Just a reminder...
TNA's 6th National Conference will be held
September 14-16, 2006 in Portland, Oregon.
Registration rates go up after June 6.
For conference details and to register
online, go to
www.endthepain.org.
I hope to see you in Portland!
Jane Boles
TNA Executive Director/CEO
Please send your letters via email to
newsletter@tnac.org or mail to
Patty, TNAC editor, Box 973, Coaldale, AB, T1M 1M8
Dr. Anthony Kaufmann, Medical Advisor
to the TNAC has agreed to answer your questions. If you have a question for
Dr. Kaufmann, please send it to the newsletter at
newsletter@tnac.org
by e-mail, or snail mail to Patty at Box 973, Coaldale, AB, T1M 1M8.
Question from Member:
My trigeminal nerve was damaged by radiation when my left eye's lacrimal
gland was biopsied and found to have lymphoma. The whole general orbit area
was radiated. This radiation left me with chronic agonizing pain for eight
months now. I have been researching my pain and having weekly trigeminal
nerve blocks done, although they last only a week at best if they work at
all. What are the chances of a trigeminal nerve ablation permanently ending
this pain?
Response:
Pain related to nerve injury is very complex and requires a thorough medical
history and physical examination to diagnose the type of nerve injury pain.
In this case, however, there are several other possible causes of the eye
pain, highlighting the need to have a carefully established diagnosis.
Radiation to the eye can lead to damage and irritation to any of the
associated structures. In some cases, surgical removal of the damaged tissue
(e.g. eyeball) may be necessary. This of course, requires a careful
assessment by appropriate specialists (i.e. ophthalmologist). If it is
ultimately determined that the pain is related to an injury to the
trigeminal nerve, medications for "neuropathic" pain include anticonvulsants
as used in typical trigeminal neuralgia. Under the direction of a pain
specialist, additional medications including opiates may be tried. In
general, surgical procedures to injure or "ablate" the trigeminal nerve may
provide a short-term pain relief but may be complicated by actual worsening
of the pain including the development of a "painful numbness" (e.g.
anesthesia dolorosa). Therefore, nerve injury procedures are rarely used
for the treatment of pain that has been caused by a nerve injury in the
first place. In this patient's case however, it should again be emphasized
the source of the pain may not be an injury or irritation to the trigeminal
nerve system but rather damage to structures in and around the eye, and a
specialist's attention to this is required.
Anthony M. Kaufmann, MD, MSc, BSc (Med)
FRCSC
Associate Professor, University of Manitoba
(Neurosurgery)
Director, Centre for Cranial Nerve Disorders
Co-Director, Centre for Cerebrovascular
Disease
Co-Director, Winnipeg Centre for Gamma Knife
Surgery
http://www.umanitoba.ca/cranial_nerves
The Striking Back Books have arrived.
The cost is $ 40.00 (postage included). If you would like to purchase a
book, please send a cheque or money order to: TNAC, 1514 Lakemount Blvd.,
Lethbridge, AB T1K 3K4 and your book will be mailed upon receipt of
payment. Please mark “Striking Back Book” on memo line.
To our Quebec members,
the transcripts of our TNAC News will be late in coming as Stephane Bourque,
our translator, has been very busy with his work, selling his home,
and scheduling a bike trip with his wife from Vancouver to Quebec. Stephane
is on a mission to promote AQNT on this tour and we wish him every success.
His itinerary is not as yet complete, but the latest info received is that
he will be arriving in Vancouver late on July 5th , take a few
days off to visit Vancouver and leave Monday morning July 10th to
begin the bike trip. Should I receive notification that he will be where we
have a Support Group, I will let your S.G. Leader know. Please see
Stephane’s notice in this issue.
Our General Meeting is on August 12,
2006 at the Lethbridge Senior Centre, 500 11th Street, S.
Lethbridge, AB. Please phone 403-327-7668 for further information if
required or email
mguzik@telus.net. Hope to see
you there.
I hope you all have a wonderful and
pain free summer.
Marion.
New
Members:
Bruce Smillie – Surrey, BC
Edgar Campbell - Surrey, BC
John Nixon- Winfield, BC
Catherine Albright – Pincourt, QU
Donations:
Bruce Smillie – Surrey, BC
Ethel & Edgar Campbell – Surrey, BC
Lois Henry – Winnipeg, MB
Johanna Hensen-Ingersoll, ON
Olga Ferrer - Red Deer, AB
Donations For The Calgary Group:
Ann Kennedy – Calgary, AB
Donations for the Toronto Support Group
Juanita Ruse – Toronto, ON
Lethbridge,
Alberta
The next meeting will be on 2
pm Saturday, June 10, 2006 at the Lethbridge Senior Centre, 500 – 11th
Street, South, Lethbridge.
Contact Marion Guzik at
403-327-7668 or
lethbridge@tnac.org
Calgary, Alberta
The Calgary TN Support
Group meets the last Saturday of each month. The next meeting will be
June 24, 2006 at 2 pm. Meetings are in the Community Room of the
MacLeod Trail Co-Op, 8818 MacLeod Trail South. Everyone is welcome. This
will be the last meeting before the summer break – unless I hear from people
wanting an August meeting – please let me know.
We have arranged for an
Acupuncturist to speak to us at the September 30th meeting.
She is Melonie Jensen, a graduate of the Academy of Classical Oriental
Sciences’ 4 year Doctor of Traditional Chinese Medicine
program. Melonie has been practicing Traditional Chinese Medicine (TCM) for
5 years. You can check out her web site at www.terrasana.ca.
On May 27, 2007 we were
joined by a Reiki Master who explained how this process can help people with
TN. She demonstrated a Reiki session and the “patient” explained how she
felt and how the treatments helped her as she was preparing for her MVD.
Others in the group have tried Reiki in the past and believe the process
helped with relaxation, and being able to cope with the pain of TN.
Our garage sale was on
June 3rd. A big thank you to everyone who donated items. We
had a fantastic collection of items. We raised $241.80. All proceeds will
go to the Calgary Group. Special thanks to Gaye and Bob Mackie for the use
of their home and a big special thank you to Gaye and Bob Mackie and
to Lois Knutson for their help in setting up for the sale. We carried boxes
and boxes of goodies to that front yard!! I also want to thank Gaye, Lois
and Deb Schneider for their help in cleaning up the after the sale. And
finally thanks to Ron Russell, Mark Piche and Ann Kennedy who joined us on
Saturday to help with the sale. It was a team effort. Everything that was
left over at the end of the day has been donated to charity.
The TNAC – Calgary Group
walked in the MS Society Walkathon. Our team raised $690 for the MS
society and had lots of fun on our walk. There were 6 walkers from our
group.
For information on the
Calgary group, please contact Jan Williams (403) 295-0987 or e-mail
Calgary@tnac.org
Toronto, Ontario
Toronto/and surrounding area Chapter: Next
Meeting June 25/06, 9:30 a.m.
Thornhill Community centre
7755 Bayview Ave. Thornhill
You do not have to be a member of the
TNAC to attend meetings. Bring a support person with you. All are welcome.
Sandra and Kathy look forward to seeing you.
The Toronto/and surrounding area
Chapter will be having a garage sale sometime in July or August. If you
plan to attend a meeting and have any treasures you would like donate we
would greatly appreciate it.
Kathy Somers
kathleen_somers248@hotmail.com
Group Leader
Trigeminal Neuralgia Assoc. Canada
Toronto Chapter
"TOGETHER WE WILL END THE PAIN"
From
Vancouver
to Quebec on bike as the first fundraising activity for the Trigeminal
Neuralgia Association of Quebec
About 11 months after the creation of
the ‘Association Québécoise de la Névralgie du Trijumeau (AQNT)’, from July
10th to September 4th, our bike adventure from Vancouver to Quebec will be a
campaign of information about trigeminal neuralgia and a way to aware people
about the AQNT. This initiative is the first fundraising activity for the
AQNT. The donations received will be invested 100 % in the association and
will help us to reach our goals more quickly.
Here is a small sample of the goals
that the AQNT wants to accomplish:
* Inform the Canadian and Quebec population
about the presence of the AQNT.
*Help people with facial pain to recognize
the trigeminal neuralgia quicker and to meet with the appropriate
specialists to establish the right diagnosis in a reasonable time in order
to decrease the period of time of pain associated with this condition.
* Offer support to people with this
condition as well as for their close family and to direct them to the
appropriate resources in a timely manner.
* Create a voluntary support phone contact
list for each of the Quebec administrative region.
* Prepare information brochure about
trigeminal neuralgia and distribute them to the non-specialists, in order to
decrease the period of time to establish the right diagnostic on the people
with this trouble.
The AQNT in brief!
web site:
www.aqnt.org
e-mail :
sbourque@aqnt.org
Tel : 514.717.0416
For details about the fundraising
activity or to make a donation, please visit:
http://www.aqnt.org,
click on ‘Levée de fonds – traversée à vélo Vancouver – Québec’.
Thanks!
Permission to re-print this letter or any
portion of it was received by Thomas Richter, Nobleton, Ont. May 10, 2006.
I was a TN sufferer for almost 3 years (which I believe was triggered
by some lengthy dental work performed prior to my TN pain). The pain was
constant (sometimes totally unbearable), especially while eating and
speaking. I did occasionally get the very intense electrical type pain.
Needless to say, I went to see various (neurological) specialists, including
various types of acupuncture, massage, laser therapy, and chiropractic to
name a few. The pain continued and some relief came from the various
medications I was taking (carbamazepine and Trileptal combined). I needed
to increase the medication doses (to almost 4 times what was recommended by
my doctors), which made me increasingly tired. I also suffered from the
many side effects caused by the increase in medications (dizziness, double
vision, trouble walking etc.). At the end of the day, I was still in great
pain and the medicine was not working, so I opted for the Gamma Knife
surgery in Toronto (the Gamma Knife Centre is new at Toronto Western
Hospital since Feb. 2006). The Centre is possible through a 5 million
dollar donation made by the Tannenbaum family.
Since my Gamma Knife surgery (completed on Feb. 2006) I have noticed a
great improvement in my health. I am still taking 400 mg of Carbamazepine 2
twice daily (I was taking almost 3 times that before the surgery, including
at least 1200 mg of Trileptal each day). The good news is that I can now
eat and speak totally pain free (thank you God).
I would recommend this procedure to anyone suffering from TN. The
doctors and nurses at Toronto Western (Dr. Schwartz is the head of the TN
department) were caring and very compassionate which made the whole
experience that much easier.
Hopefully this letter will give someone some hope in dealing with this
very painful and misunderstood ailment.
Sincerely,
Thomas Richter
This month we received 8 more replies
to our survey, giving us 15 in total. Thank-you to all who have
participated. The questionnaire was in the April newsletter and we
encourage those who haven't filled one out yet to tell us your experiences.
Here are more of the results:
1. Cause of pain: TN (non-specified)
- 3, TN (classic) - 5, TN (atypical only) - 0, TN (combination of classic
& atypical) - 5, Post herpetic neuralgia - 1, MS - 1, Not sure - 1. One
respondent's pain was caused by classic & atypical TN accompanied by TMJ,
TMD & sinus rhinitis.
2. Number of years suffering with facial
pain: Ranged from 3 to 30 years. 8 out of 15 respondents have suffered
3 to 6 years, 7 have had 7-15 years of pain and the other 2 people who
responded have suffered with facial pain for 22 and 30 years.
3. Side of face affected: Right -
11 Left - 3, Both - 1
4. Medications tried: Tegretol 14
out of 15 who responded, Gabapentin- 13, other medications included;
Dilantin, amitriptyline, trileptil, topamax, baclofen, lamictal, morphine,
phenobarb, dilaudid, Lyrica & methadone.
5. Current meds: The good news is
that 7 are no longer on medications & one is in the process of weaning off
meds after a recent MVD.
6. Two requests came in for medication
info. Morphine and methadone will be featured in future newsletters.
7. Total surgeries/ procedures: (several
have had more than one)
MVD's--9 Gamma
Knife--2 Radiofrequency Lesioning/ Rhizotomy--3
Glycerol Injections—4
Balloon Compressions--2
--One person is waiting for MVD
surgery- date still unknown, this will be their first procedure.
--Four procedures were undergone for
someone who has had TN for 15 years.
8. Three to four years was the length of
time the majority of people had facial pain prior to choosing surgery or
having a procedure done. One respondent had pain for over 25 years prior to
having their first procedure done (glycerol inj.)
9. Reasons people stated that turned them
towards trying a procedure: "desperation", "could no longer eat or talk",
advice from family doctor, neurosurgeon or support group, and many were
unable to function with the huge doses of medications.
MVD
The most recent MVD was 5 weeks ago.
The earliest: one person had a MVD in 1991, who states it was successful to
rid of the excruciating pain but has been left with burning pain & numbness
(anesthesia dolorosa). Successfulness, 6 reported 'yes', 2 reported 'no'
and one was unsure. Out of the 6 who reported that the surgery was
successful, 4 are no longer on medications, one is weaning off the last of
the meds. from a recent surgery and the other person was pain free X 4 1/2
years (MVD in 1995) and is now back on medications. The unsuccessful MVD's
were due to pain free periods of 13 days, 6 months and 9 months. Seven
would recommend the surgery to others, 4 would repeat the procedure if
needed. Some answered 'no' due to age or a repeated surgery was not
recommended by the surgeon. Complications: 5 reported slight or no
complication, 4 have some degree of permanent numbness. The more recently
done surgeries appear to have less problems with complications, (taking into
account that this is a small study). One person who responded suffers from
anesthesia dolorosa since having surgery.
Gamma Knife
Two people responded to the survey who
had the procedure. Both were successful and recommend it to others. One of
the procedures was done this year and the other individual was pain free for
10 months following the procedure in 2003.
Glycerol Injections:
Four were reported. One person had the
procedure done twice and they were not successful (Balloon Compression was
successful for this individual). Two other procedures were successful.
Recuperation took 2 - 7 days. One respondent had the procedure in 2003 and
is on no current TN medications. Unfortunately, side effects did include
permanent numbness for 2 people.
Balloon Compression:
Two people had this procedure and both
stated that it was successful. No major side effects reported. One person
is pain free and no longer on medications. The second had a 4 month pain
free period & prior to the compression was on 15 pills a day but is now able
to have pain controlled with 2 pills per day.
Please if
you haven’t done so already; send in your Election Nomination forms. The
Election is coming up fast and we need the names as soon as possible. The
forms were included in a previous issue of the TN News and you may snail
mail them to:
TNAC; Election
Nominations
1514 Lakemount
Blvd. South
Lethbridge,
AB T1K 3K4
I
hope everyone is enjoying the monthly newsletters. I changed the formatting a
little on this issue and deleted the columns. I’ve been having some trouble with
the formatting due to the photos below and rather than not have the pictures
included, I just changed things a little on the way that the newsletter looks
this time. Hope you don’t mind! By the way, there will be no issue for July 1
but we will put together the next one for mid summer.
Shown below
are 2 photos. The first is of Dr. Kaufmann, Kathy Somers (white jacket) of the
Toronto TN Group, and Sandra Arangio, Group leaders for the Toronto Chapter
taken at the dinner held at “Frankie Tomatto’s”. The second photo is of some of
the members walking for the MS Walk for Cities group. I wanted to include these
photos in the last edition of the TN News but my computer and I weren’t seeing
eye to eye on a few matters!
And now, from
my huge book of Miscellaneous Ramblings, here are a couple more Points To
Ponder:
* Procrastination
is the art of keeping up with yesterday.
* The older you get
the better you realize you were.
Please send me
your comments, questions, stories, photos, etc. You may either snail mail to:
Editor, TN News, P.O. Box 973, Coaldale, AB, T1M 1M8 or email to
editor@tnac.org. Thanks everyone.
