August 2007

 

 

Canada TNA

 

Canada TNA (CaTNA) is a network of support groups and individuals who are dedicated towards sharing information and support to people who have Trigeminal Neuralgia and other facial pain.   Membership in CaTNA is $10 per year.  Newsletters are available free by e-mail, and for $6 per year by Canada Post.   Contact:  Canada TNA, c/o Jan Williams; 15 Everstone Dr. SW, Suite 207; Calgary, AB, T2Y 5B5.  email: calgary@catna.ca;  Phone:  Phone: (403) 295-0987.  Canada TNA is associated with the TNA Association in the USA.

 

 

Greetings to all!

I hope this newsletter finds you all pain free and enjoying the summer. 

            In this newsletter we have stories from two members – we’d love to hear from you about your journey with TN and facial pain.  Please contact me if you are willing to share your story.  We are always happy to hear from you.

            CaTNA is less than one year old and already we’ve had support group meetings in six locations.  If you think there may be a small group in your area who would benefit from meeting together, contact us and we’ll be happy to help you get organized. 

Remember to check out our web site:  www.catna.ca                               Jan

 

 

Everyone is welcome to attend a support group meeting.  You do not need to be a member of CaTNA although we will be happy to have you join us.  Our doors are open to TNAC members, TNA members and those who have not joined any organization. 

 

 

Alberta

Calgary:  The Calgary Support group meets once a month at the  Real Canadian Superstore Community Room;  #100- 20 Heritage Meadows Way SE.    Contact Jan for directions 295-0987 or calgary@catna.ca .  The next meetings will be:

Saturday, Aug 18, 2 pm

Thursday, Sept 13, 2 pm

 

In October we will have two major seminars:  One by Dr. Chris Toth from the Neuropathic Pain Clinic at the University of Calgary (October 13) and the second by Dr. Anthony Kaufmann, Center for Cranial Nerve Disorders, University of Manitoba (October 27).  Details on location and times will be provided later.

 

Ontario

Thornhill

The group meets the last Sunday of each month at  the Thornhill Community Centre, 7755 Bayview Ave

Aug 26, 9:30 am

Sept 30,9:30 am

Contact Kathy (905) 853-9849 or Sandra (905)284-9215 or by e-mail Toronto@catna.ca

 

West Toronto

Contact Valerie at (416) 588-4951 or westto@catna.ca for dates and locations

 

Newmarket

Contact  Kathy (905) 853-9849 or Sandra (905)284-9215  or email Toronto@catna.ca for locations.

Tues, Aug 7, 7 pm

Tues, Sept 4, 7 pm

 

Saskatchewan

Saskatoon

Contact Dee at (306) 382-5666 or by e-mail at saskatoon@catna.ca for dates and locations.

 

Regina

Contact Faye (306) 751-0761 or by e-mail at regina@catna.ca  for dates and locations.

 

 

Dee Germs is the Support Group Leader in Saskatoon

 

I am pleasantly surprised about how many calls and people that have turned out.  I have high hopes for the months to come that our numbers will grow and we can support one another through this.  We hope to make a strong support system for the Saskatoon Area and be a resource of information through our collected experiences.  We are always open for newcomers and/or just phone calls if that is all people can do - I have already met and interacted with more people than I ever thought I would who also suffer from TN and I am finding the experience to be challenging and rewarding and look forward to a long relationship with all my fellow support group members.

 

 

            My journey began 7 years ago with TN and I am still battling this affliction today.

 

            It all started when I felt a small but curious “spark” on my right cheek after I had washed my face in the bathroom. I did not think much of it and continued as if nothing happened. With time the sparks seem to happen more frequently and with a slightly higher intensity. At that point I still did not categorize it as anything that was particularly painful or worrisome. I mentioned it to my dentist who did the usual examination, X-Rays and thorough check-up. He said that there was nothing in the examination that would explain the sparks and that he would discuss it with his colleagues in his field. Several months later, he contacted me and told me that it was possible that I had an affliction called Neuralgia and that I should try medication called Tegretol to see if the sparks would diminish. I did try the medication briefly but found that the side effects were not worth the bother. A few months later I had a jolt in the face after washing my face that was painful enough to raise a red flag in my life. This was still not enough to push me to go see a Neurologist so I tried to avoid irritating the nerve and was very careful when I would shave or wash.

            The watershed day came when I was playing with my daughter one morning and was blowing bubbles on her stomach as all parents do when they are playing with their kids. The jolt that followed lasted about 8-10 seconds and was the most painful thing I had ever experienced in my life. It felt like someone had stuck a live electric wire in my mouth and had opened the current to a thousand volts. I screamed to the top of my lungs and curled into a fetal position on my bed. This was followed by 2 similar jolts that evening that also caused an intense toothache in my mouth that lasted over an hour. Being the stubborn person that I am, I still did not do anything until it happened to me at work one day, that was the final straw and I went immediately to a local clinic where the doctor diagnosed me with TN. He prescribed Neurontin which seemed to diminish the pain by 60-70% and which prevented the agonizing tooth-ache situation which almost paralyzed me the time before.  He referred me to a Neurologist who also made me take an MRI and other tests. All came back normal which I understand is not out of the ordinary for people with TN.

            I have since missed work on 7 or 8 occasions over the last 6 years, each lasting between 2 and 6 weeks. I still treat the seizures with Gabapentin which is a generic version of Neurontin. It does not give me any side effects and seems to do a reasonable job. There are times when the meds do not do much so I try to increase the dosage as much as I can to relieve the pain. I am currently taking 600 mg per day when I don’t have pain and increase this to 3500mg each time I have a major episode. I frequently go several months without any sparks or jolts and seem to be managing the affliction quite well for the moment. I do notice that a cold or frequent blowing of the nose is the trigger for an episode of TN so I try to be as careful as possible with my allergies and when I get a cold. The worst part of having TN is that whenever I have an episode that I cannot talk or eat very much without triggering painful shocks in my mouth. I would say that I average 200+ shocks per day each time that I have an attack.

            I am hopeful that I can continue to treat the TN with the medication and that I will not require surgery in the future.

            Peter, Quebec

 

 

We asked the question on the message board:  How does having TN affect your holiday plans?  Are you better because the weather is warmer?  Are you worse because you are outside in the wind more often?  Does temperature actually have an effect?

 

A1:  I love the summer so much more mainly because of the heat.  Breezes are less painful when they are warm.  But, I hate, despise air conditioning in cars, homes and especially stores.  I also hate the freezer aisles in grocery stores.  I have to select my favourite stores by their temperature now.  I have a beautiful convertible that I have head scarf with a folded face cloth folded inside to make a wind shield for my face.  I haven't tried to go swimming yet but I am sure the cool water will be an issue.  I certainly do prefer the summer and being in Canada I am wondering if it's worthwhile to pull up my roots and relocate to warmer climes.

 

A2:  I have to say i have been basically pain free since the middle of May. It is so unusual for me. My past experience is I'm worse in humid weather. When I get in a vehicle that's been closed up or the sun beats on my face, I'm usually in terrible pain. Even the heat from the oven and the burner on the stove will set it off. I've had some pretty bad summers. So i don't know what the change is this year – but I love it.   Kathy Somers

 

 

Hi, Jan. Yes. ALL went very well in Winnipeg! On my final day in hospital, when Dr. Kaufmann came to see me, as he did everyday that I was there, he volunteered to come to Regina to speak to our newly formed TN SUPPORT GROUP. I have shared that info with Faye and also the MS Society in Regina, as well as a Dr. with a strong interest in both MS and TN.

As for my story, it all arose from a root canal in January 2000. The pain continued until finally in April 2000, the Dentist sent me to a Dental Surgeon. He passed me on to a neurologist. That appointment was 3 months away, so I called my MS Neurologist and saw him inside of a week! Diagnosis..... Trigeminal Neuralgia.  

Well, now that we have a name for it, what can we do? I started on Tegretol and then added Baclofen. It helped for a while. Things worsened.

My GP set me up with a NEURO-SURGEON in Regina. The neuro-surgeon performed a Radio frequency Rhizotomy in August 2002. Relief at last, but only temporary. This very PAINFUL procedure lasted 11 months. Then the pain was back, but manageable with the medications.

Then I learned about Dr. Kaufmann from my sister. A client of hers, she is a hairdresser, had taken her husband to Dr. Kaufmann and reported back the wonderful results. Things were becoming more difficult so my wife contacted DR. Kaufmann's office to inquire about what, if anything, could they do. Dr.Kaufmann's suggestion was GAMMA KNIFE. As I have MS (since 1992) TN is not necessarily caused by the same thing.  I had some discussions with SaskHealth as they were reluctant to cover the costs of the Gamma Knife treatment. That was finally settled  in August 2005,

I was off to Winnipeg for GAMMA-KNIFE SURGERY. Unfortunately the Gamma Knife treatment was not effective. 

I went back to Winnipeg and September 27 or 28 of 2005 Dr. Kaufmann performed a Balloon Compression Rhizotomy. Didn't work! Because of all of the scar tissue around the ganglion from my previous surgery, the balloon needed to be inflated for a longer time period. I spent the Sunday night in the ER at the Health Science Center and saw Dr. Kaufmann on Monday morning. He re-did the surgery on October 3 or 4 of 2005. Pain Free at last.

When I reduced the medication, the pain returned so Dr. Kaufmann did another Balloon Rhizotomy March 15, 2006. That worked.  Now I can enjoy Vegas and a well deserved vacation for my loving wife!

Our grandson arrived on August 15,2006 and I started Hemifacial Spasms soon thereafter. Dr. Kaufmann's office suggests that I see a neurologist as there are other treatments available (botox injections) for the spasms. Done, and I received Botox on March 8, 2007. Relief for HFS, but now the TN is back with a vengeance.

Dr. Kaufmann suggests surgery for either an MVD or to "snip" two-thirds of the nerve if there is no blood vessel conflicting with the nerve. When Dr. Kaufmann learned that I also suffered HFS, he offered to do a MVD for that at the same time.

Tuesday, May 22, 2007 at 0730 I began my journey and five hours later to recovery, a couple of hours there and then to the neurological step-down unit. To date I am PAIN FREE!! Thank-you Dr. Kaufmann and staff. HOW SWEET IT IS TO BE PAIN FREE!!  Brian McFarlane, Regina.

 

 

 

In May of this year, Dr. Kaufmann joined the Toronto group for a night out.  He spoke about TN and the Gamma Knife.  The following is a list of questions asked and Dr. K’s answers.

 

Q.  Is there a problem of intracranial swelling after Gamma Knife? Is this a common problem?

There is no problem of intracranial swelling after Gamma Knife. This is not something that usually happens.

 

Q What about long-term effects of the radiation with Gamma knife? Does it increase the probability of tumors later in life?

A British study has shown that there is little radiation with Gamma knife and therefore, there is no problem with cancer, or tumors being caused by this procedure.

 

Q. How long will it be before you know if Gamma knife worked?

You should know in 3 wks. 3 months before you might have any side effects or ½ yrs to 1 yr.

 

Q. If you have Gamma knife and then have and MRI, will the MRI show that the Gamma Knife has worked.

Yes

 

Q. If your first Gamma Knife surgery doesn’t work, how soon can you have a 2^nd one?

If it doesn’t work in 3 months then it isn’t going to work for you. If the 1^st one works and lasts 2 yrs. You can have a second one.

 

Q. How long should you wait before coming off medication,(s) after Gamma Knife?

Start off slowly when coming off any medication and decrease slowly until you feel comfortable with the pain, with less medication. If you have no pain within the 2 wks. You can cut it down more.

 

Q. Can you have an MVD if Gamma knife doesn’t work?

Yes you can.

 

Q. Does the age of patient determine Gamma knife surgery versus MVD?

It is more of a health issue that would determine Gamma knife over MVD. If your health is poor then it might be safer to have Gamma knife rather than and MVD.

 

Q. What is the success rate of MVD surgeries for A-typical patients?

If you’re a-typical there is a 75% success rate with MVD surgery. (This could because there is some damage to the nerve, or your pain could be caused by something else. If not a-typical 90 % success rate.

 

Q. Is there any new research being done on TN in Canada or mostly the US?

Mostly the US

 

Q. Any new successful surgeries for TN?

Dr.  Kaufmann mentioned that in the future they are looking at Motor Cortex surgery for some kinds of pain, and to see if it will work for TN. Right now there are no new medications developed that can be used for TN but in the future there are some possibilities…

 

Q .Any new medications for TN?

Lyrica was mentioned, as side effects can be less. Once again this depends on the patient. As we all know with different medications you can have different side effects. (Trial and error)

 

Q. Success rate of Gamma knife?

Study showed that half of Gamma knife patients (around 40) had successful surgeries. Half failed 6 had MVD as 2^nd surgery.