June 2007
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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 is $10 per year. Newsletters are available free by e-mail, and for $6 per year by Canada Post.
Contacts:
Western Office: c/o Jan Williams, 15 Everstone Dr. SW, Suite 207 Calgary, AB, T2Y 5B5 Phone: (403) 295-0987 Eastern Office: c/o Kathy Somers,
Phone: Kathy (905) 853-9849 Sandra (905) 284-9215 Valerie (416) 588-4951 Contact Jan for a full list of people in your area.
Disclaimer: The information in this newsletter is not intended to diagnose or offer advice on treatment of TN. Its sole purpose is to provide information so that you, working with your doctor, can make informed decisions on your own care.
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Support Groups
Meetings
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. Family and friends are welcome.
“Together we will end the pain”.
Support Group news
Calgary: The dentist scheduled for the June 23rd meeting has cancelled so we will have our meeting without him. Please note the location for this meeting: Macleod Trail Co-Op.
The May meeting was held at the Superstore Community room. While to room was nice and easy to find the ambient sound of the A/C was a real problem. It was difficult to hear each other. If this can not be corrected, we will not be returning. Watch the notices carefully to see where the meetings will be.
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Saskatchewan
The first meetings of the new support groups in Saskatchewan were held on May 5 and 6th in Regina and Saskatoon. In Regina Faye will start regular meetings in the fall. In Saskatoon Dee will organize meetings the first Sunday of each month starting now.
Already Dee has heard from 6 new people who want to join the group. The group is growing – good work Dee.
Toronto area
Thank you everyone that attended the CATNA dinner and making it such a great success. 62 of us enjoyed dinner. And a very special Thank You to Dr. Kaufmann for joining us.
(Sandra, Kathy, Dr. Kaufmann and Valerie)
The Toronto North chapter would like to thank Deanna (she won the 50/50 draw) at the dinner, and donated her winnings back to the Toronto Chapter.
Kathy Somers, Deanna Somers, Pat Steenbergen, Becky Benson walked for MS in Toronto raising $880.00. Thank you to family and friends for your support and donations. Thank you to Katie Chisholm who walked in Burlington Ontario for MS and raised $600.00
Christie’s TN Story
Trigeminal neuralgia is the one thing we would not wish on our worst enemy, we all suffer but now with CATNA we don’t have to suffer alone. My story starts like so many others in 2000 Christmas Eve I thought I had a toothache. After two root canals and several visits to the emergency, I learned I had Trigeminal Neuralgia. I was thirty-five at the time and had my own business. I spent months with my neurologist trying different drugs; Tegretol, Neurontin. You all know the drill! And many MRIs and Cat scans and all that fun stuff. Then I was sent to a neurosurgeon. He suggested a MVD, promising me relief. He also said it could be done twice if not successful the first time. So in July 2001 I decided to take the risk. After all was said and done it wasn’t successful. I had so many complications from the surgery they decided it would be far too dangerous to attempt it again. In the process my right vocal chords were paralyzed so talking or swallowing solid food was a huge problem. There was also nerve damage in my shoulder and neck and I lost use of my right hand for two months or so. Apparently this never happens and they still don’t understand what went wrong. I went to every other neurologist in the city and also sent my charts around the country. My options after all this were none. I spent the next five years at the Calgary Pain Clinic trying more medications for my nerves but I could not tolerate any of them so pain killers like Oxycontin, morphine, Tylenol 4 and Botox became my main pain relief. Other options were explored like acupuncture, massage, physio, and they even sent me to psychiatrist that was a laugh.
After years of losing hope as well as my business and was at my breaking point, my husband’s company sent me to a private clinic. They were wonderful there! They really seemed to want to help. They first had me try IMS that is a form of acupuncture but goes to the main trigger points that starts the pain giving me some relief. Then they decided to try trigger point nerve injections, which are needles that have a freezing sensation that can give me days of relief. This continued on over the next six months. My doctor also consulted the doctor at the pain clinic, to assist her with nerve injections. Because it was a costly venture and the pain clinic would share in this burden, which was a great relief to my family.
Continuing with this journey, the clinic sent me to the Calgary Spinal Care Clinic to continue finding out more about where the pain triggers actually are. After many X-ray guided injections to the nerve they found some of the sources of the pain, and four weeks ago I went to Foothills Hospital where they did a nerve oblation. That is where they burn the trigger point nerve so it can’t send the pain message to the brain. The first couple weeks weren’t pleasant, but we all deal with pain in our own way. There is still pain from the other trigger points but I am waiting to get an oblation for them. In the meantime I am basically pain free and life is liveable again. I have great hope for my future. I hope this helps anyone who thinks there are no options. I also would hope you all have the love and support of your family and friends during your painful ordeal. My husband has been my lifeline over the past seven years and without him and his love, and my father’s support I don’t know if I would have made it.
Take care, Christie
We would love to hear from you – drop us a note to tell us your story – we’ll put it into the next newsletter.
Having an MVD
By Jan Williams
The Microvascular Decompression (MVD) surgery is the best chance for most of us with TN to have a life free of pain. However it is major surgery and most people are concerned and worried about the experience. This is the story of my recovery. I did a lot of unnecessary worrying before the event!
My surgery was scheduled for 8 am. I woke up briefly in the recovery room - then really became aware of things once I was moved to the “step down unit” about 5 pm. When you wake up here is what you might find:
· at least one IV running
· You'll likely be connected to a heart monitor
· most likely have oxygen running - it helps decreases swelling in the brain
· the head of your bed will be raised slightly - again to decrease swelling
· the stockings and inflatable pants will be on your legs to reduce the chances of a blood clot
· you'll have a urinary catheter in place attached to continuous drainage
· they may have other monitoring devices attached - like something on your finger for monitoring pulse and blood oxygen levels and maybe a blood pressure cuff
· some people will have full feeling or ringing in the ear – this is temporary
They will wake you once an hour to check for all the vital signs and will ask dumb questions like “do you know where you are”, “what is your name”, and “what day is it.” All questions designed to make sure you are alert and have no brain damage.
They will also be watching carefully for signs of a CSF leak - clear fluid from the ears, nose, down the throat, or from the incision. This isn’t common but is something that needs to be treated when it occurs.
Likely you'll have a headache - which will be treated with narcotics. Most people have some nausea - again treated nicely with drugs. You may also have other stiff and sore spots - your neck or perhaps your hip from laying on it for so long during the surgery.
Some people also have a dry and sore throat from the tube they use during surgery to help you breathe.
However - none of that is even close to a TN attack!!! And the drugs they give you take care of it - unlike a TN attack which doesn't respond to much of anything.
I believe in getting active as soon as possible - I think you heal so much faster. So I was able to get up the next morning (about 12 hours post-op) and walk unassisted down the hall. At first I didn't go far but by the afternoon I was able to walk up and down two flights of stairs.
For the first 7 - 10 days you'll need frequent naps during the day. Take them so you don't get over tired. That will you send you backwards for a couple of days.
Drink lots of fluids - anything but alcohol - that helps with the throat and also prevents bladder irritation from the catheter. The catheter is removed as soon as you can walk to the bathroom. As soon as they told me that I was in that bathroom!!!
You might feel a little "spaced out" until all the anesthetic wears off - about one day for each 1 -2 hours of anesthetic.
You might also feel euphoric as you start to decrease the TN drugs and the pain does not return. This is the very best part – no TN pain.
You must avoid heaving lifting, bending over, getting constipated or anything that might increase the pressure in your head for about 6-8 weeks. That means no vacuuming, getting someone else to make the beds and carry groceries. But you can do anything else - as much as you fell up to doing.
Almost everyone is on steroids for the first few days - maybe 5-7 days - again to reduce and prevent the swelling in the head.
Some doctors have different routines - like most will allow you to shower and wash your hair after 24-36 hours as long as you dry your head well. Others may put on a bandage for a while and you can't shower until that is removed. Better ask about that one.
Some doctors use stitches - and some clips - those will be removed at some point. Again - it varies from doctor to doctor what they prefer. The scalp tends to heal pretty fast so it can be anywhere from 3 to 10 days.
After about 2 weeks you'll notice the naps decreasing and you will find yourself feeling better and better.
My only regret is that I waited so long to make the decision. Now almost 4 years later I am doing well and have not had one TN attack since that day!
New Support Groups
The best thing about a support group is find people who truly understand what it is like to have TN. It is great to share stories, information and experiences.
If there is no support group in your area, contact us – we will help you get started.
Your help is needed
Have you had Gamma Knife surgery? If so we need your story! Contact Jan calgary@catna.ca or phone (403) 295-0987.
From the CaTNA Team:
We wish everyone a great summer!