Greetings to all! 

            2007 has been an exciting year for CaTNA.  We now have 68 members from across the country.  We are also delighted to announce the formation of a new group in Winnipeg.  Marion Hucul will form the group with the first meeting to be scheduled in January.  Watch for details on the web site.  That means we have a total of 7 support groups now.

            As always, if you would like to have a support group in your community please contact me and I’ll try to help you get it started.  A support group can be a small group that meets in someone’s home – or a larger group that has a combination of discussion meetings and guest speakers. 

Dr. Anthony Kaufmann spoke in Calgary in October.  His presentation was wonderful and it was great to meet so many new people. 

Our next seminar will be a presentation by Dr. Cory Toth, the co-director of the Neuropathic Pain Clinic here in Calgary. 

On behalf of the CaTNA team I wish you all a happy and pain free Holiday Season.

Jan

Dr. Anthony Kaufmann has agreed to act as the medical advisor to Canada TNA.  Dr. Kaufmann is an Associate Professor, University of Manitoba, and Section of Neurosurgery; the Director, Center for Cranial Nerve Disorders; Co-Director, Centre for Cerebrovascular Disease; Co-Director, Winnipeg Centre for Gamma Knife Surgery and the Supervisor, Intra-Operative Monitoring Program.

            He has had a special interest in Trigeminal Neuralgia since working with Dr. Peter Jannetta at the University of Pittsburgh.

The medical advisor to a group like CaTNA helps to ensure that whatever information we provide is accurate and appropriate.  He will also help design a Medical Advisory Board (MAB) so that we have medical representation from across Canada. 

One thing an MAB can help us with is identifying speakers who might come to one of our meetings. 

In the spring of 2000, at age 33 and in otherwise good health with a wife and two very young boys, I started to experience occasional lightning like bolts along the right side of my lower jaw.  After a few of these very infrequent but sudden “attacks” I believed the cause had to be dental and sought help that way.  Every dentist told me they couldn’t find anything wrong and several indicated that I was imagining the pain.  Several dental surgeons also believed that a root canal might help the problem, but in no way were confident about it.

            After several weeks of this going on I finally went to my GP and immediately he thought it was TN.  Tegretol was prescribed and the pain all but went away.  Diagnosis confirmed!  And, with a referral to a Neurologist, along with a CT and an MRI, we found the culprit; a small epidermoid cyst which was located 'immediately adjacent to' the base of the trigeminal nerve.

            An epidermoid cyst is basically a lump of skin cells which probably started forming in the fetal stage, when a skin cell broke off and found its way into the nourishing brain fluid.  Not having anywhere to go as this cell divided, it just grew and grew upon itself.  For 33 years this cyst grew, going unnoticed, until it started to press upon the trigeminal nerve.  It is believed that the chemical composition of the cyst, it's interaction with and the proximity to the nerve all combined to cause the trigeminal nerve to 'fire' unrepentantly. 

            All things considered I was lucky that the time between my first attack to the time of getting onto the medications to the time of finding the source of the pain was only a couple of months. I know from talking with many others that this isn’t always the case.  I guess that I was also lucky in that we found out it was the cyst that was causing the problem and there really was only one way to (hopefully) solve the problem and it was as “simple” as removing/reducing the cyst.  Or at least that’s what the confident, God-like, neurosurgeon that I chose said.  But both my neurologist and my GP agreed, and I trusted them so I wasn’t about to argue.  BTW: The surgeon that I finally chose was the second local neurosurgeon I saw as I wanted a second opinion with a decision of this nature and I didn’t get a really good feeling after seeing the first one.

            So, now the waiting game began.  I started taking the meds (which made me feel drowsy, dopey and ‘stupid’) to manage the pain until the pain gets too bad.  Every time the pain got worse, we upped the meds.  Initially I started on Tegretol and then added Neurontin.  Although several other meds were added along the way it didn’t seem like they helped.  At that time (2001 – 2002) there weren’t as many other meds to try.  Much later we also tried adding codeine but I don’t really think that helped much either. 

            For the most part I could handle and hide, any attack that lasted less than 5 minutes from my kids and clients.  My job and lifestyle allowed me to do that.  But it got to the point where I just wasn’t able to function normally any more.  I was so doped up and in pain that I couldn’t keep it a secret from my clients, family and friends any longer. 

            Then one morning I had my worst attack ever.  The attacks would last for 15 to 20 to 30 minutes at a time and each attack came right after the other not allowing me any time to recuperate for at least 2 hours.  I can’t even remember how many Tegretol, Neurontin and codeine I must have popped that morning but I’m sure that I clinically over dosed on at least the codeine.  During that attack was the only time I ever seriously considered suicide.  That afternoon when I could finally talk I called and made an appointment with my neurosurgeon and we set a date for the surgery.

            So just after two years from the pain starting, I was going into a Toronto hospital on a Wednesday morning for some brain surgery with a hot-shot neurosurgeon. 

The procedure was the same as for a MVD with them coming in on the right side of my head just behind the ear and making their way in towards the trigeminal nerve root.  My wife and I were told that the procedure would last about 2 hours.  In actual fact it took just over 4.  While they expected to remove a pea size amount of cyst, it tuned out that it was more the size of a grape which is why it took as long as it did.  (Due to the location and extremely adhesive nature of the cyst, it was not completely removed so that there would be minimal damage to the surrounding structures that it was attached to.)  Toward the end of the procedure the surgeon also moved a blood vessel that he found in the area, he put in some shredded Teflon to pad the trigeminal nerve from the blood vessel and also performed a MVD.  Hey, while he was in there, why not?

            The first thing I remember after going into the operating room and lying down on the table was waking up in ICU and throwing up everywhere, apparently a normal reaction to the anaesthetic.  The next thing I remember was the incredible pain in my neck every time I tried to move my head, apparently a normal reaction to the procedure.  Shortly after, the neurosurgeon came in, looked at me, and explained how the procedure went and what he had done.  He sounded happy with the results.  He also asked if I had experienced any TN pain since waking up and I hadn’t.  There was one particular movement of my jaw which lately seemed to trigger a TN attack instantly and he asked me to do it.  With incredible apprehension I did and nothing, no electrical jab in the jaw, no excruciating pain, nothing.  So I did it again, and still nothing!!!  I was so relieved.  Suddenly all the apprehension and the risk of the surgery seemed worth it.

            Two days later, with my neck still in an incredible amount of pain, I was being discharged from the hospital and went home to see my boys and my family.  Within a week I was back on my feet again, albeit at a very slow pace, and starting to get back to normal.  The incision along with the 15 staples looks a lot worse a week after the surgery than it does now as it’s under the hair line and hardly noticeable.

            One setback that I did have was that about a week after the surgery, I came down with mild headaches a mild fever that I just couldn’t shake.  After calling the neurosurgical ward at the hospital they recommended that I come in to emergency so that they could run some tests.  After an entire day in emergency and one non-invasive test after another they still couldn’t find the source of the infection which led to one final test … a Lumbar puncture to test the CFS (Cerebrospinal fluid).  OH MY GOD, what an absolutely painful procedure.  But it was done and it was late and it would take several hours to get the results so I was sent home. 

            Only hours later, the hospital called me and recommended that I check myself in ASAP as they wanted to put me on IV antibiotics.  The Infectious Disease Department was testing the CFS sample to see if there was an infection (which is called bacterial meningitis) which is apparently very serious.  After 5 days in the hospital the test results were negative, the fever and the headache had long since gone and I was completely bored out of my mind.  Thankfully they discharged me and I haven’t looked back since.

            Jump forward almost 5 ½  years and here I am.  I’m very happy to say that I’ve been TN pain free ever since the morning of my surgery.  I was taken completely off the Neurontin the day of the surgery and weaned off the Tegretol over a couple of weeks after the surgery and haven’t had to go back on any meds for this since.

            While I still have some minor discomfort which flares up in my face (along the same branch of the nerve) when I’m tired or stressed a bit, it’s only a very minor tingle and or sometimes feels like razor burn.  I’m told that it’s side effect of the trigeminal nerve being damaged by the cyst, the procedure of removing the cyst or the MVD and or all of the above.  Although mildly annoying at times, it serves as a reminder to be grateful for no longer having to suffer the TN pain.

            The cyst is not gone, and unless I undergo some very aggressive procedure it will never be completely gone.  It’s being monitored with semi-annual MRIs and I’m happy to say that so far, it hasn’t been an issue but I know that one day I will most likely have to go for another procedure to further remove more of it.  The way I see it though, and the way it was explained to me, is that the problem took almost 33 years to manifest itself the first time.  Hopefully I won’t have to worry about it for another 5 or 10 or 15 years.  By that time, who knows how far neurosurgical techniques and procedures will have come and perhaps the procedure may even be an out- patient one?  Who knows?   I’ve got my fingers (and toes) crossed.  I’ve already come past the 5 year mark and now I’m targeting for 10.

            Ever since my surgery I’ve become a part of a great local TN support group in the greater Toronto area.  Although I’m not as involved as I could be I’ve talked with numerous TN sufferers and their families through this group.  I’ve heard a lot of stories and one common thread that always seems to emerge is that everyone feels alone in their suffering, at least in the beginning.  It’s important to realize you are not alone and that there are others that understand what you are going through and are willing to help you get through this.

            One thing that I got lucky with was the knowledge and compassion of my GP, neurologist and neurosurgeon.  While I’ve heard some horror stories about many TN sufferers’ experiences with doctors, dentists and surgeons, I have to admit that I’m also hearing about more and more people who do get the right information and treatment early on to help manage and combat their suffering.  It’s comforting to see that the medical profession is becoming informed and educated on this condition and how to handle it.

            Within the last several years, there has been some great work done in major centres across the US and Canada like the University of Manitoba Centre for Cranial Nerve Disorders in Winnipeg.  These centres along with so many fabulous and compassionate support groups are now providing such good and accurate information that sufferers and their medical support professionals have so much more accurate information to work with than even just 5 years ago.

            When I started my journey I felt very scared, alone and at the mercy of this mysterious and horrible pain.  Through persistence and perseverance I was able to find the right people and information to put me on the path to recovery.  While I know we are able to find considerably more and more bad and sad stories out there about TN and its suffering, we shouldn’t give up hope as I’m here to testify to you that there are good outcomes as well.

            I wish you all good health.

                                    Paul, Ontario

Hi Jan:

I like to read or hear about people with TN who have had positive results from surgery or drugs. We all know that the pain is excruciating and don't need to hear anyone tell how awful they feel - we already know that. When I read of a positive result from surgery on TN on a Forum, for instance, I write a thank you e-mail to that person if there is an e-mail included, and on a Forum I post a thank you if no e-mail address is included in their posting. Each positive result is encouraging to all of us.

Shirley H.

Note:  Shirley is active on the message board if you want to talk to her:  www.catna.ca/talk

It will be two years ago in December I walked into my Doctor's office without an appointment due to a severe pain in my ear and shooting up into my head.  My thought was an ear infection as I had them quite frequently.  She said there was no sign of infection and sent me on my way.  In February the same thing happened and I went to see my Doctor again.  This time I was twitching my head from the pain, immediately she diagnosed me with TN.  I went to a neurologist and he confirmed her diagnosis.  I was then prescribed Tegretol - 800 mg. daily. 

I was working at the time, but finding it difficult to remember and comprehend.  I took some time off only to return to work feeling very insecure of my knowledge to continue my high profile job.  I left my job to stay at home.  I also went for therapy trying to accept the fact I could no longer do the job I loved to do.  I had good days (no pain) and other days, without warning, it attacked with a vengeance, the worst pain I have ever experienced.  I was on the medication for one and a half years.  Due to liver complications I had to gradually stop the Tegretol.  That was one month ago. 

I understand TN can go into remission.  That must be where I'm at right now.  I think about it every day and pray to God that horrible experience never reoccurs. My TN may be unlike others. I occasionally felt the pain in my cheek and down to my chin, but most often my pain was shooting up from my ear to the top of my head, and it would occur on either one side of my head or the other. It didn't have a preference.   

I am not a story writer, but I really felt the need to share my experience, so others could learn from my exposure with TN.   

                                                Marie, Ontario

The following are part of the course notes prepared by Dr. Kaufman and reprinted with permission on the Surgical Management of Trigeminal Neuralgia.  These notes were used for a course presented at the Canadian Congress of Neurological Sciences (CCNS), June 2006.  The complete notes are available at http://www.umanitoba.ca/cranial_nerves/ccndhome.htm.   Reprinted with permission

Surgical Management of Trigeminal Neuralgia

The neurosurgical management of trigeminal neuralgia must incorporate a strong working knowledge of the disease diagnosis and course, effective use of medications and all available surgical procedures. What follows is the general framework we consider in approaching patients referred for neurosurgical treatment of trigeminal neuralgia at our centre.

Clinical History

The clinical features of trigeminal neuralgia have been well defined, and details should be determined for each patient. Approximately half of the patients will have a distinctly memorable onset of trigeminal neuralgia, vividly recalling their first attack. One third will have experienced preceding “prodrome” symptoms of tingling or aching in the affected area weeks or months before. The patient should also be questioned about the nature of their original pain, including its distribution, character, duration, initiating triggers and associated symptoms during or between pain attacks (eg. numbness, tingling, aching, and ear pain). The subsequent disease course progresses with exacerbations that increase in severity, frequency and duration, while remissions become less frequent and shorter. It should be established whether the trigeminal neuralgia attacks have changed over time, with the development of advanced, atypical or clustered attacks. A complete history of treatment interventions and effects should be determined. Included with these, details of original diagnosis may reveal delays or errors as warned against in the original descriptions of the disease over 200 years ago. Still today, at least half of all patients we see with a clear diagnosis of trigeminal neuralgia had been subjected to earlier diagnostic errors and misguided, ineffective treatments ranging from dental extractions and root canals to tongue biopsies and psychiatric hospital admission.

The diagnosis of trigeminal neuralgia is confirmed by the clinical history and the absence of other neurological or craniofacial disorders. Diagnostic imaging is not necessary for diagnosis and we do not rely on this to identify the causative neurovascular compression. However, 1 to 4% of trigeminal neuralgia patients will have relevant co-pathology such as benign tumors. MRI is mandatory whenever there are findings of neurological deficits such as facial numbness or question of related multiple sclerosis.

Management Strategies

Treatment of trigeminal neuralgia over the last 3 centuries has included an assortment of ineffective and bizarre interventions, such as hemlock, arsenic, tooth extractions, purging, bleeding, carotid ligation, abdominal steam, and others. The "success" ascribed to these remedies was likely due to spontaneous remissions, which are frequent in the early course of disease. References to the seizure-like nature of the trigeminal neuralgia led Bergouignan to prescribe the anticonvulsant phenytoin in 1942, which became the first effective medical treatment for trigeminal neuralgia. This was followed by the breakthrough introduction of carbamazepine by Blom in 1962. Over 80% of patients initially respond to medical treatment, although between 10% and 20% develop early intolerance to these drugs. Among those maintaining long-term treatment, at least one third experience serious dose-related side effects.

Trigeminal neuralgia pain becomes refractory to any combination of medical treatments in over 50% of patients, and neurosurgical interventions are required. In general, the four most common rhizotomy procedures (glycerol, balloon-compression radiofrequency and radiosurgery) offer similar results. Long-term control is achieved in approximately 50%, but may be associated with sensory loss, and risk of deafferentation complications such as paresthesias, dysesthesias, or anesthesia dolorosa. Alternatively, microvascular decompression surgery offers a greater potential to cure trigeminal neuralgia while maintaining normal nerve function, although it entails a more invasive procedure. If trigeminal neuralgia recurs after initially successful surgical intervention of any kind, medical treatment may prove more effective than preoperatively. However, some patients do undergo multiple procedures for the treatment of tic, and rare cases become refractory to any standard medical and surgical interventions.

The timing of interventions is tailored to each patient based on their own disease experience and comparative assessment of treatment options. Physicians must not underestimate the intensity of trigeminal neuralgia pain, widely described as the most painful of conditions, nor disregard a “pain free” patient’s fear of the inevitable next exacerbation. Even patients newly presenting with medically controllable trigeminal neuralgia should be introduced to all the treatment options and the potential for severe and sudden future exacerbations. Furthermore, patients with trigeminal neuralgia should have a “game plan” regarding treatment for future attacks, including emergency medical and/or surgical treatments.

Medical Management

The first line of treatment are anti-convulsants such as carbamazepine or gabapentin, in a slowly escalating dose. Pain relief can usually be achieved early in the disease course. The lowest effective drug dose is then maintained until the patient is completely pain free for at least two weeks, and then a trial of gradual dose reduction and discontinuation. Advanced trigeminal neuralgia cases will require higher drug doses and many patients experience dose-related side effects of fatigue, concentration and memory decline and balance incoordination. Other anti-convulsants may be tried, including phenytoin, Oxycarbazepine and pregabalin. Medical treatment of severe trigeminal neuralgia often requires a combination of two or more medications, including the synergistically acting baclofen.

Many patients however will strongly consider the option of surgery rather than embark on lifelong polypharmacotherapy. It must be appreciated that over 50% of trigeminal neuralgia sufferers will eventually require a surgical procedure, when their medical treatment fails to provide adequate pain relief or causes intolerable dose-related drug side effects. We consider the surgical options for any patient unsatisfied with their medical treatment for reasons of continuing pain, drug side effects or aversion to ongoing medication use. A point of caution however, is the need to prescribe these medications carefully. Starting at a low dose and gradually increasing allows for enhanced drug metabolism and reduced side effects, improving the chances a patient will reach an effective dose before giving up on the drug.

(To be continued in the next newsletter)

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. 

Alberta

Calgary: 

The Calgary Support group meets once a month at the Real Canadian Superstore Community Room in Deerfoot Meadows.  Contact Jan for information 295-0987 or calgary@catna.ca.  The next meetings will be:

Saturday, Dec 8, 2 pm

            Coombs lecture Theatre

            Foothills Hospital

            Guest Speaker:  Dr. Cory Toth

Thursday, Jan 17/08,  1:30 pm

Video:  “Selecting a Surgery” by Dr. Kenneth F Casey.  (Dr. Casey is the co-author of the Striking Back Book)

Manitoba

Winnipeg;

The new Winnipeg group will begin meetings in January, 2008.  Date and location to be announced later.  Contact Marion at  (204) 697-9459 or Winnipeg@catna.ca

Ontario

Thornhill

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

Jan 27, 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 and dates.

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 . The next meeting will be:

Saturday, Jan. 19, 10 a.m. at Wascana Rehabilitation Centre, in the Boardroom

Video:  “Selecting a Surgery” by Dr. Kenneth F Casey.  (Dr. Casey is the co-author of the Striking Back Book)

• Home • Trigeminal Neuralgia • Newsletters • CaTNA Contacts • Groups • Message Board • Internet Sites • Resources •

All information provided on this website is for educational purposes only and should not be used as a substitute for qualified medical advice.     CaTNA webmaster
Last modified: 03/31/09.