Return of pain

[Jan]

Hi Brenda.  Sorry to hear that your TN has come back after all this time of normal (aka pain free) living.  I think the fear of the return of TN is something that all of us have somewhere deep in our minds.  Guess that is why I still keep a supply of drugs - have moved that little stash four times and each time I think I should toss them but can't bring myself to do it.   I figure outdated drugs are better than no drugs at all.

I talked to Dr. Kaufmann about that - told him if the TN ever returned my first call would be to West Jet and he would find me on his door step one day.  He laughed and suggested I call him first so at least they could be ready for me.  I was only half joking.  I think if my TN returned I would go out to Winnipeg.

There was a lady in Calgary who had and MVD way back in 1991 or so.  Her TN returned after 13 years - but only for a while.  She went back on drugs for a few months and the TN went away again like it does.  She now gets a run of TN every 2 - 3 years for a few months but in between she is okay.  And the run of TN is never as bad as it was before the MVD.

So I hope for you this is a temporary set back and it won't last.  Please keep in touch and let us know what is happening.

[Brenda]

Thanks so much, Jan!  That gives me such hope! 
Hopefully I'll be able to go off the drugs after a little while too.
And, the TN is not as bad as pre-MVD.....I was just terrified that it was progressing to that point!
I'll keep you posted,
thanks,
Brenda
p.s. are you going to the conrference in August this year?

[Jan]

There are lots of reasons to be hopeful with this TN including that you are young and healthy enough to have an MVD should it become necessary.  Anthony Kaufmann always tells people to have a plan so that should you get to a point where you want to do something at least you'll know where to start - so get a plan.  Maybe you'll never have to implement it.

As for the conference in August - I don't know.  I've been giving myself a little holiday from all things related to TN.  I did look at the speakers and the sessions and to be honest I have heard most of them speak before and I wonder if they would have anything new to say.  It seems a long way to go to hear the same stuff.  I think I'd rather run off to Regina and listen to Faye's pal, Dr. Buwembo because I've never heard his opinion.   Think Faye would find room for us??

[Brenda]

Hi Jan
Update on my saga........the drugs are making me absolutely loopy and dumber than a box of rocks.  I can't tolerate the high dosage and work too.
I'm seeing my family doc tonight...he will schedule an MRI for me, then I'm going to see a new neurologist.  Hopefully we'll have some answers after that.
Looking forward to some help soon......

[Jan]

I remember that loopy feeling - it is awful - but then so is the pain if you don't take the stuff.  Not exactly a win-win situation is it?   One thing that helped me a bit was to split the daily dose of the drugs into multiple times - so for example, instead of taking 400 mg of Tegretol 3 times a day I took 200 mg 6 times a day.  It also helped to split it evenly - every 6 hours instead of four times a day for example.

Doing that I was able to go from 2700 mg of Neurontin a day to 2400 mg.  Every little bit helped.  I never tried the extended release drugs but that should be better.

Another thing - dig out your conference notes on "Compounding Pharmacy".  Maybe you can decrease the drugs and get good pain relief if you take it as a patch.  That is what they told us.  There is one such pharmacy in Niagara Falls - but maybe there is something closer to you - check out this website for a list
http://www.acpcrx.org/pharmacies.htm

Good luck - and keep in touch

[Brenda]

Hi Jan,

I'm sure getting the run-around this time with our health care system.  When I went to my family doctor, he put me on gabapentin, and tried to set me up with an appointment with a new neurosurgeon (since mine has retired many moons ago).  Anyway, this new neuro said he would not see me without a MRI.  They would not give me an MRI without my medical records from my MVD over twenty years ago.  Apparently, those records are only kept on file for 10 years.  So, no records means no MRI which means no appointment.  Can you believe it!!!!  I am at a complete loss as to what to do next!

Do you know how it works if I were to go out of province to see Dr. Kaufmann?  I'm worried about my Ontario plan not covering it if I did.  I just don't know what to do.  Any words of wisdom?

[Jan]

Don't you ever wonder how it is that things can get so complicated?  Right now I'm trying to get set up with someone out here who can monitor this tumor for me - wish me luck!!

As for your health care covering you - no problem.  IF you decide to go to Winnipeg, they submit the bill directly to Ontario - you don't have to worry.  If you decide to talk to Dr. K either via phone or email - he charges nothing for that.  If you do go to Winnipeg for treatment,  you would be responsible for traveling expenses and anything else not normally covered by OHIP.  At least that is one thing you don't have to worry about.

Why don't you contact Dr. K in Winnipeg and see what he says?

[Brenda]

Thanks Jan....I have sent an e-mail off to Dr. K.  So, we'll see what happens.

[Jan]

Hi Brenda - any word from Winnipeg yet?  How are you doing?  

Are you going to the TNA Conference at the Mayo Clinic in August?

[Brenda]

Hi Jan,

No, I have not heard back anything from Winnipeg yet.  I haven't got any appointments scheduled for any local neurologists or neurosurgeons either.  I'm kind of in limbo right now!

Yes, I am going to the conference in August.  Hope to see you there too?

I'm hanging in there....I have cut down on the meds because I was having a difficult time with them.  The pain has been manageable.

Life goes on......

How is everything out west?

[Jan]

Things are going well out here.  I'm glad I moved.  I had been thinking about it for a long time and just came to the point where I could not think of any reason "why not" - so here I am.  I'm still trying to get organized with the medical stuff but that will happen.  I sure do miss my Alberta Blue Cross every time I go to the drug store to get an Rx refilled I can tell you.

I'm now starting to think about starting a group out here in South Surrey/White Rock.  I know the TNAC has one group in Vancouver but that is pretty far away from here so maybe I wouldn't be stepping on their toes.  No sense irritating people or causing confusion if it can be avoided.

I do not think I'll be going to the next TNA conference.  I think I'll skip this one and wait for the next "western" version.

[Brenda]

Hi Jan,

Well, the good news is that I think I may be in remission for now.  I have cut down the meds over the last month, and stopped completely as of yesterday.  Here's hoping!!  I don't remember the tegretol from many years ago being as difficult as this gabapentin. The withdrawals are like nothing I ever experienced before.  If and when the pains come back, I really don't know if I'll go that route again.  Still haven't got an appointment yet with a new neuro......and no word yet from Dr. K.

At least I have the August conference to look forward to.  I'll come armed with all my questions......

Have you started a new group out in your area yet?  Have you got all your "medical stuff" organized?  I'm sure it takes time, but it sounds like you are happy out there.  Glad to hear it...

bye for now,

[Jan]

Hi Brenda - that seems like a really long time since you wrote to Winnipeg and didn't get a response.  Why don't you try calling Dr K's office.  See if you can talk to Janice.  She is his nurse practitioner and can check things out for you.

Another option, get your GP to fax a letter to Winnipeg on your behalf.  That makes it an "official" referral and Dr. K will answer your doctor for sure.

You can always resend your message.

I didn't much like Gabapentin either.  I didn't think it was all that effective and I gained about 30 pounds which I didn't need.  So if I ever need drugs again I will stay away from that stuff.

[Barb]

hi ladies, I also haven't heard from Winnipeg, although new neurologist report went there a month ago now, Andrea says patient reports are on his desk... I also dislike the gabapentin, but for now it is working combined with the tegratol, which didn't work anymore alone, and Jan I also have some weight gain from it, I don't like that, and I feel so tired that my usual daily walks are more chore than pleasure. On a happy note, we had a lovely snowstorm here in Edmonton on  May 5th, 7 inches and it's still on the ground....  bye for now

[Jan]

We need to clone Dr. K so there is more neurosurgeons with his expertise.  At least when you come from Edmonton with snow on the ground, a trip to Winnipeg doesn't sound so bad.  You've just reminded me of why I moved to the west coast.

The good news about Gabapentin - when you are off that drug, probably for the first time in your life, you'll just loose weight - no trouble at all.  Mind you - just the part you can blame on the drug, anything else you want to loose is the normal hard work!