THE TN NEWS Published by: The Lethbridge Chapter
May 1, 2004
Volume 4, Issue 5
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 sufferers 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 May 8th, 2004
2:00 p.m. @ Senior’s Centre
Saturday June 12th, 2004
2:00 p.m. @ Senior’s Centre
IMPORTANT NOTE:
DUE TO THE MANY VIRUS’ THAT ARE FLOATING AROUND ON THE INTERNET, IF YOU EMAIL MARION, PATTY OR TNAC.ORG PLEASE PUT IN YOUR SUBJECT LINE: TNAC INFORMATION.
NOTE:
Is there any special information that you would like to see in upcoming issues of the TNAC News? Such as articles on different treatments, surgeries, etc. Maybe something about dental health while your TN is especially bad? Or a list of some good TN web sites or other reference sites to check out? There is a lot of information available but it would really help me to know what you want to read. Please email Patty with your newsletter input requests & I will see what I can come up with. I need to know what you want to read in the newsletters. I want to make them interesting & informative for everybody. Thanks very much.
Marion’s Desk
I want to thank all the members and non-members of the Lethbridge TN Support Group who so graciously donated to our first raffle. We drew the names of the winners at my home on April 30, 2004, and are as follows:
1st Betty Friesen
Handmade Queen Size Quilt
2nd Desi Cook,
Handmade Queen Size Afghan
3rd Gwen Edwards
Hand Tooled Ladies Purse
4th Julie Watson
Handmade Lap Size Afghan
A big thank you goes out to Homestead Village for allowing us to set a table up in their Mall, and to the members who so willingly donated their time, and for selling the books of tickets which was very much appreciated.
I am very pleased to let you know that we made $867.00 less $47.39 (license, printing, newspaper ad) for a total of $819.61. That, I think, was very good for our first major fundraiser. Thanks again.
HAPPY MOTHER’S DAY
Marion
RECIPE
Orange Dream Cheesecake (from Kraft’s What’s Cooking Magazine)
1/4 cup Graham Crumbs
2/3 cup boiling water
1 pkg. (85g) Jell-O Orange Jelly Powder
1 cup cottage cheese
1 tub (250g) spreadable Cream Cheese
2 cups thawed Cool Whip
Sprinkle crumbs onto bottom of 8 or 9” springform pan or 9” pie plate sprayed with cooking spray.
Stir boiling water into jelly powder in large bowl at least 2 min. till completely dissolved. Cool 5 min. Pour into blender container. Add cheeses, cover. Blend on medium speed till well blended , occasionally scraping down sides of blender container, pour into large bowl.
Add whipped topping, stir gently till well blended. Pour into prepared pan, smooth top with spatula. Refrigerate 4 hrs. or till st. remove side of pan just before serving. Store leftover cheesecake in fridge.
Makes 8 servings.
Garnish with fresh mint sprigs or peeled orange slices if desired.
GAMMA KNIFE A COUP FOR CITY
New Surgical Device Zaps Brain Tumours (by Mia Rabson)
Two months ago, Claude Faucher lay down on a high-tech gurney, had his head bolted into place beneath a helmet that looked like the remnants of a Star Wars droid, & was zapped 14 times with beams of radiation.
Although he admits it felt like he was playing a role in a sci-fi flick, he was actually undergoing gamma knife surgery to remove a benign tumour in his brain.
The procedure attacked the tumour without causing pain, without drawing blood, and, despite the gamma knife moniker, without an actual knife. “It feels like maybe they’re doing nothing,” Faucher said.
The gamma knife focuses 201 sources of radiation on the helmet through the tumour without hitting surrounding brain tissue. If the procedure is successful, the radiation will kill the tumour’s DNA, stopping its growth & sometimes shrinking it.
ONE OF FIRST
Sedation is not necessary & side effects are almost non-existent. Results are not always 100% & some patients still need further treatment, but that’s a risk Faucher was willing to take.
He is one of the first 100 patients to undergo gamma knife surgery in Canada. He came to Winnipeg to be treated by the only such machine in the country & one that is drawing attention & respect to a city not always recognized for its medical prowess.
Neurosurgeons Dr. Michael West and Dr. Anthony Kaufmann are Winnipeg’s gamma knife gurus. Initially, they thought perhaps 120 patients would go under the gamma knife in its first 12 months of use. Now they think it will be closer to 300.
“We’ve exceeded most of our initial expectations,” West said. “And there is the potential to do considerably more.”
The gamma knife, a $6-million purchase, has become a bit of an icon for the provincial government, an expensive election sign if you will. Announced, reannounced & reannounced again, the NDP believed the investment bought it political capital as well as a state-of-the-are medicine. On the latter, at least, they appear to be right.
West & Kaufmann speak of the gamma knife almost as humble but proud parents. The two native Manitobans were lured back to Winnipeg - West from Cleveland & Kaufmann from Calgary - in part because a gamma knife was coming to the city. And they say it, along with other investments in neurosurgery, is bringing patients, doctors & hospital administrators to Winnipeg.
RECOGNITION
“More residents are coming to interview here,” said Kaufmann. “People recognize Winnipeg’s neurosurgery program is advanced in many ways.”
In addition to the gamma knife, Health Sciences Centre is home to a $2-million neurangiography machine & about $7-million in other investments for equipment & staff training.
Faucher, a staff sergeant with the RCMP in Sudbury, Ont., was diagnosed with acoustic neuroma, a tumour on a cranial nerve between the brain & the inner ear, in 2002. Upon diagnosis, the tumour was only five millimetres in size. But a test six months later showed it had grown to 1.2 centimetres & could no longer be left alone.
Had he gone through conventional brain surgery, he'd have been in the operating room for 8-12 hours, in the hospital for at least a week or two, & away from work for up to two months. But with the gamma knife technology, he was able to fly to Winnipeg on a Tuesday, have the procedure Wednesday, fly home Thursday & be back at his desk on Friday morning.
The treatment itself lasted 34 minutes, though he spent about 7 hours at the hospital. He had MRI & CT scans first. Results of those two tests were fed by doctors into a computer, which set the gamma knife to beam its rays at the right spot on his brain.
Procedures can last anywhere from 10 minutes to two hours, depending on the size & shape of the problem. A gamma knife can treat patients with benign & malignant tumours, facial nerve disorders & tangles of blood vessels known as aneurysms.
Not everyone is eligible. The maximum size of a tumour that can be treated this way is 3.5 cm. “The whole principle is to focus radiation on the target without hitting the brain tissue,” Kaufmann said. “If the tumour is too large, you hit more brain tissue with the radiation.”
After the procedure, the tumour remains in the brain, but it is dead.
Kaufmann says Canada is about 10 years behind the United States in the use of the high-tech device.
He said many Canadian doctors don’t include gamma knife procedures in their list of possible treatment courses for their patients. In many American centres, not considering using the gamma knife would be viewed as bad judgement, Kaufmann said.
“I think that will change in Canada,” Kaufmann said. “I think we’ll be treating more, and more often.”
And doctors from Toronto, Montreal and other cities are coming to Winnipeg to see it in action. West says Toronto is likely to get a gamma knife soon.
Faucher won’t know for six months what the results of the procedure are. He will have a test in June to find out whether the tumour grew, shrunk or stayed the same size.
But he says it was worth it.
“They looked after me. They were great,” he says. “I’d definitely recommend it as opposed to brain surgery. It was so much easier.”
mia.rabsom@freepress.mb.ca
NOTE: The above article was in the Winnipeg Free Press, April 4, 2004, and was received from Pat Pozerniuk of Winnipeg, Manitoba. Thanks Pat.
Happy Birthday’s To All With May Celebrations.
DONATIONS FOR APRIL
Dorothy Shields—Vancouver, B.C.
Amy Kohnke—Dawson Creek, B.C.
Denise Mallette—Grand Forks, B.C.
Helen Amos—Burlington, ON
NEW MEMBERS FOR APRIL
Valerie Lewis—Toronto, ON
Didi Berger—Whitby, ON
MY TN STORY - VALERIE LEWIS, TORONTO
My TN started over six years ago. I was washing my hair in the
shower one morning when this incredibly painful lightning bolt
seared across my scalp and forehead. I thought I was having an
aneurism or something. These "spasms" started coming more
frequently and more became more severe that it got to the point
I couldn't touch my face, washing my hair was a nightmare.
Brushing my teeth, blowing my nose and worse crying made brought
the spasms on with a vengeance.
I went from doctor to doctor, neurologist to neurologist, only
to be told there was nothing wrong. My own GP kept telling me it
was stress and migraines. Even with the MRI scans showing a
venous anomaly doctors kept telling me there was no problem.
Finally I found a neurologist and neurosurgeon who confirmed TN.
This took almost two years. I had been off work on disability
and was so heavily medicated that there are major gaps in my
memories of those years. Unfortunately those gaps don't include
the memory of the pain. In '99 I had Balloon Compression surgery
and was somewhat painfree for a year. However it seems the
surgery caused Anesthesia Dolorosa which I still battle with to
this day.
In 2002 I had Gamma Knife Surgery in Pittsburgh. This gave me
approximately nine pain free months before the spasms started
again.
Thankfully I found Dr. Kaufmann and just had MVD surgery in
March '04. He found two arteries pressed up against the nerve
that couldn't been seen on the MRI. It's been three weeks and
with my fingers and toes crossed so far so good. No spasms, no
pain. The headache and full feeling in the ear that is expected
after the surgery get less and less and every day. He of course
can't guarantee that the venous anomaly won't cause me problems
in the future but we both feel confident that he took care of
the culprits that were causing my spasms.
Thanks to Dr.
Kaufmann every day I get closer and closer to get my life back
after battling with this nightmare for over six years. I am off
my narcotics and am slowly dropping my levels of my other meds.
My summer is looking brighter and brighter each day.
Valerie Lewis
vlewis@rogers.com
Please Log On To Our Website:
www.TNAC.org
We are pleased to announce an updated version of our web site. There are a couple of new pages for you to check - look at the Support Groups for a list of the support groups across Canada. We hope this list grows until we have a support group in each major city.
Check out the "calendar" for a list of dates of meetings and, when available, special events. We are also collecting TN stories for the web. You can either send them to us or add them yourself using the "Message Board" The "Message Board" is a new feature where you can post comments, questions or your own TN story directly on-line. The Message Board opens into a new window and when you are done closing the window will jump you back to the TNAC site.
Here is how to use the Message Board/Forum:
When you wish to post a reply or start a new topic, you can do it either as a guest (no name) or as yourself - (we hope you choose this route). In either case you can read all the entries and post a reply if you wish.
Step one - register. See the top right hand corner and select "register"
Your name can just be your first name, an alias, or nickname. If someone else uses your name then you will need to select another. So if you are the first "Marion" - you can use that, but if someone else already has that name then you need to use something else - like MarionG or Marion01.
The password is just for this site - it does not need to be the same as your normal e-mail password.
When you finish filling in the form, you can then log on and each time you post a message your name should appear. (On the most recent message I forgot to log on first so my answer to the question appears as a "guest")
Step two - log on
That is it.
SUPPORT GROUP MEETING NEWS
CALGARY, Alberta:
Monthly meeting 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 on May 18th, 2004. Please mark your calendars for this date. For further information, please contact Jan Williams at 403-295-0987 or email TNAC Calgary Group at tnaccalgary@hotmail.com.
TORONTO, Ontario:
The Toronto Support Group will meet on Sunday May 30th at 10:00 a.m. at Thornhill Community Centre, 755 Bayview Ave., Toronto, Ontario. There will be a guest speaking on Cranial-Sacral Therapy.
Please mark your calendars for this date. For more information, please contact Dana Lavrence at 905-886-7563.
WINNIPEG, Manitoba
The Winnipeg Support Group is looking for a new Support Group Leader due to the resignation of Marion Hucul. Anyone who is willing and interested in the forming of this Support Group, please contact Marion Guzik, Pres. TNAC at 403–327-7668 or email at president@tnac.org. This can be and is a very rewarding experience.
LETHBRIDGE, Alberta:
The next Lethbridge Support Group meeting will be on Saturday, May 8th, 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.
RICHMOND, B.C:
Good news for members of the TNAC in B.C. A pilot Support Group Meeting has been held in Richmond, B.C. The next scheduled meeting will be sometime in mid June. Notice will be given when & where this meeting will be held so watch for this announcement in the TNAC News next month. For more information, please contact Barry Martin at 604-275-4799 or Raymond Trudeau at 604-852-8263.
**********************************************************************
Funnies………
Wrong Email Address
A couple from South Dakota decided to go to Florida for a long weekend to thaw out during one particularly icy winter. They planned to stay at the very same hotel where they spent their honeymoon 20 years ago. Because both had jobs, they found it difficult coordinating their travel schedules.
It was decided that the husband would fly to Florida on a Thursday & his wife would follow him the next day.
Upon arriving as planned, the husband checked into the hotel. In his room there was a computer so he decided to send his wife an e-mail back in Minneapolis. However, he accidentally left out one letter in her address, & sent the e-mail without realizing his error.
In Houston, a widow had just returned from her husband’s funeral. The dearly departed was a minister of many years who had been called home to glory following a heart attack. The widow checked her e-mail, expecting messages from relatives & friends, & upon reading the first message, she fainted.
The widow’s son rushed into the room, found his mother on the floor, & saw the computer screen which read:
To: My Loving Wife - Subject: I’ve Arrived
I know you are surprised to hear from me. They have computers here now and you are allowed to send e-mails to your loved ones. I’ve just arrived and have been checked in. I see that everything has been prepared for your arrival tomorrow. Looking forward to seeing you then! Hope your journey is as uneventful as mine was.
P.S. Sure is hot down here!
TN or NOT TN?
TN is just one of dozens of disorders that can cause pain in the face. It would be easy if everyone’s symptoms fit into neat little boxes, each with a specific name tag. Then it would be a simple matter of matching the treatments that go along with each disorder.
Unfortunately, face pain is not a problem that always fits into those neat boxes. Very often patients will describe some symptoms that fit into “Box #1” and some symptoms that seem to fit into “Box #2”.
Does this mean these people have a little bit of both? Do they have two separate & distinct conditions going on at the same time? Or do they have some hybrid condition that we just haven’t named yet? It could be any or all of the above.
Patients tend not to really care a whole lot about what label their pain is given. They know they hurt & they just want to get rid of the pain. But it’s important to get a handle on the exact nature of the pain - even if there’s no name for it - because the treatment outcomes vary with the type of pain. A wrong treatment for the wrong problem can actually make the pain worse.
Let’s take a closer look at what this means in cases of suspected TN.
Joe and His Atypical Pain:
Let’s say patient “Joe” goes to his doctor complaining about these sharp spikes of pain that are wreaking havoc on the right side of his face. As in classic TN, these stabs come & go & are always on the same side, never crossing the midpoint of the fact.
However, Joe also says he has a burning pain that’s more constant - kind of like a back-drop against those fleeting sharper stabs. And he says he doesn’t really notice any trigger points that seem to set off those sharp spikes. It’s not exactly a classic case of TN. But, what is it then?
Some doctors would say Joe has TN bad enough or long enough that it’s causing lingering pain beyond the sharp stabs. Other doctors would argue that Joe has two things going on - TN & a related form of TN often called “atypical trigeminal neuralgia”. Still others would lump the two together & say Joe is an example of a kind of “continuum” that can exist between classic TN & atypical TN.
Whatever you call it, it’s not unusual for patients to have a blend of both types of pain with some falling a little closer to one end of the spectrum & some falling closer to the other end.
Sorting out the “Atypicals”
Dr. J. Keith Campbell, emeritus Professor of Neurology at the Mayo Medical School in Minnesota, says atypical cases are not nearly as well understood or managed as classic TN cases. Those with classic cases tend to respond much better to classic TN treatments such as carbamazepine (Tegretol) and they tend to have higher success rates from surgery, says Dr. Campbell. “If you have classic TN you are on more certain ground” he says.
There is much debate & uncertainty about the underlying cause of atypical pain - or “atypical facial pain” as it’s called when the pain strays far enough away from classic TN symptoms.
Dr. Peter Jannetta, the Pittsburgh neurosurgeon, believes many of these cases are ‘variations on the theme’ of classic TN. He says when he operates on people with atypical pain, he often finds blood vessels compressing on the trigeminal nerve - just as in those with classic TN symptoms. He says microvascular decompression surgery has helped about half of his atypical-pain patients. Patients with a combination of sharp, stabbing pain & a background of constant burning pain often find surgery helps the sharp pain but not the burning pain.
Some doctors theorize that the more the symptoms stray from classic attacks into the murkier constant pain, the less likely it is the person is suffering from TN. That doesn’t make the hurting any less real. It can make finding a solution more elusive as the treatment plan boils down to trying one possibility after another until hopefully one of them works.
The Hallmarks of Atypical TN
Those with atypical TN tend to be younger than the average neuralgian with classic symptoms and – like classic TN – they tend to be female more often than male. Dr. Jannetta says that these people usually have no memorable first attack because the pain almost always comes on gradually. Some slight numbness or other sensory loss often occurs along with the pain, he adds.
Atypical cases most often involve the cheek and upper jaw and sometimes the lower jaw. . It rarely strikes the eye/forehead branch alone. Occasionally, the pain even migrates to areas outside that served by the trigeminal nerve, such as behind the ear or down the back of the head and neck.
The pain may or may not be triggered by touch, but when it is, it’s not unusual for the trigger zone to be inside the mouth. That area is not a common trigger for classic TN. Patients with this type of pain tend to describe it more as “aching,” “burning”, or “throbbing” as opposed to “sharp”, “stabbing”, or “electric-like”.
A patient’s response to short-acting anesthetic injections at different points around the face and the response to anticonvulsant medications also can help zero in on exactly what type of case it is. Anesthetic injections typically work better on atypical pain than classic TN. However, anticonvulsants usually are more effective against classic TN than the atypical pain.
Treating Atypical TN
The closer an atypical case is to classic TN, the better the chance that the usual TN medications will work, says Dr. Campbell. The more atypical the symptoms, the better the chance that other types of medications will work.
Many atypical-pain patients have found relief from anti-inflammatory medications – including steroids – and from injections of local anesthetics. Also helpful have been serotonin-blocking, anti-depressant medications, such as amitriptyline (Elvil), sertraline (Zoloft) and parozetine (Paxil).
Some patients recently have found relief from the new anticonvulsant gabapentin (Neurontin). which is effective sometimes for burning nerve pain. This medication also is now being used to treat classic TN as well.
Atypical cases also may respond to some of the “alternative” treatments such as acupuncture, hot-pepper cream, TENS units or chiropractic.
Ohio oral surgeon Dr. Wesley Shankland says he has helped about 65 percent of his atypical TN patients with a combination of anti-inflammatory injections of the trigger zones (usually betamethasone sodium phosphate) and oral anti-inflammatory medication such as methylprednisolone (Medrol). Sometimes he adds the muscle-relaxant baclofen (Lioresal) as well.
If none of this helps, the same lineup of operations used for classic TN are options for atypical sufferers. However, the success rates in atypical cases are significantly less than those in classic cases. Depending on the underlying cause of the pain, surgery may even worsen the problem. Pain that relates to a damaged nerve, for example, usually gets even when more damage occurs through surgery.
For these reasons, it behooves a patient to make sure they’ve ruled out all of the less invasive options before moving on to the more aggressive options.
Information taken from our Handbook “Striking Back”.
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Food For Thought - Submitted by Marily Najm - Banff
-Ever notice that the people who are late are often much jollier than the people who have to wait for them?
-If ignorance is bliss, why aren’t more people happy?
Peanuts - Submitted by Jan Williams - Calgary
A visitor goes to a nursing home to meet an elderly woman. He notices a bowl of peanuts beside her bed. He takes one. As they talk, he can't help himself and eats one after another. By the time they are through talking, the bowl is empty. He says, "Ma'am, I'm so sorry, but I seem to have eaten all of your peanuts" .
"That's okay" she says. "They would have just sat there. Without my teeth, all I can do is suck the chocolate off and put ‘em back in the bowl".
Patty’s Ponderings & Miscellaneous Ramblings:
Hi everyone. Hope you all are enjoying the spring so far.
As you all should know by now, our web site is up, running and doing well. We have a counter on the site now and the numbers of people viewing the site is growing daily. There is a bulletin board on the site also where you can post messages or your TN story. Check it out!
My oldest daughter is scheduled for major surgery tomorrow morning and I’ve been spending the past couple of weeks helping her organize everything. She’s a single mom so there has been lots to look after to make sure things will run smoothly both in her absence and next week after she arrives back home. We are thinking positive for her recovery.
I hope all of you have a great month of May and Happy Mother’s Day to all you mom’s. Take care.
Patty
Always remember to forget the troubles that pass your way. But never forget to remember the blessings that come each day.