Tuesday, November 3, 2009

Hatchet or a Magic Wand?: TN Update

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:)


Unknown said...

I feel for you, I can't imagine what this is like. Thanks for reminding us, I will keep you both in my prayers. Sending you (((Hugs))) the painless way! ;D

Rae said...

It must be so frustrating for both you. I know how it feels to have something take over and control your life like that. Unless anyone else has lived it, it is hard to describe the emotions that surround it. It has to be difficut changing doctors so often. It is sort of like a roller coaster ride.
I will keep both of you in prayers and hope for a breakthrough for Far Guy real soon.

Anonymous said...

Hi Connie, I am thankful that your present Dr. is at least working with/communicating with you and promises to return calls. We are always tempted to try just "one" more Dr./facility to see if maybe they know something someone else didn't. At some point, we have to make the decision to trust that one person and pray that the Lord blesses that person with compassion and wisdom and an earnest desire to improve the situation. I pray that is what you have with this Dr. God bless you both.

demainca said...

I love the poster! Far Guy has my thoughts I hope this Dr. is the right one. Shopping around for one is one of the hardest things you can ever do. No one understands what it is like if they never suffer from headaches or lives with someone who does. Migraine is mine I take all the meds the daily doses, the ones when its starts and this month nothing is working, well, there not as bad but they won't go away. I can't imagine what his is like. I hope this Dr. has the answers and maybe the surgery is it. Hang in there I am in your corner rooting for you!

Unknown said...

Wow! I didnot know you guys were going through all this! I hope he finds relief ,soon! I can say the Mayo is the most awesome place in the world! I went to them when cancer was found, I went in on Monday, met with a doc, they scheduled tests, had tests on Tues, got results on Wed and saw the surgeon and had surgery on Thursday - yes, all that fast. They know many people drive/fly from long distances, so once you're there you are there until you're fixed. And every single person was friendly and helpful and full of strength and encouragement - not one person there in my many months of chemo and tests and such was - they are all outstanding!

Nezzy (Cow Patty Surprise) said...

How horrible for you both to go through. I will remember him in my prayers. I'm so happy you found a Dr. who will communicate and work with you. That covers masses in today's world.

Have a good day and thanks for sharing. God bless!!!

L. D. said...

It is a frustrating situation, but you must have a hatchet as no one will carry it for you. I can't believe I am telling you that, but you have to be your own advocate. The pain is real, and your pain is also real. I find wisdom comes at the time that it is suppose to come, so if and when Mayo seems to be on the list, do it. The best thing is that you are talking about it and not ignoring it. Just if we can get to some doctor that also isn't ignoring it.

Emma Rose said...

Hi Far Side,

I have 2 things to say :) First - I grew up with a sign exactly like the one in your picture "Goodbye cruel world". I couldn't believe it when I saw it.

Second - Leave no stone unturned. The next opinion (Mayo) could turn out to be a doctor that is an expert at TN. Just my opinion :)

Emma sends kisses for Chance

The Duchess

Lindy said...

Hoping there are better days ahead for Far Guy. Good luck with this doctor and, for what it's worth, I would not rule out a visit to Mayo if it is at all possible. You may always wonder if you don't give it a shot. Sending up a little prayer for all of you!

DJan said...

Before this I had never heard of TN. It sounds just awful. Is there any hope of getting that Mayo clinic to just look at him and either confirm or refute the previous diagnoses? It doesn't sound like these doctors have much sympathy with what seems like horrendous pain. My prayers and hopes for relief are with you...

Gail said...

I have heard many good things about Mayo. Some people here in little ole Arkansas go to Mayo. They say, you can fool around here and maybe get it fixed or go to Mayo and get it fixed quickly.

I wish you wellness.

Girl Tornado said...

I cannot even begin to imagine what you and Far Guy have been through with this terrible and painful disorder. Sending my hug and prayers to both of you... virtual hugs for Far Guy! :)

Oh, and a slobbery kiss for Chance too.

That Janie Girl said...

I pray Far Guy has FAR better days than what he's presently experiencing. It must be tiring for y'all. I'm impressed that y'all keep on keeping on...you both inspire us!


Roxane B. Salonen said...

Connie, the update was good. I know what a handsome guy he is and I think of you and your trial often. If this isn't suffering, I don't know what is. And yet you manage to find ways to laugh. You are a special couple; I'm glad to know you and have met you in person, several times. :) We said Hi to Osage last weekend while passing through, if I haven't mentioned it already. :)

LadyFi said...

I can't even begin to imagine the pain and frustration... Hope that your doctor really does make an effort! (Good thing if he does read this blog then! ;-)

DayPhoto said...

If I could help I would, oh how I would. I'm sure you would too, and of course FAR GUY would be done with it and over. Bam. Done.

Oh, by the way...I love Chance's look in your header!


Lanny said...

Chronic pain stinks.