Since Christmas Day of 2007, we have seen a number of Doctors..Neurologists. Our first one who we really liked..moved to Florida. We bumped along without one for about six months. Then we got a really cranky old guy who never returned my phone calls, Far Guy said "Fire his butt" ..then we went to the University of Minnesota..to find out if there was any type of Surgical procedure that would stop the extreme pain..nothing..anything they could do might make things worse. After a few months we were handed off back to our GP .. the one who admittedly knows nothing about TN. Nine months ago we got Doctor P..the reason I know it is nine months ago is that he sees his patients every three months and we have seen him three times.
He has changed a little from our first visit. Yesterday he talked about Teamwork and how we are all a team..and we have to all be on the same page! He also repeated that he is available by phone, just in case we hit a huge bump in the road. He told me several times, If my phone call was not returned the same day I left it..then I should call back again because he had obviously lost the message. I think he may read my blog..as most of you long time blog readers know I believe that teamwork and communication are both key to helping Far Guy manage his disorder. Perhaps I can put away the hatchet, well maybe I should just carry it in it's holder for awhile. Maybe I should exchange it for a magic wand.
Trigeminal Neuralgia is one of the most painful, frustrating disorders that I have ever run up against. That is just my view..I cannot even imagine it from Far Guy's view. Recently we visited with another couple, he has TN also..but Type I..he had surgery at Mayo..and is now pain free. They encouraged us to go there.
Well..I suppose we could seek more opinions. . BUT..over the course of the past 23 months..four different Neurologists have said .." I don't believe surgery is indicated" "Your MRI shows nothing that can be addressed surgically" "I would never send you to Surgery, it may make you worse.. (Anesthesia Dolorosa) " "Your type of TN is best treated with medications." So the dilemma..do we go to yet another Clinic..to find one Neurologist that says "Yes" ..and then have to decide if four are correct..or one??
I would like to wave my magic wand and have it all better. We are not going anyplace else. We are going to stick with Dr P ..I hope he doesn't move or croak.
The support group that we helped to form a year ago..is not active. Far Guy keeps track of a number of people, there are so many people that have it in this area. I did what I could..they are adults..I should not have to lead them by the hand.
We found out recently that some new research is being done. Some research involving mice..their myelin sheath that covers the Trigeminal Nerve is destroyed..after we read the article..We looked at each other and said "The poor little buggers, they can't even talk." " There is no escape for them either, stuck in a lab..how does a mouse commit suicide?" We laughed..but really it was not a laughing situation ..especially if you are one of those very unlucky mice.
Some people are still very insensitive.. they ask me in hushed tones "How is HE doing?" Ask him yourself! The mail ( not misspelled, that guy is on my shit list) person that rubbed Far Guys bald head the other day nearly got it with my hatchet/wand. Ladies for the hundredth time..do not hug my husband..I know he is handsome as all get out and you feel you must hug him..but don't.. your hair will touch his face..he will have pain for hours after your lovey dovy hug.
We got permission from the Doctor to lessen the dose of Neurontin..we will see how it goes. Far Guy is more forgetful, we hope some of the fog lifts.. and that the pain does not increase. It really sucks when you have to decide between fogginess and pain..it is all about finding a perfect combination of medications..we have not found it yet.
So I guess I am not quite ready to turn in my hatchet for a wand yet.. we are finally back to where we were back in August before Far Guy had a Wisdom Tooth magically appear..that had to be surgically removed. TN is a strange disorder..Dr P says it has a mind of it's own... and it varies from one individual to the next.
We just keep keeping on one day at a time:)