Volume 5, Issue 2

February 1, 2005 

    In Vancouver we like to think that we live in Canada’s Banana Belt, but the weather for our first official meeting was cold, the sky full of snow, and the roads slippery with black ice. Happily, this did not deter the 32 people who showed up on Saturday, January 15 to hear neurosurgeon Dr. Anthony Kaufmann’s talk: "Face Healing – Facts and Myths About Trigeminal Neuralgia."

    Dr. Kaufmann’s talk was fascinating. As Director of the Centre for Cranial Nerve Disorders in Winnipeg, home of Canada’s only Gamma Knife facility, we were eager to hear about Gamma Knife Surgery for TN. The Gamma Knife is a focused beam of radiation aimed at the source of the pain, "it’s a fancy way to create another injury to the nerve" said Dr. Kaufmann. And while it’s the least invasive and easiest of all the surgical options, it was useful to hear that it’s also the least effective over time. Or to put it more bluntly – and these are my words – the older you are the more attractive this option becomes. And it can be repeated.

    The great value of the talk for all of us was an authoritative context for reviewing options for our fallback plan when meds or surgeries fail. And it’s likely they will. Dr. Kaufmann told us that TN usually gets worse as time goes by; that there is a 50-50 chance that meds won’t work forever and that most surgical options have both limitations and consequences. For example, Trigeminal Rhizotomies don’t last indefinitely. Their potential downside is painful numbness depending on the severity of the injury.

    Dr. Kaufmann’s wide ranging talk touched on all the surgical choices as well as medications and mix and match options. His key message was that we should develop our "Plan B" while we’re in remission or coping. A full-fledged recurrence of TN is a crisis incompatible with doing research or making carefully considered, long-term decisions. Thanks to the lecture and a generous question and answer period, many of us are much clearer on pros and cons and are better equipped for designing our personal TN Emergency Response Plan.

    For sufferers who show up at hospital emergency, Dr, Kaufmann stressed that intravenous Dilantin will "hold" us for a time and can be combined with narcotics to suppress consciousness. One dilemma is that emergency physicians are not necessarily familiar with TN or this use of Dilantin; another, as one member of our group pointed out who has Multiple Sclerosis and multiple TN, is that not everyone can speak when crisis hits.

    Dr. Kaufmann suggested that the TNAC might produce a laminated card that communicates the "use Dilantin" message. It’s possible that this initiative may give sufferers more credibility with emergency dept. physicians. This would require careful thought and planning but appears to be an excellent suggestion.

    It came as no surprise to hear that two thirds of TN sufferers are told they have something else – diagnoses can vary from TMJ arthritis to psychiatric problems. Other pearls of wisdom included asking how many surgeries your surgeon does a year and the success rate. It’s important to know whether a 100 per cent success rate for Microvascular Decompression (brain surgery) applies to two surgeries or 100 surgeries. And always ask if hearing is monitored during an MVD. With monitoring, there is a one percent chance of deafness in the adjacent ear; without monitoring it’s ten per cent. Dr. Kaufmann does 50 MVDs a year.

    We need to educate and inform dentists and doctors as well as ourselves. This is a rare condition and it’s up to us to be proactive about our treatment. For example, not all doctors are aware that newer drugs like Neurontin (Gabapentin) can be used to treat TN if Tegretol (Carbamazepine) stops working or cannot be tolerated. So let them know.

    Speaking for myself, as I look back to my diagnosis in 1987 after I’d acquired a jaw full of expensive root canals, I can see that with more information I might have made a different choice and postponed surgery. It’s such a blessing to have today’s resources of TNAC, the Internet and an enlightened surgeon and gifted communicator like Dr. Kaufmann who reaches out to us.

    Now all we need is a volunteer team to carry it forward and a permanent place to meet. A big thank you to Cy Saltzman who made first contact and pulled us together last year, and to Ray Harvey and partner Joan Story who phoned and mailed everyone and the MS Society who publicized the event. I acted as coordinator.

    We’re privileged to be hosting dentist Dr. Sujay Mehta of the Orofacial Pain Clinic at the University of BC on February 25. If all else fails, said Dr. Kaufmann, "the likely next step is a pain clinic and their magic medicines." So come and listen to pain clinic expert Dr. Mehta on February 25. His topic: "Understanding Trigeminal Neuralgia and Neuropathic Pain." Time: 1.30 – 4 pm. Place G.F. Strong Rehab Centre, 4255 Laurel St., Social Services Seminar Room #189 Main Floor.

    Heartfelt thanks to TNAC President Marion Guzik for arranging this opportunity, and above all to Dr. Kaufmann who made this trip from Winnipeg especially to talk to us. Now that’s dedication! So many of us have wised that we’d had an extra ten minutes with a neurologist or surgeon -- this was the most wonderful opportunity to ask questions and get feedback. We’re all enormously grateful.

Submitted by Ann Hopkins

On behalf of the Vancouver & Lower Mainland TNAC Support Group.

    In November of 2004 the Alberta Radiosurgical Center opened at the Foothills Hospital in Calgary becoming the first site in Canada to offer the "Novalis Shaped Beam System". This technology allows doctors to remove tumors in the brain, spine, prostate, liver and lungs. The advantage of this Novalis system is its ability to modify the shape of the radiation beam to more closely match the shape of the tumor. Other machines like the Gamma Knife have a set circular shaped beam.

    Initially the ARC will give top priority to patients who have cancerous brain tumors. In fact over 30 patients have already been successfully treated since the center opened in November.

    Dr. Peter Craighead, Medical Director of the center says that they are now ready to start treating other patients including those with Trigeminal Neuralgia. Treatment for TN would be a single session with a high dose of radiation directed precisely to the Trigeminal Nerve. A frame is attached to the head by your neurosurgeon so that exact measurements can be made using CT scans with the frame in place. The doctors use a computer to program the exact shape and amount of radiation needed. The treatment itself is painless and is done on an outpatient basis.

    The results of TN treatment by the Novalis system match those of the Gamma Knife with about 58% of patients experiencing excellent pain relief and another 36% having "good" pain relief. Since the Novalis and the Gamma knife are both relatively new treatments, long term studies have not yet been completed.

The ARC is available to all Canadians. Physicians can make referrals to the center via their web site: www.albertaradiosurgery.ca. There is general information for patients and health care providers on this site.

    The TNAC is starting the New Year out right with the formation of a Support Group in Vancouver. Ann Hopkins, Ray Harvey and Cy Saltzman are to be congratulated for all their hard work in making this happen. We welcome you to the TNAC Express. Hopefully, we will be able to welcome more Provinces this year.

    Our Lethbridge Support Group held our Xmas Party on January 8, and we all had a good time. The food was absolutely delicious. Thanks to all our members and their spouses for making this an outstanding day.

    Being the first month of the year, I don’t have anything to report as yet, except that it has been very cold in Alberta. We have had quite a bit of snow, but our Chinook has taken it all away, till our next snowfall. The rest of Canada, especially the Maritime Provinces where they have had their 3^rd blizzard in 7 days, and to the Province of BC where they have had snow, but most importantly the mudslide, which claimed a life. Ontario, Saskatchewan, Manitoba have all been hit by the snow in one form or the other, but I feel that we are very fortunate to be living in Canada and not in Asia, where there the tsunami disaster occurred. Our hearts and prayers also go out to these people.

Until next month, I hope you keep pain-free.

Marion

Trileptal is used to treat seizures, mood disorders such as a bi-polar disorder and neuropathic pain like Trigeminal Neuralgia. It is a derivative of carbamazepine (Tegretol), and also very similar to gabapentin (Neurontin). It works by decreasing impulses in the nerves. Trileptal appears to work faster than Tegretol and seems to cause less drowsiness

Trileptal  (oxcarbazepine) should not be used in patients with a known hypersensitivity and/or allergy to oxcarbazepine or to any of its components.

Although it's not known for sure, there is good reason to believe that Trileptal can cause birth defects. Therefore this drug should not be used if you are pregnant or are planning to become pregnant.

Trileptal appears in breast milk and could cause serious side effects in a nursing infant. Women who are breast feeding should not take Trileptal.

Trileptal can decrease the effectiveness of hormonal contraceptives (birth control pills). Another form of birth control should be used.

Hyponatremia (a low sodium level in the blood) can develop during Trileptal use. This usually appears during the first 3 months of use although in some people it can appear later. For this reason it is essential that anyone on Trileptal have regular blood tests to monitor the serum sodium levels. Signs of low levels of blood sodium include nausea, extreme drowsiness and discomfort, headache, confusion, or dullness.

Oxcarbazepine may increase the effects of other drugs that cause drowsiness, including antidepressants, alcohol, antihistamines, sedatives (used to treat insomnia), pain relievers, anxiety medicines, and muscle relaxants. Dangerous sedation, dizziness, or drowsiness may occur if oxcarbazepine is taken with any of these medications.

Do not drink alcohol while taking oxcarbazepine. Alcohol may increase drowsiness or dizziness caused by oxcarbazepine.

• For TN, normally the drug is gradually increased to 600 mg per day in two doses of 300 mg. The maximum daily dose is recommended to be 2400 mg.

• Take each dose with a full glass of water.

• Oxcarbazepine can be taken with or without food.

• It is important to take oxcarbazepine regularly to get the most benefit.

• If the medication needs to be stopped, the drug should be gradually withdrawn.

• You should have blood tests regularly during treatment.

• Carry or wear a medical identification tag to let others know that you are taking this medicine in the case of an emergency.

• Store Oxcarbazepine at room temperature away from moisture and heat.

Note: The TNAC questionnaire results on Trileptal: 3 participants out of 29 have tried Trileptal. Effectiveness ranged from Good to Excellent. Side effects were Tremors (1), Spasms (1), Drowsiness (1), Weight gain (1) and none (1).

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on Feb 15, 2005 at Confederation Park Senior Centre; 2212 13^th St. NW. Contact Jan at 403-295-0987 or jan.williams@shaw.ca .

We will have a guest speaker at this meeting.

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, Feb 12, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. Contact Marion Guzik at 403-327-7668.

The Toronto Support Group will meet on Feb 27, 2004, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. Contact Dana Lavrence at 905-886-7563

Next Meeting, February 25, 2005 Time: 1:30 - 4 p.m. Place: G.F. Strong Rehab Centre, 4255 Laurel St., Social Services Seminar Room # 189, Main Floor. For further information please contact: Ann Hopkins - Ph. 604-732-1673 - email: annhopkins@shaw.ca

Guest Speaker: Dr. Sujay A. Mehta, Orofacial Pain Clinic, University of British Columbia. The topic will be – "Understanding Trigeminal Neuralgia and Neuropathic Pains."

IN MEMORY OF HEATHER SCULLY: John and Terry Scully. Ottawa, On.

Lois Henry – Winnipeg, Man.

M. Lillian Rideout – Red Deer, AB

Elizabeth Blake – Williams Lake, BC

Lynn Povey – Holland Landing, Ontario

Ray Harvey- Vancouver, BC

Poppy Dawson – Richmond, B.C. Poppy had a Radiofrequency Rhizotomy in January by Dr. Chris Honey, Vancouver General Hospital, and is doing very well.

Picture of Dr. Kaufmann receiving plaque from Robert Dunlop with Marion Guzik looking on.  This was taken at the Ottawa seminar in October 2004

I close my eyes not tight but enough to keep out even the darkness.

The slight movement of the drill bit leaves my body in a coil ready to spring.

The bit moves and has lodged itself repeatedly in one spot, sitting on a rough nerve, twisting violently.

Fireworks leave the tip of the drill and explode, covering the side of the face with extreme pain.

I am frozen for what feels like an eternity.

The drill is removed and I open my eyes.

I am lying in a ball in the middle of the bed in the dark, and alone.

It has become my shadow.

It is my dark figure projected by something that intercepts the rays of light.

It has followed me through my childhood and in to my daughters ballet recital.

It was watching closely as my son ran his winning race.

It is here now when my husband reaches to hold my hand.

I want to comfort the ones around me and tell them it is going to be ok.

But I know that our hearts are one and we all feel the casting of the shadows.

And hope for the ray of light.

Laurie Simon

Dissolve small pkg. of Orange Jell-O (or any flavor) thoroughly in 6 oz. of boiling water.

Add 6 oz. of fruit juice (apple). Stir in 1 small container of yogurt (any flavor).

Put in oblong dish. Let cool. Chill in frig until set.

Can be doubled if desired.

This dessert was very well received at our Christmas Party and everyone enjoyed it, especially Zennon.

Some comments received on the recent questionnaire:

"The book Striking Back was very helpful for me – I cried all the way through it. I loaned it around to family so they could understand better what was happening and what the surgery options were."

"I function very well on Trileptal. I only wish I could afford it."

"My TN seems to be changing from atypical to a more typical presentation."

"Fall and winter seem to be the time frame that is the worst for me."

"I think having a place to go for support like TNAC and TNA is the greatest thing. It's nice to know that others are in the same boat. Misery likes company as they say. When I first found out I had TN there was so little information I could find but now with the Internet there is so much out there and that is great. By the time I had my first episode I had been playing the flute for 25 years. I don't know if that had anything to do with the cause but I didn’t have trouble playing without being in pain. I just had my second procedure done so I am happy to say that I've been pain free and meds free since then. I found the procedure a bit more painful this time and if/when the pain comes back I would have to really think hard before I had it done again because of the pain but I must admit it's so nice not to have the constant pain."

"I have really only had 3 bouts of serious TN. However, it is very bad right now and I have not been able to wear makeup, wash my face or hair. Sure hope to get relief soon. My new Neurologist is increasing my Gabapentin so hopefully it helps. Looking forward to talking to other people and see how they cope. Thank you Marion for the information."

We went to breakfast at a restaurant where the "seniors’ special" was two eggs, bacon, hash browns and toast for $ 1.99.

"Sounds good," my wife said, "But I don’t want the eggs".

"Then I will have to charge you two dollars and forty-nine cents because you’re ordering a la carte", the waitress warned her.

"You mean I’d have to pay for not taking the eggs?" my wife asked incredulously, "I’ll take the special."

"How do you want your eggs?"

"Raw and in the unbroken shell," my wife replied.

She took the two eggs home.

DON’T MESS WITH US SENIORS!!!!!!!

By Astrid, Ottawa

    The pain started the week of Aug. 15/04 as a mild ache in my left jaw. My first thoughts were that I had been either clenching my teeth during the day or grinding my teeth at night. On Sunday night I noticed a rough spot in the top very back molar on the left side and figured that was the problem. Monday I called the dentist. I got an appointment for Tuesday at 1 p.m.

    On Monday night, Aug. 23, I was just laying down to sleep, when I was hit with worst pain in my life on the entire left side of my face, right to the bone. Every time I got up, the pain subsided somewhat. Every time I lay down, after about 10 minutes, it hit with a vengeance. So I never slept at all that night.

    The next day, not only did I have the toothache that came & went, but also every now and then I got this attack of major pain on the left side of my jaw.

    The dentist examined me, and said yes, there was a small chip out of that molar, but that was insignificant and not causing my pain. As a matter of fact, he said the pain was not tooth related. He said it was either Trigeminal Neuralgia or Shingles and to see my doctor right away.

    After examining me and asking a few questions, the doctor said I have Trigeminal Neuralgia. I had never heard of that before. He said it is treated with anti-seizure medication and this works very well. He said it is caused by a virus and goes away in a few months. He also gave me a prescription for Tylenol 3 and Tegretal. He told me to start the Tegretol with 2 pills a day and keep increasing until the pain goes away.

    At home I looked it up on the net. I was not impressed. The information said that it goes & comes for life. It usually hits after age 50. The first line of treatment is anti-seizure drugs but if that doesn’t work or the patient does not want a lifetime of drugs then surgery is an option. It said it was the worst pain known to medicine. My doctor seemed to be a bit out of touch with reality according my research.  

    I started on the Tegretol that very night. The Tylenol 3 didn’t help at all. By Thursday the drug was putting me to sleep. The doctor had said to increase them; he didn’t say to do it slowly. I took 3 pills on Thursday. I finally had to quit working and go to bed in the afternoon. By Saturday the pain was gone, but there was still a fog in my brain. By this time I was on 2 pills a day (my pharmacist suggested dropping back). A week later I saw the doctor again and he said to cut back to 1 ½ pills a day. I did that, and the fog left my brain. The pain did not return. I was weaned off the drug by the end of October.

    Around the end of November, I started getting some toothache like feelings again. By this time the molar which needed fixing was due to be fixed on Dec. 22, and not being sure if this was causing the problem, I started with ½ Tegretol a day. The tooth pain went away. Close to Christmas, it came back, so I upped it to two ½ pills a day. Again it went away. It looks like I was hit by a second, but relatively minor TN episode. I have now weaned off Tegretal again, just to see what happens. There is some very minor pain, so I am not going to take any action unless it gets a lot worse. The dentist started doing a root canal on the molar because he said the nerve was dead, but ended up having to pull it out because it was cracked right through.

    The mild toothache-like type pain is probably something I can live with once in a while; it’s the major attacks of pain - like an electric shock, that I have trouble dealing with. The next time I see my family doctor, and ask for a recommendation to see a neurologist.

    Some of the different types of surgeries, especially the nerve damage procedures scare me with their possible complications and I’m not sure I really want to go there. For now, I am just going to see what happens and if this can be controlled by medication. Now that I know a bit more about the disorder and the way the drug affects me, I can control things a bit more. Not knowing what was going on at the beginning was the worst thing.

One of the places on the internet I found the most helpful was the TNAC web site. The link to Dr. Kaufmann’s site provided a lot of information. I met Jan through the forum, and in October we met in person when she visited Ottawa. It was really great to put a face to the name. She has been a tremendous help on line and I found her to be a very cheerful person when I met her. She brought with her the book "Striking Back" which I purchased and I found this to be probably the best resource of all.

    I’ve been very busy this past month renovating my bathroom. It’s been quite a challenge to say the least. I’ve very quickly learned how to strip wall-paper, repair old drywall, re-grout tile, install new ceramic tile, cut and install a new countertop, and install a new light fixture. It’s been fun though. When I was just a teenager my dad told me that ‘just because you are a girl doesn’t mean that you can’t do things that are traditionally men things". That was when I asked him to do major repairs (a ring and valve job) on my first car. He then gave me a list of parts to purchase and he stood beside me and instructed but I was the one who did the actual engine repairs. It was a very good lesson that he taught me. Of course, back then our cars didn’t have all the fancy computers and such of today. I think that lesson must be why my jobs for most of my life have had to do with Long Haul Trucking, Construction Work, Heavy Equipment operation, Landscaping, etc.

    Take it from me – we, as human beings, are capable of doing whatever we wish if we put our minds to it. If we don’t know how or have never done ‘it’ before, there are hundreds of resources available either on the internet or at your local library and there are also vast arrays of magazines available which are devoted to almost anything. So, if there is something you wish to accomplish in your life, no matter what it is or what your age, you CAN do it! As my husband (a Dodge mechanic) says – Get out there and ‘Grab Life by the Horns’.

    Take care and everybody have a wonderful February. Happy Valentines Day to you all.

Patty

"Happiness is not the absence of problems, but rather the ability to deal with them."