Hi, hejhog, and welcome,

As BMW mentioned, Ella, who wrote the MVD Daily Diary thread - MVD-post surgery daily diary - hasn't checked in lately, but she's from Toronto and may be able to help direct you. Also, there are a couple of Canadian Trigeminal Neuralgia Associations and Support Groups up there where you should be able to get some help and support and maybe some doctor recommendations -

Trigeminal Neuralgia Association of Canada

Canada TNA

Your case certainly sounds "classic" so the meds should kick in at some point. But do find yourself a neurologist who has treated TN and is familiar with it in all its variations - somebody who says they don't know what causes it is not for you. And if you do decide on surgery, interview a number of neurosurgeons and find one who has had a lot of experience and an excellent success rate.

Take care and good luck with the meds. It can take a while to get up to a therapeutic dose, but once you do your body will acclimate to the side effects in time and hopefully you can find a balance where you're painfree with minimal side effects. Take care and do keep us posted.

Jean

Hi Hejhog
Jean sent me an email telling me you were here. I have not checked into this site in ages, I actually forgot it was here. i usually check the Braintalk site for newbies. I guess I'll be checking here more often. Thanks Jean.
First let me tell you that I am in Toronto too. I have lived with TN for 13 years up until I had my MVD in July /05. Of course it was not my first choice, as a matter of fact it was my very last choice. After increasing my meds all the way up to 1200 mg of tegretol and still having breakthrough pain I knew I had to bite the bullet and at least look into an alternative procedure. I am very big on doing my due diligence in any situation. So I researched, went to lectures, did a lot of investigating and interviewed 6 neurosugeons in Toronto's best hospitals. I finally came up with Dr. Michael Tymianski and Toronto Western. He was the most experienced in MVD and he seemed to make me feel like I was making a big thing out of this when it could be over in no time. I walked out of there feeling nervous, but sure that I was going to go through with it. I don't know if you've seen my online diary that I kept while I was recuperating, but it is on here somewhere. I have actually elaborated on it in the Braintalk site, but I will update the one here as well.
It is unfortunate that you have an allergy to tegretol and I think that family of drugs works best for TN and it is a sure way to diagnose it as well. The fact that you took it for a few days and it worked speak volumes. I know it is rough living here in Toronto with out health care system, as it takes so long to get in to see someone and in the meantime you have no choice but to suffer. There is also an excellent doctor in Winnipeg named Anthony kaufmann. Many Canadians opt to go all the way there for treatment. Do you have the book Striking Back? If not, please invest. it will spell out your options for a more tolerable life. You should be able to get this thing under control one way or another. It does sound like you have classic TN and in the "TN world" that is the best scenario. Please feel free to PM me anythime and I will give you my email address so you can stay in touch with me directly. If there is any information I could provide or help in anyway I would be more than happy too.
There is also a growing community of young people suffering with TN on facebook. Interesting how we all manage to find eachother. As a matter of fact there is another girl from Toronto on there who just came back from Winnipeg. She had a second MVD as her first one did not hold for very long. Unfortunately she did not have classic TN and her case is much more complicated to cure.
Just to let you know I am 2 years and 4 months post surgery and still pain and medication free (but whose counting!) ;)

Hello everyone!

I've been busy trying to get caught up at the office b/c I've missed so much time. Feeling good at the moment.
I went for a second acupuncture treatment and 10 minutes later I was starting to have a lot of pain. we had an invitation to dinner at the Air Canada Centre here in Toronto and to watch the Leafs game and I was in pretty bad shape until the red wine kicked in in the 2nd period (which I had to sip very very slowly). I'd say the pain lasted about 2 1/2 hours. Not sure if the acupuncture set it off or not. It didn't bust out into a full fledged attack, thankfully, but it was very difficult to keep a brave face on, I found, and to be sociable. Today's been great though with only a few zings here and there.
I faxed over $600 in claims to my health plan for drugs and acupuncture and it's only been a month and a half!!! I hope they pay up.

Thanks JeanC. I'm sticking with the Gabapentin, around 1800mg per day [BMW, I told my doctor today how much I was taking and he just changed the prescription to match it;)]and the occasional Baclofen 10mg thrown in for good measure. I quit taking the Tramacet, so I have a veritable pharmacy of unused T3s, Percs and Trams built up. Good time to break a leg or something.

Ella, great to hear you have continuing success. I am going to investigate the possibility of going that route earlier than later if it is medically indicated. Dr. Kaufmann replied to my e-mail so I might set something up for a meeting, maybe even next month. My fiance's from Winnipeg so we get up there once in a while anyway. I will definitely take your advice and I'm a fan of due diligence too.

I'm getting an MRI this weekend at North York General so hopefully they'll pick up on something.

I'm in line to get a CT for good measure at some point too. Hopefully I'll get some definitive answers. I'll definitely be in touch Ella for your well earned knowledge, as I see how things play out for me.

Take care everyone.

you will be in my thoughts and I hope things start moving in a good direction
starting with this mri your getting. Glad you can chat with one from home ground in Canada as I can only guess things are diffrent there with hosp. ..
the only thing I know about Canada is that my FAV rock band is Canadian RUSH :) :) seen them 5 times .
all the best with the docs. Hejhog we are all thinking good things for you. .
Peace
BMW

Thanks BMW. If you like Rush, You should really check out the Tragically Hip. Way better than Rush. They have to be the greatest Canadian band to never make it globally. They're unbelievably talented.

I'm happy to say that I've had nearly two weeks of normalcy. I figure the drugs have finally kicked in and except for the few jabs of pain in the morning and the odd one here and there, I'm pain free:)

I had my MRI last Saturday, 2 am, but it is just to rule out a tumour. I doubt it will have any diagnostic value as far as nerve compression goes, but its a start.

I still hope to get things figured out though, I'm not satisfied to just be pain free and not figure out the actual cause of the original pain in my case;

Thanks to all you who have come before, we know better; we don't need to be satisfied with controlling the symptoms as we can strive for a cause and a cure, yes? Yes.

Hello again all, long time no talk. The Gab's been working.
New development: I had an MRI on Nov. 24. I called my family doc today to see if they had a report b/c I have that neurologist appointment tomorrow.. DR. Yufe--- Well, lo and behold, the doc phones for the report and calls me back at work to tell me I have:

1. Left CP angle epidermoid 3.5 cm AP x 3.4 cm craniocaudad
2. large cisterna magna centrally and extending laterally to the right in the posterior fossa.

I just expected it to come back saying, largest human brain we've ever encountered, but no such luck.

Well, so much for Typical Neuralgia.

The good news is it is a benign slow growing cyst.

What would you rather have, venous compression of the trig nerve or cystic compression? I don't know either. We'll see what Yufe has to say tomorrow.

Probably the same type of surgeon for both procedures no?

You can do it!
 

hi heghog, you are in he position that I was in 5 yrs. ago. I refer to it as the darkest days of my life.
You will get through it, but it will be a rough road for awhile. I know it is very
difficult to think of a day when the pain will cease to be, or be on a much less level.
I was terrified to move, talk, or eat. The lightning strikes were about more than I could bear. Just getting through the next minute, the next hour, the next day
was the hardest thing I have done in my entire life.
My first MVD failed, then came 2 balloon decompression surgerys. They failed also. I was directed to Mayo clinic in Rochester, Minn. I had to lay down all the way.
One of the top neurologists in the world did another surgery where he partially
cut the trigeminal nerve. I was put in the pain unit as the pain was absolutely the worst ever. He took me back to surgery where he severed the trigeminal
nerve completely. I was in Mayo for three weeks. One side of my face is numb
but I now live with a different pain that there is no surgery or meds that will take it away. Anesthesia delorosa, thats the name of it. I would rather have the pain that I have than the pain and lightningstrikes in my face that scared me beyond words. You see I have been to hell and back, but I can eat, talk and smile. I will put you in my prayers and I know you will go down the other side of the mountain.
Truely a believer,
Doodle bug 7:D