Sorry I did not see this earlier. There is a support group that meets usually once a month in the Thornhill Community center on Bayview and John. The next meeting is Sept 30, 2012 at 9:30 a.m. The person who sends out the emailed notifications is Kathy, her email is toronto@catna.ca. Please write to her to get further info. I believe they are in the process of arranging their annual TN dinner right now and Dr. Anthony Kauffman from Winnipeg is usually the guest speaker. If you need to reach me I am at ellacjn@hotmail.com

Trigeminal neuralgia
 

Hi, my name is Melissa and I'm very interested In your story. I'm about to meet with my surgeon on Monday to have a cta scan done and then meet with him to set up a date for the microvasular decompression surgery. You mentioned that you have a picture of the scar. Would you please email that to me? I too have really long hair:(

Hi Ellen,
I joined this web site just to talk to you. I am 19 and have been diagnosed with trigeminal neuralgia. Being so young for this, I have been having a hard time finding people who can relate with the pain and fear and obsession that comes with it. While reading your passages, I feel I am reading diary pages from my past couple years because I had to deal with the pain, go to dentists and doctors one after another to find out what was really wrong. Going to school on pain management was hard enough and them being on Tegretal..... forget about it. This whole journey has been a long nightmare and my doctors are now suggesting that I have the MVD surgery done. Images and stories on the internet are terrifying and I am not sure where else to turn for comfort other than someone who has actually been through the whole process. I know it has been a very long time since you had your surgery but I would appreciate any advice or support more than you know. Thank you so much, and know that your story is very uplifting for me.

Some hope from the UK
 

Hi all I have been following Ella for a couple of years now and feel she must have helped no end.

I do not suffer but my wife did. She had an MVD almost exactly a year ago, and has been OK since. Understandably she wants nothing more to do with the subject, but I feel as Ella does that more needs to be made available from those for whom the surgery has been a "success".

I say success but it has only been a year. I am hopeful that we will be spared a return to the dark days. It started in 2003 and one by one the meds gave her allergic reactions until the only thing left was MVD. Periods of remission became shorter, so we looked for the best the UK had to offer.

Nik Patel from Frenshays hospital in Bristol was the one. Only 2 minor problems in over 200 MVDs. We had to go private due to the relationship between the Welsh and English NHS systems, but it was worth it, at least so far.

To say she is clear would be too simplistic, but I believe she is. She has a sensitive face due I believe to the recovery of the nerve. No pain, but some 'creepiness' around her eye and sometimes sensitivity above the eye and around the nose. Dental pain is a thing of the past.

I wont be able to be as forthcoming as Ella but I hope this story gives hope.

July 22, 2013
8 year anniversary of my MVD

I want to keep updating yearly, so you know the long term effects of MVD. I can tell you that as of my 8th year MVD anniversary, everything is still good.

Is it perfect? No.

Is it manageable. 100%!!

As usual, I seem to have my flare ups in the transitional months between Winter and Spring. This year it was late April. I took 1 Tegretol to get me over that day of shocks and it was gone the next day. I wish I had answers as to why this happens, but I don't.

So instead of fighting it, I make sure I still have some Tegretol around and I cope with that day or two.

Other than a couple of bad days, my year is wonderful! No meds, no pain, no TN.

The smaller twinges have tapered off completely since I get closer and closer to menopause. It's because my hormones are not fluctuating pre and post menstrual cycles. You men have it good!!

So I go about my life, still never forgetting that I have TN.

This year I had to have a fair size cavity filled exactly where my shocks used to be, in my upper left back molar. To say I was petrified would be mild. It went off without a hitch. No problems during the procedure or after the freezing wore off. That was a big thing for me.

So for all you people thinking about MVD. Remember, the unfortunate people who post about failed MVD's are not the norm. The success rate is in the high 90%'s. It's just that those people move on with their lives and you don't hear from them on these forums.

This is why I come back every year, to tell you there is hope for a normal life.

If you have Typical or Classic TN and you put yourself in the hands of an experienced neuro surgeon with a proven MVD success rate, you will have your life back. For ATN, the success rate is a bit lower and more individual.

I wish everyone a pain free year!! :) and I'm still around if you want to talk. ellacjn@hotmail.com

Thanks, Ella, for your diary and for continuing to post! I want to add to the encouragement. I had an MVD almost 4 years ago and have been pain and medication free since. I have had a couple of minor twinges in the general area of my TN that scared me, but were not strong and not even clearly in the same spot. And that area of my face is sensitive to breezes occasionally (I had two other procedures before the MVD). But that is all. It is encouraging to hear from Ella that even if I should get an occasional lightning bolt, that doesn't mean I will be right back where I was. In fact, before the MVD even when I had to go back on Tegritol, the pain was never as severe as in the begining (bad, but not quite as strong).

Thanks, Ella! And may you all find the help you need.

I'm still here!
 

Hi all,
I was contacted twice this week about this diary and realized I have not updated anything recently and I missed my 2014 MVD anniversary! That's actually a good thing. It means I am able to forget about my TN a bit.

Just want to assure you, I am still around, still pain and med free, still hanging in. I spend more time on Facebook these days then any of the forums, but I am prepared to write anywhere that people read about TN. As a matter of fact I was interviewed for a story about TN that will be published next week. I will post the link to the story when it comes out.

Hang in there everyone. Wishing you all a pain free life! :circlelove:

Hope
 

I'm 33 years old and have been dealing with trigeminal neuralgia for 6 years. I've been diagnosed with a wide variety of maladies by an even wider variety of doctors in that time. Due to the debilitating pain episodes I've been forced to quit graduate school and haven't been able to keep a full time job for more than 6 months at a time. The specialists in North Carolina have finally agreed that my excruciating facial pain is trigeminal neuralgia. Unfortunately, the medications only lessen the pain in high doses that leave me fuzzy and lethargic. I have a consult with a neurosurgeon on Monday to discuss MVD surgery. At this point I'm willing to try anything but I admit that I'm terrified. It does not help that the internet is heavily skewed towards the negative. Your post surgery diary is the most encouraging thing I've read. It gives me hope that I can get my life back. Thank you.

awaiting mvd
 

Hi im going for pre op in april how long after that can I expect my surgery. Also I ride a motorcycle or did before wearing a helmet became impossible. Can anyone tell me how long after the op will I have to wait to wear a helmet . I read that you can't wear a wig for six months and a helmet is a lot tighter than a wig ??? Any advise welcome .

July 22, 2015
10 year anniversary of my MVD

Hi all, wanted to pop in and post a real milestone for me. Today marks the 10 year anniversary of my MVD and I'm doing great! It's been a quiet year for my TN physical pain, nothing to speak about there. From an emotional perspective, I'm starting to let TN take a back seat and not allow it to be front and center in my life any longer. Dare I say, I've moved on? Don't get me wrong, I still take no day without it for granted.

Since I've hit menopause I seem to be much better. No more huge hormonal fluctuations which only proves that my theory about premenstrual TN shocks was accurate.

I still haven't had the guts to get into an airplane, which is where I had some of my worst attacks. Pressure is still scary for me.

I am moving on!!!:D I have written a book (not related to TN) and it is being published and release on October 6 of this year. I may have to face flying sooner than later if the publisher wants me to go on book tours. I'll definitely need some Adivan for that first flight!.

I wish you all well, and I am always happy to talk. ellacjn@hotmail.com

If you would like to see what I have written, here is a link:

www.hiddengoldbook.com