Gaye says she is not on any drugs and just has some TN pain a few times per day - usually at night when the sheets touch her face or if she touches her face a certain way.  It is not nearly as bad as it was before her surgery 2 months ago and she has no need to take any drugs at all.  She is hopeful this remaining pain goes away as the nerve heals over time.

Her face is still numb - although that has improved since the surgery.

Message from Bev - re Calgary meeting

it was great and it sounded like everyone enjoyed it..  We had 32 people attend.  I asked Phoebe to be our host and she did a fine job of it.  Dr. Kiss's summer student gave a presentation and then we had an open question period for over 30 minutes which was very informative.  Then we filled in the questionnaire of many, many pages, but it didn't take too long at all as it was just ticking the right answer.  I was very impressed with Dr. Kiss.  She spent a lot of time answering the questions in a way in which it was very easy to understand.  The large social room we had was ideal even Dr. Kiss commented on it.  We just about had the whole parking lot to ourselves as they have no classes running in the summer.  

Mary W was there with her husband and she is doing great.  No pain and no drugs.  She feels like a new person.  Also Gaye M came and she is not doing too well.  She has a lot of numbness and wakes up with pain.  

Note:  Mary had MVD in Winnipeg in July - Gaye had MVD in Winnipeg in March of this year

I'm glad you enjoy the newsletter.

Thanks for letting me know

One time I looked it up and there are 67 different diseases that cause facial pain - TN is only one of them so it doesn't surprise me when it seems so difficult to get a diagnosis.  There are a lot of different options to consider.  Sometimes it takes a lot of persistence on the part of both the doctor and the patient to get to the specific cause of a person's pain.

Just don't give up - you need answers.  Until you know what causes your pain you can't begin to deal with it appropriately.

You're such a wonderful person to do the newsletters Jan!!
Thank you!!
Gina

Hi.  It's been some time that I've visited, however I wanted to thank you all for your notes.  I sure appreciated them.  I guess since I last wrote there was some uncertainty with my diagnosis and really to this date, my neurologist is still not convinced I'm dealing with Trigeminal Neuralgia as maybe my symptoms aren't typical, but it may be time to seek a new doctor as I am convinced this is what I'm dealing with. I had my MRI done, but only the "dry" one was ordered and nothing showed as far as tumours/growths etc.  From reading on-line, I have learned that the "wet" MRI is what is required to see blood vessels, nerves etc. which I believe now is what I need to have done and the doctor should have ordered this type for me (frustrating!).  I gradually have increased my Gabapentin to 2400 mg. /day (4 doses throughout the day of 600mg) and can honestly say it has helped, not 100% but I am at least able to cope throughout a day of work and evening.  As the majority of you, I do not like being on this medicine, but really don't have a choice at this point.  Although I am not faced with sharp disablng stabbing pain, mine is more of a constant intense pressure/ache in the upper face region and without the meds. is disabling.  I have started to try a herbal support (Myelin Sheath) to see if this will make any difference. I've taken it a month now, with no change though - it may take up to 3 weeks.
I have also noticed the food triggers (caffeine (still need a cup in the morning, peanut butter/chocolate/aspartame pop) are aggravating which I have started to stay away from as I would have these quite often.  Stress is an isn't aggravator which can occur daily in my life.  Even being on the meds., these things will intensify my symptoms.  Well, I hope you are all managing.  I must close for now but hope to write again a little sooner than last time.  Take care for now.  I think I'll make a goal to attend the next evening Calgary appointment(if there is one),  as I work during the day and cannot make the afternoon ones.   Bye for now all. Sincerely, Gina

When I was waiting in Calgary for a neursurgeon consult I was told they would send me a letter once they set the date.  I waited a while and then decided that was crazy - so every week I would phone and ask if anything had been settled yet and reminded them I was willing to take a last minute cancellation appointment.  I was always very polite and they always gave me the "don't call us, we'll call you" message.  BUT after waiting several months with no results - on the 6th phone call I got an appointment.  Still had to wait a few weeks, but I did get an appointment date and time.

It hasn't been a week yet since I saw the doctor and he put in the referral, but if I don't hear anything after a reasonable time I will do the same thing again. 

Oh Jan...I'm so sorry to hear that.  I really hope that you are able to get in to see a neurosurgeon soon.  It's not something that should wait!  Has you primary physician given you any idea of how long it may take to get an appointment?  Surely with the results of the MRI, it could be fast tracked!

I have been waiting since January to get an appointment with a neurosurgeon, with still nothing set up.  I pray you don't have to wait that long!
Please keep us posted.

Oh yeah....go buy that lottery ticket....that bird was trying to tell you something! lol

Hey....that's supposed to be good luck!  Buy a lottery ticket.

June

So the newsletter is in the mail.  I hope everyone appreciates what I went through this month - I finished it late last night and this afternoon walked downtown to the post office with my little pile of envelopes.  On the way home a sea gull swooped down at me and shit all over my shirt and pants!!!  yuck!!