after the conference and we are so lucky that we have him in Canada and part of the TNAC.

I was wondering if you and the other members would make available to us on the TNAC website pictures and a small write up of the board of directors, yourself, secretary /treasurer and Dr. Kaufmann. I personally enjoy writing someone if I have more that a name

I would like to thank you for the incredible job that you have been doing on the newsletters. I have to apologize for not doing my part as a survivor for the newsletter but in the very near future I will write you again and give you my feed back because without it, how do you now what we as survivors need and want. Right?

Thanks again. Laurie Simon, Ontario

I received this from Cathy White and this touched me so I thought I should share it... Patty

F A M I L Y

I ran into a stranger as he passed by,

"Oh excuse me please" was my reply.

He said, "Please excuse me too;

I wasn't watching for you."

We were very polite, this stranger and I.

We went on our way and we said goodbye.

But at home a different story is told,

How we treat our loved ones, young and old.

Later that day, cooking the evening meal,

My son stood beside me very still.

When I turned, I nearly knocked him down.

"Move out of the way," I said with a frown.

He walked away, his little heart broken.

I didn't realize how harshly I'd spoken.

While I lay awake in bed,

God's still small voice came to me and said,

"While dealing with a stranger, common courtesy you use, but the family you love, you seem to abuse.

Go and look on the kitchen floor,

You'll find some flowers there by the door.

Those are the flowers he brought for you.

He picked them himself; pink, yellow and blue.

He stood very quietly not to spoil the surprise,

You never saw the tears that filled his little eyes."

By this time, I felt very small,

And now my tears began to fall.

I quietly went and knelt by his bed;

"Wake up, little one, wake up," I said.

"Are these the flowers you picked for me?"

He smiled, "I found 'em, out by the tree.

I picked 'em because they're pretty like you.

I knew you'd like 'em, especially the blue."

I said, "Son, I'm very sorry for the way I acted today;

I shouldn't have yelled at you that way."

He said, "Oh, Mom, that's okay. I love you anyway."

I said, "Son, I love you too,

And I do like the flowers, especially the blue."

FAMILY Are you aware that if we died tomorrow, the company that we are working for could easily replace us in a matter of days. But the family we left behind will feel the loss for the rest of their lives.

And come to think of it, we pour ourselves more into work than into our own family, an unwise investment indeed, don’t you think? So what is behind the story?

Do you know what the word FAMILY means? FAMILY = (F)ATHER (A)ND (M)OTHER (I) (L)OVE (Y)OU

When I was in Ottawa, my sister-in-law had these yummy pickles and I just had to have the recipe and will share it with you for your Xmas pickle. Marion

4 English cucumbers sliced

1 large onion sliced

1 each red and green peppers diced (I only used a red pepper)

Brine:

4 cups sugar

2 cups vinegar

2 tbsp. Pickling salt

1 tsp. Celery seed

1 tsp. Mustard seed

Works well in gallon jar or ice cream pail. Layer veggies in Jar or pail.

In saucepan, add ingredients for brine as listed. Stir until sugar is dissolved. Bring brine to a boil and then pour over veggies. It will seem like you need more brine but you won’t since cucumbers shrink down in jar. Keeps in fridge for 6 months (if you let them).

Here is a chicken recipe that also includes the use of popcorn as a stuffing imagine that! When I found this recipe, I thought it was perfect for people, like me, who just are not sure how to tell when poultry is thoroughly cooked, but not dried out. Give this a try.

6-7 lb. chicken

1 cup melted butter

1 cup stuffing (Pepperidge Farm is good.)

1 cup uncooked popcorn (ORVILLE REDENBACHERS LOW FAT)

Salt/pepper to taste.

Preheat oven to 350 degrees. Brush chicken well with melted butter, salt, and pepper. Fill cavity with stuffing and popcorn. Place in baking pan with the neck end toward the back of the oven. Listen for the popping sounds. When oven door blows open and the chicken flies across the room, it is done.

Clara Greenberg, Montréal, 

Lois Henry, Winnipeg, 

Jim Nadler, Lethbridge

Robert Dunlop – Ottawa, On

Rosanne Borgfjord, Winnipeg, Man

Mona Wells, Lethbridge, AB

Zennon Malec, Lethbridge, AB

Walter VanWeerdhuizen, Drumbo, ON

Audrey Halowaty, Riverton, MB

Astrid Bierworth – Winchester Springs, On

Scott Fraser – Toronto, Ont.

Thomas Richter – Toronto, Ont.

Sonja Narinesingh – Toronto, Ont.

Laurian Nowitz – Toronto, Ont.

Ronald Russell – Calgary, AB

Choloe Brushwood Rose – Toronto, Ont.

Another new section is one for support groups. If you are unable to attend support group meetings in your area but would still like to participate, you can follow the group progress on-line. This is a new idea so we would appreciate your feed back.

.

Follow-up on the people who had a balloon procedure done on October 21, 2004

Jill - since she recovered from a giant cold sore, Jill feels great. No pain, no drugs and no numbness.

Ron – has some minor pains on an infrequent basis. He has burning sensations in his lips, a little numbness and some "plugged" feeling in his ear. However he thinks he is well on the way to recovery and is delighted with the results to date.

John – after a few left over pains the first week, John has not had any major problems. He has some numbness. He looks and feels great and is slowly weaning himself from the drugs. John says "Very interesting how an answer to prayer can come through a balloon being blown up in a guy's head by an excellent Surgeon! I haven't felt this well since 1991!"

Marilyn from Banff also had the Balloon treatment the same day. She has quite a bit of numbness to her face and eye. It is causing a dry and sore eye. However she has no TN pain and so thinks it is a good trade. With time she anticipates the numbness to subside and she can hardly wait.

Gary Bauer from Calgary had his story in the March 2003 Newsletter. He remains pain free since his 1998 MVD.

Betty and Ray Trudeau from Abbotsford, BC wrote their story in the July 2003 TNAC News. Both have remained pain free since their last Rhizotomies in 2000.

Bruce Cousins, Cochrane, AB had an MVD in 2000. He wrote his story in Nov 2003. Bruce remains pain free.

Gary Bannister, Ontario, told his story in April, 2004. He is still pain free since his 1999 MVD.

Bill Alderman, Niagara-on-the-Lake, wrote in May 2003. He had a Gamma Knife treatment and a total of 3 Rhizotomies. The last one was in 2000 and he is still doing great.

Helen Brown, Calgary, had an MVD in 1992. Today she remains pain free. Helen’s story is on our web site.

Jan Williams, Calgary

I began to have the symptoms of TN in June of 2001.  It was diagnosed immediately and I was put on Tegretal.  The Tegretal was effective initially but every few weeks I needed to increase the dose as the pain would return.  I experienced a number of side effects, sleepiness, tremors, difficulty thinking, disrupted speech patters and eventually liver damage.  I tried Neurontin and Trileptal and finally settled on a combination of Neurontin and Trileptal.  I didn’t seem to have any remissions and it became clear that increasing levels of drugs were in my future.  I started looking for another solution and my research uncovered Dr. Kaufmann and the Gamma Knife.  I was not too keen on the idea of major surgery at the time and the Gamma Knife sounded good.   After discussing things with Dr. Kaufmann, he recommended an MVD and feeling desperate to end the pain quickly I agreed.    I was given a date for the next month.

While waiting for the surgery date, I had an MRI.  I was really surprised to find out that there was a tumor sitting on that nerve.   But Dr. Kaufmann said I could keep the same date and he would remove the tumor plus do an MVD if needed at the same time so I was off to Winnipeg in November, 2003.

  I arrived on a Sunday, met Dr. Kaufmann for the first time on Monday, had some other tests and was set free until the next morning.  This was my first experience having surgery so it was quite interesting to say the least.  And not what I expected.   I remember waking up in the recovery room wondering what was on my legs!  It was those inflatable pants designed to prevent blood clots but I just found them annoying. 

I had expected to have a serious headache when I woke, but it wasn’t that bad and they were really generous with the analgesics.  By the next afternoon I was doing okay with just regular Tylenol.  I also thought I would have a really sore neck – but that didn’t happen.  The day of surgery I was kind of a slug and didn’t do much but I was up early the next morning before breakfast.  Actually I was keen to get rid of those pants and getting up was the way to do that.  By noon the first day I was able to say goodbye to the IV, the oxygen, the catheter and those pants.  I also was feeling well enough to walk down the halls and up and down a flight of stairs with the encouragement of the Physiotherapist.

  Although I had been told before that the drugs would be decreased and I would not likely have TN pain, I didn’t believe it – but it was true.   The first decrease was 300 mg of Trileptal and 600 of Neurontin – a third of what I was taking.  That really worried me because I used to get pain if I was even late taking a dose.  Almost right away some of the mental fog I had been in was lifted. 

  I was discharged from the hospital Friday and flew back to Calgary on Saturday.  The recovery was much faster than I expected.  Within 2 weeks I was off all drugs and actually felt great.  I had some problems with numbness – pretty much the whole left side of the face and scalp.  The numbness has decreased slowly over time so that I have only a small patch on the cheek, lower lip and gums remaining now.  Also I had double vision which took about 6 weeks to resolve.  But the best news of all is that I have no TN pain.  Occasionally I feel little twinges and tingles – but they are minor.

  My only set back during recovery was needing to have a pesky gall bladder removed 5 weeks after I got back to Calgary.    

  I really found the support of the Calgary group members to be invaluable during the recovery period and 2004 has been a great year.

So for anyone worried about the idea of surgery – take it from me it is not that bad.  This life without pain is fantastic and well worth the few days of discomfort.

Hello to all and I hope you had a great Thanksgiving. 

    I was really excited to see the response that we received from the Questionnaire in last month’s issue of the TNAC News. We are still receiving some daily so I will wait until the January issue before publishing any results. If you haven't sent in your questionnaire yet, please do so right away so that we can review them all before publishing the results. You can send them to me via email (pgmoyer@telusplanet.net) or mail to Marion Guzik at the TNAC address published here in the newsletter. If you do not have a copy of the questionnaire, please email me or write to Marion and we will send you one right away. Once again, thanks to all who have responded so far - it is wonderful to have your participation in this endeavor.

    I had a great suggestion from one of our members regarding the web site. She asked if it would be possible to put little bio's and photos of the board members on it. Please read about that elsewhere in the newsletter along with my response.

    If any of you have other suggestions regarding the newsletter or the web site, then please let us know. We take into consideration all ideas.

    I also had a suggestion from a member about publishing the newsletter and/or the web site in Canada's second official language of French. Unfortunately, at this time, this is next to impossible for us to do. My French is only barely passable and definitely not up to par for publication. But - if any of you have the time, the means, and the talent to take on this project - then please get in touch with either me or Marion so that we can discuss it. Even if you would be able only to translate the newsletter into French then let us know. If there are more of you who would prefer the newsletter and/or the website in French, let me know so that we can get an idea how viable this would actually be.

    That's all for this month. I hope you all have a wonderful Holiday season.

Patty