The TNAC News

Balloon Compression Rhizotomy

Submitted by Dr. Z. Kiss, Functional and Stereotactic Neurosurgeon, Foothills Hospital, University of Calgary, CIHR Clinician-Scientist, AHFMR Clinical-Investigator

and Ms. J Williams former emergency nurse and EMT/Paramedic instructor and current Calgary TN Support group leader.

Trigeminal Neuralgia is a disease characterized by sudden and severe episodes of pain. The pain is often triggered by simple things like touching the face lightly, brushing the teeth of applying make up.

Medications are the first treatment usually prescribed for Trigeminal Neuralgia. In many patients the disease can be treated for years using the various drugs available. However, for those patients who are unable to control the pain with drugs alone or for whom the side effects of the drugs becomes intolerable there are surgical options available.

One of these options is the “Percutaneous Balloon Compression Rhizotomy.” This is a procedure during which the Trigeminal nerve root is damaged by compression with a balloon at the end of a needle. The term “Rhizotomy” actually means to damage a nerve root. The “Percutaneous” means through the skin.

With the patient under a general anesthetic, a needle is passed through the cheek into the skull so that its tip lies along the Trigeminal Nerve. A small catheter with a balloon at the end is passed through the needle and the balloon inflated for a minute or two to cause an injury to the nerve. The neurosurgeon uses X-rays or a fluoroscopy to ensure the needle and catheter are in the correct place.

This procedure is a good option for those patients who do not need to have 15 years of pain relief from Trigeminal Neuralgia (as would be the median for Microvascular decompression, MVD), or who have other medical conditions making a major surgical procedure such as MVD too high a risk. Many patients prefer the simpler, same day minor surgery procedure of this rhizotomy.

About 85-90% of patients will find that the TN pain disappears immediately after the balloon procedure although for some patients it may take a day or so for the pain to go away completely. The pain free period varies from person to person, but half the people will still be pain free after 5-7 years. This procedure can be repeated if necessary.

Most patients will experience some degree of facial numbness post operatively. This will decrease over time. The numbness indicates the nerve has been damaged which is the aim of the surgery. About 1 in 4 patients notice some weakness in the chewing muscles after the surgery. This is usually temporary and will resolve over the first few months. A recurrence of cold sores on the affected side of the mouth is quite common and not concerning; this occurs because the herpes virus that causes cold sores lives in the trigeminal ganglion and may be activated by the rhizotomy.

A small percentage of patients (up to 5%) may experience some other complication. These complications include meningitis, a cheek hematoma, and double vision, loss of the corneal reflex, anesthesia dolorosa, or a sudden rise or drop in blood pressure.

Patient Information

Pre-op

· The anesthetist and neurosurgeon will likely order some blood tests, a chest X-ray, ECG and in some instances an MRI.

· You may be advised to stop taking aspirin or other medication that interfere with blood clotting for 1 week prior to the surgery to help prevent bleeding.

Post-op

· You will be given a schedule for the withdrawal of any drugs you are taking for TN. Follow this schedule closely as drugs such as Tegretal should not be stopped abruptly.

· Ice packs against the cheek will decrease bruising and swelling

· Report any of the following symptoms to your doctor immediately:

o Headache not relieved with Tylenol

o Fever

o Stiff neck

o Drainage of clear fluid from the nose or down the back of your throat

o Chest pain or shortness of breath

You should be able to resume your normal activities within a week

Note: look for the TN stories of 3 people who had this procedure performed by Dr. Kiss on October 21 in this newsletter.

Support Group News

Calgary, Alberta

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on Nov 16, 2004 at Confederation Park Senior Centre; 2212 13^th St. NW. Contact Jan Williams at 403-295-0987 for more information or email calgarytnac@hotmail.com.

Lethbridge, Alberta

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, Nov 13, 2004 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. For more information please contact Marion Guzik at 403-327-7668.

Toronto, Ontario

The Toronto Support Group will meet on Nov 28, 2004, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. For more information, please contact Dana Lavrence at 905-886-756

Marion’s Desk

Marion has been away in Ontario for the past month. She will give everyone an update on her meetings in the December newsletter. If anyone has written or e-mailed her during October, please be patient, she is just now home and able to deal with her mail.

From our Members

American Neurological Association Annual Convention

It was my privilege to join Marion Guzik and Dana Lavrence at the annual convention of the American Neurological Association in Toronto. There were over 900 Neurologists and Neurosurgeons from Canada and the USA registered at this conference.

The TNAC had an information table located in the main conference registration area. As a result most of the participants walked past our table at least twice each day. Not many stopped to chat but it was a great opportunity to increase the profile of the TNAC. Hopefully when one of these doctors next sees a patient, he’ll remember that we exist and can provide some support and encouragement to his/her patient.

Jan Williams, Calgary

Letters

Book Review

Astrid from Ontario wrote: Last week Wednesday I got a copy of "Striking Back - The Trigeminal Neuralgia Handbook". I just finished it. This book is amazing! It is not only informative but very well written. It explains how the nerves work, how the different drugs affect you, the various surgical options, even a chart comparing all the different surgeries. It has a section for loved ones to help them deal with someone who has TN, and also a chapter on alternative therapies. I think I may just read it again!

I highly recommend this book to anyone who has TN or has a loved one with it. It is available from TNAC for $30.

Good judgment comes from bad experience and a lot of that comes from bad judgment.

Members’ News

Speedy Recoveries to:

John Block, Calgary

Jill McLeod, Calgary

Ron Russell, Calgary

Marilyn Najm, Banff

Recipes:

PLUM (or Peach) COFFEE CAKE

From Patty’s Kitchen

This cake is awesome. When I first made it for my hubby, he wasn’t exactly sure that he wanted to try it. He isn’t a real fan of plums. He tentatively took a very small spoonful at first. After he tasted it, he said it was one of the best he had tried. I made it with Peach’s the third time and it was even better!

¾ cup sugar

½ cup butter (butter is better than margarine in this recipe)

1 egg

1 tsp. vanilla

1 ¼ cup flour

2 tsp. baking powder

½ tsp. salt

½ cup milk

6-8 fresh ripe purple plums (or 1 can peach’s, halved or sliced)

½ cup light brown sugar, firmly packed

3 Tbsps. Flour

½ tsp. cinnamon

3 Tbsps. Melted butter

¼ cup chopped nuts (if desired)

Cream together the sugar, butter, egg and vanilla. Sift together the flour, baking powder and salt. Alternately add milk and dry ingredients to the butter mixture. Spread into a 9” square cake pan, greased and floured) and top with rows of plum slices. If using peaches then slice them into about ½” thick slices. Combine rest of ingredients until crumbly (not smooth) and sprinkle over the fruit. Bake in preheated oven (350 degrees) about 35 minutes until done. Cut into squares.

You can use fresh peaches if so desired (peel first) but I found that the canned ones are easier for me.

TN Stories

On October 21, 2004, Dr. Kiss performed the Balloon Rhizotomy procedure on a number of people in Calgary. The stories of some are included here and next month we will include a “health update” on each of these people. This first report was done 24 hours post-op...

Jill has had TN for 8 years. She has managed the severe episodes with Tegretal. 24 hours after the balloon procedure she is pleased to report that she has no pain and no numbness. She feels great. One week later – Jill is still pain free. She does have a big cold sore but that is starting to heal now too.

Ron has had TN for a few years but it was not really severe until February of this year. He has had multiple attacks of pain every day. When he woke up from the anesthetic he noticed some numbness in his face and cheek – but no pain! He spent the first evening testing the effect by touching the trigger points – and still no pain. The morning after surgery he washed his face without pain for the first time in almost a year. Then just because he could, he washed it again!! Ron says he is really grateful to the Calgary group for their support and for directing him to Dr. Kiss. Nine days later Ron says he has some “jabs” returning. Not as severe as before. Prior to surgery he had several big jabs each hour and now he has a few in the morning when washing his face and brushing his teeth and other than that only 1 - 2 per day.

John has had TN since 1991. He also had Glossopharyngeal Neuralgia. Both were treated with an MVD in 1997. The Glossopharyngeal Neuralgia has not returned but the TN did after two years. Since then he has been on large doses of Carbamazepine and Gabapentin. He woke up from the surgery yesterday with what he calls “comfortable numbness”. He has no pain and is looking forward to the next few weeks when he can get off those drugs and walk around without crashing into walls and doorways.

www.tnac.org

We are planning a revision to this web site in the near future. Your suggestions and opinions would be greatly appreciated. Please send them to Patty Moyer or Jan Williams at jan.williams@shaw.ca

Recently on the forum, a lady wrote to ask about the likelihood of a recurrence of her first TN attack. Her family doctor had advised her that it was normally a “once only” disease but everything she had read indicated this was not quite the truth. We asked Dr. Kaufmann to reply and his answer is:

The first attack of trigeminal neuralgia is distinctly memorable for approximately half of TN suffers, and 20% will also recall "prodrome" of tingling or minor discomfort in the region of the face that will later become affected by the true TN pain.
The disease is always progressive, in that the severity, duration and frequency of attacks increased over time. However, the speed of progression varies considerably between people. In some, the disease may continue to advance over the course of months with no letting up. In most people however, after the first attack there is a period of remission with no further face pain.
These remissions can last weeks, months or even years. In the past, a variety of misdirected unuseful treatments were credited with relief of trigeminal neuralgia pain, while in reality the natural disease remissions were responsible. In all individuals with true TN, the remissions will end and another flare-up or exacerbation occurs. As stated above, the periods of remission become more brief and less frequent, while the exacerbations increase in frequency, duration and severity.
Fortunately, there are effective treatments. Medications can be adjusted up and down to control pain during periods of exacerbations and remission. This is effective for most TN suffers, although approximately half will ultimately require some form of surgical intervention as the pain becomes too severe to be medically controlled or medication side-effects become intolerable. A variety of nerve injury or rhizotomy procedures are effective, although often provide incomplete or non-permanent pain relief. Microvascular decompression may successfully cure the disease by eliminating the culprit cause, the neurovascular compression on the trigeminal nerve root.

Dr. A Kaufmann

Patty’s Ponderings and Miscellaneous Ramblings

Hello to you all. I hope you have had a good October and you are all ready for our winter. I know I’m not yet. In fact, I don’t even want to think of the cold or snow.

I hope everyone will participate in the TNAC Questionnaire that is in this issue. It is important for us to try to help one another. Without your input, it is almost impossible.

If you are in need of answers or if you have any concerns regarding TN or other facial pain, please get in touch with us. If you are in a Support Group area, please get in touch with your Support Group Leader. We can only help you if you let us know what is going on.

Concerning the monthly newsletter, as of November 1, 2004 the online edition available for viewing at the web site (www.tnac.org) is going to undergo a little change. We are going to publish only a partial issue online. We are making this change to provide a better service to the members of the TNAC. All paid members will either be “snail mailed” your issue or get it via email, however you have chosen to receive it. If you have any questions regarding this decision, please email Patty at pgmoyer@telusplanet.net.

That’s it for this month. I hope you all have a good November.

Patty

HAPPY BIRTHDAY AND HAPPY ANNIVERSARY

TO THOSE WITH November CELEBRATIONS

TRIGEMINAL NEURALGIA QUESTIONNAIRE

(Cut and paste this questionnaire and send it via e-mail to Patty pgmoyer@telusplanet.net)

The TNAC is putting together this questionnaire in order to better have a resource that all members and/or family members can access in order to help them through the difficult time of a TN episode. Through the experiences of our members we can help to assist one another.

Participation in this questionnaire is voluntary. You do not need answer every question but the more you answer, the better you may be able to help other TN sufferers.

After we have received some of your completed questionnaires, we will publish the information in upcoming newsletters.

You may return the questionnaire’s by snail mail to Marion Guzik (her address is on page 1 of this newsletter) or by email to Patty Moyer at pgmoyer@telusplanet.net. Your participation in this endeavour is greatly appreciated. Thank you from the TNAC.

1) What medication(s) are you currently taking? What is the effectiveness and, if any, what are their side effects?

Medication	Effectiveness	Side effects

2) What medications have you tried previously? What was the effectiveness and side effects of those previous medications?

Medication	Effectiveness	Side effects

3) What external factors do you find triggers an episode (ie: weather change, wind, heat, stress, gardening, etc.)?

4) Have you had any surgical procedures and what was the outcome of those procedures (good and/or bad)?

Procedure	Outcome

5) Do you feel that your TN was brought on by a traumatic experience (ie: head trauma, car accident, dental work, etc.) and, if so, what was that experience?

6) What other types of non-traditional medical treatments have you tried (ie: acupuncture, homeopathy, chiropractic, etc.) and what were the results of these treatments?

Procedure	Outcome

7) Have you tried any other procedures/treatments and if so what were they and what were the results?

Procedure	Outcome

8) During an episode what, if anything, do you do to help you through this period?

9) How do members of your family assist you during an episode of TN?

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