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Gamma Knife at the University of Sherbrooke

The following information was provided by Dr. Brendan Kenny, Director Department of Neurosurgery at the University of Sherbrooke.

We recently analyzed the results of patients treated at the Quebec Gamma Knife at Sherbrooke for classical trigeminal neuralgia.

We included the first 50 patients who had completed at least 6 months follow-up (mean 8 months follow-up). All were patients suffering from typical trigeminal neuralgia with an optimal pharmacological treatment without sufficient pain relief or with significant side effects. We excluded patients who had post-herpetic neuralgia or deafferentiation syndrome or patients suffering from a multiple sclerosis.

The treatment consisted of the application of a stereotactic frame under local anesthesia followed by MRI scan (CT-scan for patients who had contra-indications such as pacemakers.). All patients were treated with a dose of 80 Gy to the trigeminal nerve. Patients were asked to fill in a pain questionnaire before and after the treatment and all patients were followed up directly or by telephone. We also measured the impact of the treatment on the quality of life.

Fifty (50) patients have been treated who were followed for more than 6 months with a mean age of 67 years (50-86); 60% were male, 40% female. Half of the patients were taking Tegretol and 46% Neurontin. More than a third of patients reported side effects of the medication at the term of treatment. Duration of pain before treatment was 12 ± 8 years and 40% had had previous surgery.

Average treatment time in the Gamma Knife was approximately 35 minutes.

There were no immediate side effects of the treatment; 40% of patients were pain free with no medication and 26% pain free with a reduction of medication at 6 months after the treatment. A further 18% reported improvement which was less significant; 10% of patients reported side effects in the form of numbness or pins and needles on

Overall 50% of patients reported an excellent result and 20% a good result after the treatment and 90% of patients said that they would undergo the treatment again.

There was no significant difference demonstrated between the sexes, between the side concerned and between patients who had had previous surgery or not. There was a statistically significant improvement in the quality of life after treatment.

Our reports demonstrate therefore that a Gamma Knife radiosurgery is a safe and effective treatment for the majority of patients suffering from classical trigeminal neuralgia – this is true also for very elderly or medically unfit patients. Our results are similar to those published in the literature from Pittsburgh and the Mayo Clinic.

There is a very positive impact on the quality of life for the majority of patients and those who suffer side effects reported them to be relatively minor.

Nous avons récemment évalué les résultats du traitement au Gamma Knife du Québec à Sherbrooke pour la névralgie du trijumeau.

Pour cette étude, nous avons inclus seulement des patients qui ont été suivis durant une période d'au moins 6 mois, soit des patients de n'importe quel âge, ayant eu un traitement pharmacologique optimal et qui présentaient une douleur névralgique du trijumeau. Également, nous avons exclu des patients ayant des symptômes suggestifs d'un syndrome post-herpétique ou avec la sclérose en plaques. Tous les patients ont été suivis durant au moins 6 mois, avec une moyenne de suivi de 8 mois. Plusieurs de ces patients ont déjà eu recours à d'autres traitements, comme la chirurgie décompressive ou la glycérolyse.

Tous les patients ont été traités avec le Gamma Knife à Sherbrooke, un traitement qui se déroule sur une demi-journée sous anesthésie locale, sans aucune hospitalisation. Après la pose du cadre stéréotaxique, une résonance magnétique est pratiquée pour cibler le nerf trijumeau en question; pour les patients porteurs de pacemaker ou autres contre-indications pour la résonance magnétique, un CT-scan a été effectué avec injection d'Iode par ponction lombaire. Par la suite, les patients ont tous reçu une dose standard de 80 Gy sur le nerf trijumeau du côté concerné. À la fin du traitement qui durait en moyenne 35 minutes le cadre stéréotaxique est retiré et les patients retournent à domicile.

Les patients ont tous complété un questionnaire sur la sévérité, la fréquence et la durée de la douleur avant et après le traitement. Les patients ont été suivis avec un questionnaire à l'appui, soit directement à la clinique ou par téléphone, et un autre questionnaire a été complété sur la qualité de vie des patients. Le résultat de cette étude a révélé qu'il n'y avait aucune complication directe du traitement au Gamma Knife.

Cinquante (50) patients ont été suivis sur une période de 6 mois ou plus, avec une moyenne de 8 mois de suivi. L'âge moyen était de 67 ans (50-86 ans) . Il y avait 60% d'hommes et 40% de femmes; 56% des patients prenaient du Tégrétol et 46% du Neurontin. Plus du tiers des patients présentaient des effets secondaires aux médicaments qu'ils prenaient. Les individus souffraient de douleur depuis 12 ans, ± 8 ans, et 40% avaient subi une chirurgie crânienne.

Ainsi, en terme de résultats, 10% des patients ont rapporté des effets secondaires au traitement par Gamma Knife, soit des picotements du visage pour la majorité et qui ne les dérangeaient aucunement; 40% étaient sans douleur avec cessation totale des médicaments et 26% étaient sans douleur avec réduction des médicaments. Ceci donnait un résultat global de 66% de patients complètement soulagés ou beaucoup mieux avec un autre 18% un peu mieux. La majorité des patients a été soulagée en dedans de 2- 4 mois suite à la procédure, certains ont été soulagés immédiatement et d'autres patients ont vu une amélioration après 6 mois environ. Les patients ont évalué le résultat comme étant excellent dans 50% des cas et comme étant bon dans 20% des cas. Il y a 90% des cas qui subiraient le même traitement une seconde fois en sachant le résultat actuel.

Nous avons composé une échelle de la qualité de vie avant et après le traitement qui a démontré une augmentation statistiquement significative dans la qualité de vie des patients traités.

Nous n`avons démontré aucune relation statistique entre le sexe, la localisation, le volume irradié et le fait que le patient a déjà subi une chirurgie ou non.

Donc, grossièrement, nous pouvons constater que 66% des patients considèrent le résultat excellent et 18% des patients du groupe traité ont eu une amélioration. Lorsque nous comparons ces résultats avec ceux publiés dans la littérature, nous pouvons remarquer que nos résultats sont similaires aux autres séries publiées, soit celles de Pittsburgh ou de la Clinique Mayo.

En conclusion, la série démontre que le Gamma Knife est un outil efficace et sécuritaire dans le traitement des névralgies du trijumeau et a un impact positif sur la qualité de vie de la majorité des patients traités surtout des personnes agées, avec des effets secondaires peu nombreux et faibles pour la plupart.

Neurosurgeon, Dr. Chris Honey generously gave up part of his Saturday to speak to the Vancouver & Lower Mainland TN Support Group. People with TN in the cities that make up the Greater Vancouver Regional District and beyond tend to converge on Dr. Honey’s office when surgery is the next step. Many of our members could not attend, so the following are highlights of his talk for all those who had to stay home that day.

Dr. Honey says Trigeminal Neuralgia is a very specific type of pain which he diagnoses by listening to the story. Among the things he looks for are:

TN often comes and goes over the years. It tends to get worse over the years with longer and more intense relapses and shorter and shorter remissions. This can confuse family Doctors as they often assume that the problem is solved so recurrences can lead them to think that the patient is making it up, but the reality is that TN is simply going in and out of remission

TN often responds to appropriate medication but over time the dosage may have to be increased as the condition worsens

§ Trigeminal neuropathy from damage to the nerve. Typically the pain is constant and although it can increase or be triggered, there is always a constant ache

§ Arthritis in the Temporomandibular joint (TMJ) can cause pain when you chew or talk.

Don’t come to the neurosurgeon first. TN should be managed by your family physician and neurologist with medication. You don’t need to see a surgeon until: The meds don’t work, or; you can control the pain with medication, but the side effects are so severe that you can no longer function

The two most successful meds are Carbamazepine (Tegretol) and Gabapentin (Neurontin), both are anti-seizure meds. Tegretol is best taken with food. Neurontin is better tolerated than Tegretol at higher doses and family doctors don’t always prescribe a high enough dose. Some patients take up to 1200 mg of Neurontin three times a day. Side effects include sleepiness and poor memory. Neurontin is OK for long-term use.

The trigeminal nerve is like a wire wrapped in insulation. Hundreds of these nerves are bundled together in a cable knows as the trigeminal nerve. If the insulation around part of this nerve is lost (either worn away by a blood vessels or attacked by the immune system in MS), the nerve can short-circuit and cause pain. Meds suppress the information being carried in this nerve and reduce the pain. Unfortunately, meds travel throughout the brain suppressing all sorts of brain functions if the dosage is high. This means that “walking, talking and memory” can be suppressed resulting in people feeling sleepy and wobbly and no longer their former selves. The light’s gone out.

The choice is between a Rhizotomy, which injures the nerve to block the pain by creating numbness, and a Microvascular Decompression (MVD) which is brain surgery to separate the nerve from the blood vessel that is compressing it.

Rhizotomies: There are many kinds of rhizotomy. Dr. Honey prefers the Radiofrequency Rhizotomy because it can best control the location and degree of numbness.

Radiofrequency Rhizotomy: The nerve is burned with a heated needle. The challenge for the surgeon is the balance between burning the nerve too much and creating unpleasant numbness, or not burning it enough so that there is less numbness but the nerve recovers and the pain can return, necessitating a repeat surgery.

Benefits are that the injury can be directed to a specific place on the nerve creating numbness where the nerve needs it; it is 90 per cent effective; it’s an outpatient procedure taking one hour and doesn’t require a general anesthetic.

People who have TN because they have MS are restricted to a Rhizotomy. The nerve sheath is being damaged by their own bodies and the MVD brain surgery option will not work for them.

Downside: one per cent can get anesthesia dolorosa (painful numbness); preferable not to do it for TN in the eye as numbness in the eye can lead to eye injuries because people can’t feel if they’ve got anything in their eye; it can create weakness in the jaw; the nerve can heal itself and the procedure will need to be repeated.

Gamma Knife: fires radiation at the nerve. Benefits are that it’s easy to adjust the dose and do minimal damage to the nerve, but there can be recurrence necessitating repeat surgeries.

Peripheral Rhizotomy: surgery of last resort and the nerve is cut close to the brain stem.

Removes the “pinch” on the nerve. There is usually a blood vessel beating on the nerve and over the years, the insulation has worn off. An MVD separates the two by inserting a piece of Teflon between them.

MVD is major surgery and not always recommended for those who are older or who have other health problems; it does not work for MS patients (TN can be the first symptom of MS)

It is recommended for people who are young and healthy who have a “pinched” nerve. Benefits are that it fixes the cause of the problem, there is no numbness and it’s 90 per cent effective. As the surgery is on the outside of the brain, it won’t affect “who you are.”

Risks include: three hours of brain surgery requiring a general anesthetic which means a one per cent risk of death or stroke; two days in hospital and a six week recovery period; 20 per cent have an allergic reaction to the Teflon padding and need to be treated with steroids until the inflammation settles down; there is a two per cent risk that the smile nerve and the hearing nerve can be damaged.

Post surgery: patients usually stay on their meds for a month; MVD can cause temporary nausea as surgery takes place close to the brain’s nausea centre; there can be some soreness in the neck depending on whether or not you’ve got a muscular neck so this tends to affect men more than women; no driving until you can check your “blind spot” comfortably; the ear may be plugged with water and it takes about a month for the fluid to drain away; and the head is wrapped in bandages for two weeks to make sure no fluid collects around the location of the MVD.

Dr. Honey also told us about a new MRI called a 3D FIESTA that has been developed recently. It has special thin cut sequences specific to diagnosing TN and evaluating the potential success of an MVD. It’s important to get this kind of MRI done and it’s not yet well known in the medical community. If your GP or neurologist is scheduling an MRI you might want to discuss this with them so that you get the right MRI done the first time.

Dr. Honey does about 30 MVDs a year and recommended that when talking to a neurosurgeon, it’s a good idea to ask them how many operations they do and what their level of expertise is.

Dr. Honey’s waitlist is six months to a year for an MVD. The benefit of Canada’s universal health care is that the surgery is free; the downside is that we have to wait.

Dr Chris Honey is Associate Professor of Neurosurgery at the University of British Columbia and Director of Research for the Division of Neurosurgery. He is the President of the Canadian Section of Stereotactic & Functional Neurosurgery

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 1: I have trigeminal/atypical trigeminal neuralgia. This horrible pain started after riding a roller coaster. There was no accident, etc. I just woke up and---bang, I had trigeminal neuralgia. I have constant pain with episodes of extreme, sharp stabbing pains. If I touch my tooth with my tongue, touch my lip (on the left), left chin, I have extreme pain. Have you heard of patients who have had constant pain and triggers benefit from a MVD?

Answer: MVD is most effect for treatment, and possible cure, of typical TN. This surgery will also help about half of patients with atypical TN, and is a better option than rhizotomy procedures that may aggravate the consent aching, burning type of pain. Surgeries, however, are not useful for trigeminal neuropathy. It is therefore most important to establish your own specific diagnosis and this is best done by a neurologist, neurosurgeon, or a pain expert with a special expertise in diagnosis and management of cranial facial pain disorders. Beware, that the term “Trigeminal Neuralgia” is often used to loosely for patients who actually have atypical TN, trigeminal neuropathy and even idiopathic/atypical facial pain.

Question 2: Last summer I had the shingles. It was never treated since it was past 72 hrs before I sought treatment. The rash (quite pale now) is still visible and once in a while I still experience minor pain. The week before Christmas I was diagnosed with Trigeminal Neuralgia. None of the medications brought any relief so far. The pain (day and night) is excruciating and at times lasts for 1 hr and 45 minutes. I did a lot of research on the Internet and came to your very informative site. What I would like to know is the following: would the treatment for this disease be different if it were caused by the shingles? I already had a CT scan that was found to be 'normal'.

Answer: To find the right treatment you need the correct diagnosis. Usually face pain following shingles, known as post-herpetic neuralgia (PHN), is in the region of the face that had been involved with the shingles. It may have some features similar to trigeminal neuralgia (TN), although also is of a more constant, aching, burning quality. While true TN attacks last only seconds to minutes, PHN can last hours or be constant. While it is possible to be struck by lightning twice, or have both TN and PHN, make sure your MDs aren't using the term TN too liberally to describe what is actually PHN.

This error in nomenclature is quite common. The treatments of the conditions are, however, very different and therefore having the correct diagnosis is crucial. Further details about diagnostic features of these conditions are on our website, including the section called " Your Complete Guide to Trigeminal Neuralgia".

I hope you all had a painfree Merry Christmas and New Year and hopefully 2006 will be a better year for yours truly.

On December 18^th , I was admitted to hospital and was in over the New Year until January 10^th. I don’t know how it happened, but along with TN, I apparently fractured a vertebrae . Needless to say, I was not a happy camper, as this was a very painful experience. However, I am happy to report that slowly things are coming back to normal and I am now able to walk without a cane in my home, although there is still pain, but I can manage that. So much for the Golden Years and the joys of being a senior citizen.

I want to wish Sy Moskowitz a speedy recovery from a stroke which he had in the latter part of 2005. The Quebec Support Group in now on hold, so if there is anyone in Quebec that would like to talk to Sy about restarting, I am sure he would be grateful to talk to you.

I would like to thank Stephane Bourque, for translating the December newsletter for us in French. He did a marvelous job and although I cannot read French, I am sure our Quebec members will appreciate the effort of what Stephane has done. To our members in Quebec, although you have received the December Newsletter in English, I will include the French version in our February Newsletter. Please let me know your comments, and email me at : mguzik@telus.net , or write to me at TNAC, 1514 Lakemount Blvd., S. Lethbridge, AB T1K 3K4, as you have been so patient for this to become a reality.

Thank you also goes out to Jan Williams, Calgary Support Group for her contribution to the TNAC News. Jan has resigned the position of Co-Editor of the TNAC News and we wish her all the best .

Please note that I have our handbook “ Striking Back” for sale. They are selling for $40.00, shipping included.

I spoke with you over a year ago about an atypical neuralgia which causes awful pain in my left ear and left side of my face. You were kind enough to reply to me very fast and encourage me to hang on. I appreciated it at a time when I thought I couldn’t hold on. You referred me to the Neurological Hospital and also told me to mention to my doctors about geniculate neuralgia, but the doctors I was seeing at the time really didn’t agree on this. I was even told by a neurologist in Sherbrooke that this was a migraine… and that a couple of Elavil would do the trick… I did some research on geniculate neuralgia and even though there is not a lot of literature on this condition for it is very rare, what I found was incredibly similar to my symptoms. Well, your advice paid off. I have been seeing Dr. Aubé at the Neurological Hospital in Montreal for a year now and then referred to Dr. Denis Sirhan for exploration surgery. Dr. Aubé would not agree on geniculate neuralgia rather thought of glossopharyngial neuralgia because my pain was now reaching my left side of my throat. Nevertheless, he said we would get to the bottom of this and find it. It was my first experience in 14 years with doctors having compassion…

When I met his colleague neurosurgeon Dr. Sirhan about two months ago, his first impression was geniculate neuralgia! I couldn’t believe it; someone was actually naming my pain. He then told me he had seen one case like me, and older man who underwent MVD, and he said my symptoms were very similar to him, aside from my face pain. But he wanted to investigate further because the condition is rare. He sent me for a third MRI, this time a thin cut MRI to have a look at my 7^th nerve. On December 19, 2005 he said they found 3 possibly 4 blood vessels offending the 7^th nerve and the 9^th nerve. I am still in shock of this news. I had been preparing myself for another deception; after almost 14 years of deception your advice was the best one I could have had. I will have surgery probably in March, my pre-op exams are on February 22^nd. Dr. Sirhan wants to perform MVD and tells me there is a chance of improvement for geniculate neuralgia of about 70 %.

The past year was very difficult, and I still can’t believe I was able to come out of those awful agonizing days alive. Probably my hard head had something to do with it, I had to have the last word! I can’t wait to write to the doctors who ignored me and almost drove me to my grave by being so indifferent to so much pain. It is never too late to learn about something you never seen before… I hope they will remember me for the sake of other people in pain. I also wanted to ask you if you had ever heard of anyone with this condition, and do you think MVD is the best way to resolve the pain?

My husband and I wanted to thank you for listening when nobody else did. You gave us some hope at a time I wanted to give up. Thank you for your help and your time. We wish you and your family a happy new year, a healthy one and pain free one. Thanks to you I am living the best times of my life, I can’t wait for this New Year to start, I am very excited to end this and very confident I will get better.

On behalf of myself, please thank all of those who offered their advice and help. My surgery was successful and hope that I will not have to repeat again.

Please feel free to let people know that they can contact me at anytime for more information.

I would not hesitate for a moment on the glycerol rhizotomy. It really wasn't painful and there is absolutely no pain.

Dear Readers,
Over the past two years I have very much enjoyed participating in the creation and production of the TNAC News. It was interesting to do the research for the articles and great to work with the newsletter team. I also enjoyed "talking" to many of you on the phone or via e-mail. Now it is time for someone else to take over. I will no longer be a co-editor of the newsletter nor be part of the production team.
I wish you all the very best and hope that we'll still be in touch from time to time.

Jan Williams

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.

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.

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

Calgary, Alberta

The next meetings of the Calgary support group will be: Sat. Feb. 18, 2006 1:30 pm and Sat. Mar 18, 2006 1:30 pm *guest speaker at this meeting
MacLeod Trail Co-Op; 8818 MacLeod Trail S.
Contact Jan at 295-0987 or calgary@tnac.org for more information.

Lethbridge, Alberta

The next meeting will be on 2 pm Saturday, Feb. 11, 2006 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge.

To Erna Janzen and Betsy Groenenboom a big thank you for doing the Xmas Party. I wanted to go so badly but I couldn’t. I thoroughly enjoyed the plate of goodies that Erna delivered to me. They were so good, so I know that you all got fed very well. The cake that was saved (even tho’ it reads “ Ringing in the New Year 2006”) will be a great treat for our (Valentine) February meeting.

Toronto, Ontario

Next meeting is February 26th/06. We meet at "Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ont." 9:30 a.m. You do not have to be a member of TNAC to come out to meetings. Just bring your story and a smile and a laugh.

For more information, please contact Kathy Somers (905 853-9849) or Sandra Arangio (905 284- 9215) or email toronto@tnac.org

On Sunday Jan 29th we had a great meeting. One of our members had lots of new information about the new drug "Lyrica" and something new that Scott had to offer. He will be talking about his experiences at our next meeting "Sunday February 26/06. Scott introduced a book called "Beyond Pain" by Dr. Angela Mailis-Gagnon. There are 17 copies in the Toronto Public Library system that you can borrow if interested in reading. Allen and Carol we missed you on Sunday. Sandra and I would like to contact you but seem to have misplaced your number. Please contact us and let us know how you’re feeling. Toronto chapter is planning to have a dinner out for anyone in Ontario who would like to join us. Friends and family welcome. Details are not quite finalized. Date planned is Wednesday March 26/06. If you are interested contact Kathy Somers.

2006 MEETINGS: The Boardroom, G.F. STRONG REHAB CENTRE, 4255 Laurel St. Vancouver (Laurel at West 26^th – one block East of Oak). TIME: 10.30 am – 1.30 pm DATES: March 25, May 27, July 29, Sept. 30, Nov. 25

For More information or to talk with someone who has TN contact: Ann Hopkins, Volunteer Coordinator, TN Support Group. Phone: 604 732 1673 or Email: annhopkins@shaw.ca

Hello to everyone. First of all I wish to apologize to you all for being late with this month's issue of the newsletter. As you have read earlier in this issue, Jan will not be able to help with it any longer. So, I bundled up my computer earlier this week and took it to her place. She put me on a real steep learning curve to show me all the ‘in’s and out’s’ of formatting the newsletter.
Wow! I just know I’ll be phoning her occasionally for help! I want to thank her for her contribution as my assistant to our newsletter and I wish her all the best in her new ventures.
That’s it for this month. I hope everybody has a great year.

Patty

*Inside this Issue*	Volume 6, Issue 1 February 1, 2006
Gamma Knife at the University of Sherbrooke Talk by Neurosurgeon Dr. Chris Honey Ask the Doctor Marion’s Desk Letters Member’s News Support Group News Patty’s Ponderings and Miscellaneous Ramblings
	Your financial help is needed to support the TNAC and the local Support Groups. Donations can be made by check or money order mailed to: TNAC 1514 Lakemount Blvd South, Lethbridge, AB, T1K 3K4 Be sure to indicate on your check or MO if you want to donate to a specific support group.

	Newsletter team newsletter@tnac.org Editors: Patty (403) 345-6262