Friday, April 21, 2006

The last specialist standing...

So, when last I posted, we still had one more specialist to go see.

One last appointment, one last time to drag those MRI films to yet another doctor's office. One last time to fill out the endless stack of paperwork. One last time to sit perched on an uncomfortable chair, in a bland room, while Twinks squirmed on a hard exam table.

I realize that in the future, there will inevitably be another new doctor to go see. That one of us - whether it is Twinks, The Wrench, or myself - will need to see a new physician. There will be the paperwork then, the unhappy dance that all new patients do with the new doctor, trying to find out if you "fit" into that practice, if that office is going to be a comfortable place for you to spend such important hours of your life. But on this day, just a bit past one week ago, we already had a working diagnosis; the New Rheumatologist had said "fibromyalgia", and the combination of Medication A and Medication B had already begun to work. Our sweet, shining girl was coming back to us... hour by hour, day by day.

So, it was a bit of curiosity that we were there to begin with. However, The Big Cheese Doctor down at Hospital City had asked us specifically to see the New Neurologist, and I figured it couldn't hurt to go ahead and make what would essentially be a "courtesy call", just to set Big Cheese Doctor's mind at ease.

We wandered around the building, searching for an office that didn't exist (because I had remembered the office number of the New Rheumatologist, who is in a building clear across the Greater Metro, and NOT the New Neurologist. Stress. Kills. Brain. Cells.) and so we wound up being just a few minutes late. No harm done, however, because apparently the New Neurologist was running late anyway. We went through the usual routine (co-pay, clipboard with more forms, passing the MRI films through the window) and sat down in a clever little waiting room that had been decorated like it was a jungle. All the way down to little chairs carved to look like animals, and elaborate murals on the walls.

There was a little less paperwork than normal this time; mostly because when I had called to make the appointment, New Neurologist's "Patient Manager" had interviewed me for nearly 30 minutes on the phone. All of that information was here, neatly typed up, and I only had to verify this, which included a list of all of the doctors we had seen. This doctor also had a policy of reviewing the case prior to accepting an appointment for a patient, although the Patient Manager explained that with the referral coming straight from The Big Cheese at Hospital City, that was a mere formality.

I started to fill out the remaining paperwork, when a Nurse Person opened the door, and motioned us back. Unlike the Wee Cheerful Girl at the New Rheumatologist, the Nurse Person was almost entirely devoid of personality. Her scrubs were animal-themed, which matched the rooms that we passed as we went down the hallway. Her hair was caught back in a cute little "scrunchy", and she was pretty enough, but she moved woodenly, as though on auto-pilot. Nurse Person showed us into another jungle-themed room; it was small, but it had a big wiggly yellow snake inlaid into the bright green linoleum floor, a huge silhouette of a tree fastened to one wall that doubled as a yardstick to measure the height of the patients, and even a little bamboo and grass valance over the window that completed the whole decorating scheme. Everything was clean, and bright, and as I finished the paperwork, Twinks and I chatted about how the artist who created the snake in the linoleum could have made the inlay fit so perfectly.

New Neurologist bounded into the room like a giant friendly puppy, with a Resident trailing him more slowly. We shake hands all around, and just as I sense we are about to begin... Nurse Person taps on the doorframe; Resident has phone call. Resident leaves, mumbling apologies to New Neurologist.

And then a funny thing happened. New Neurologist sits on the little swivel stool, twirls all the way around, and says "Boy! Am I glad HE'S gone! Now we can have some fun!"

Twinks, of course, immediately starts laughing; between the bad Groucho Marx imitation and the fact that dour-faced Resident is gone, the atmosphere in the room is light and easy. The doctor turns toward me, and in one of the few serious moments we will have during the entire visit, asks me why exactly we are there? I explain about The Big Cheese, and The New Rheumatologist, and how we have a diagnosis, but we want to make sure that nothing is overlooked. He nods, winks, and then he swings back toward Twinks, who is sitting idly on the exam table, swinging her legs. He catches her feet, knocks on the braces that run up the back of her legs, and starts with the jokes.

"Knock Knock"
Who's there?
Lettuce who?
"Lettuce get going, here kid! Get those shoes and braces off!"

For the next 30 minutes, he joked, laughed and smiled as he did the standard neurological exam that we were already familiar with. He paused only once or twice to ask me questions; most of the time he worked directly with Twinks, all of the time with a sense of humor that was razor-sharp and lightning-fast. He threw puns at Twinks rapid-fire, and she caught them all, and zinged him with a few of her own; I only wish I had a transcript of their exchange! He would throw back his head and laugh - full, real laughter - whenever she would get one over on him.

Finally he motioned to Twinks to scoot over on the exam table. He pulled up next to her, and began to draw on the paper that covers the table.

"This" he said, motioning towards a straight line he had drawn, "this is like your pain. It started waaaaaaay over here, a long time ago when you were born, right?" She nodded. "OK", he said. "So, here's the thing. Your whole life, the pain was pretty much like this" and here he pointed to the line that was parallel to the edge of the table, "and then, a couple of years ago, it started to be like this" and here he spiked the end of the line upwards, until it went nearly off the opposite side of the paper. "Am I RIGHT?" he said. Twinks nodded, not sure where he was going with the diagram. He looked up at Twinks "Actually," he said "I'm on your LEFT! Your LEFT! Get it?" more laughter, then "So, here" he pointed to the place where the line begins to curve sharply upwards "is where the fibromyalgia began. And here" he pointed to Twinks head "is where we will conquer it".

He told her then that neurologically speaking, as far as he could tell (and he pointed out to her that he was, after all, an alleged expert on such things) there was nothing wrong with her. He said that there was nothing to see on the MRI, except "bones and junk like that" but nothing "bad, icky or gross!" Then, he told her that because she had been in pain so long, and because her pain had gotten worse with the fibromyalgia, her brain had forgotten what it felt like to not be in pain. In other words, until we had started Medication A and Medication B, her central nervous system was full-out overloaded with pain. It would have been almost impossible for her to stop the pain any other way, without some kind of help, like medication.

Then, there was a moment that completely surprised me. He turned swiftly to me, and said sotto voice "She's not depressed, you know. She was in pain, she wasn't depressed." His voice became louder, and he said "Have you ever seen a marathon runner? They always look terrible, you know! Like they are about to CROAK! The way they can run those marathons is because their brains produce all of these really great chemicals that help stop the pain, and help keep them going." He paused, then "You just need to convince your brain to get back into the endorphin and serotonin business!"

He explained (in between the giggles and a few more bad jokes) that while he can't do anything to make the pain go completely away, that Twinks herself could "practice" her pain away. That by using simple visualization techniques, she could help her brain get ready for success by mentally rehearsing having a whole day without pain. He also told her that she was going to have to be like an athlete, or an actor, who uses visualization to create a "winning performance". The difference is that for her, winning is making it through the day without pain.

After a few more jokes (and a really, really bad imitation of Popeye the Sailor Man) he stood up. He asked Twinks if her mother always laughed this much when she went to the doctor's office. Twinks merrily replied "Oh no! Only here!" which caused New Neurologist to laugh heartily again. He told us that he had really enjoyed meeting us, and that he was very glad to see that we had both retained our sense of humor through everything. I replied that it was either find the laughter or lose our minds, so we did both.

He offered his hand to me then, as if to shake hands again, then withdrew it just as I reached out. He bobbed his head instead in an awkward bow, then as soon as I withdrew my hand, he stuck his out again. We repeated the silliness once more, to the increasing laughter of all three of us. "Go away!" he cried, passing his hand over his forehead in mock drama "Go away! I have no need of you further!"

Then, he was gone, out the door. The Resident never came back; it was just as well. We saw him as we were leaving, in the hallway... he looked dazed and confused. Poor kid.


If laughter really is the best medicine, the New Neurologist is the best doctor in the world.


So, now we are done, at least for a couple of weeks, with the doctors.

We'll have to go back to the Pediatrician and the New Rheumatologist for follow-up visits, but we don't need the New Neurologist, or Physical Therapy, or most notably, The Quack.

We'll be moving forward again. Twinks made it through two full days at school this week; a huge triumph, considering that she hadn't gone to school full-time since last October, and hadn't been to school at all since January. Already the pace and tempo of our lives have changed; The Wrench and I are beginning to look like humans again, now that we are all getting some sleep.

We did it. We made it through. We made it to the last specialist, and the prize is that our Twinkie is getting her life back.


Kelly said...

OH, he sounds wonderful! What a rare breed! You were very fortunate to get in with such a personable doctor---so many are so "brainy", that it looks like they left their personality in med school!

Johnny C. said...

I'm glad to hear that things are getting better!

I understand the head game on another level. I have bad anxiety, but i've learned to control it for the most part.

It's tough, but it can be done.

I'm happy for you guys!

Chuck said...

Awesome news, T! I'm SO glad you guys found some answers and some nice specialists. According to one of my friends who is a nurse, finding a specialist with a personality is very rare, so I'd say you're in good hands.

Garrett said...

Don't suppose you could sic him on the quack, could you? He'd never know what hit him. :-)

Suldog said...

Well, the news keeps getting generally better, eh? Good for all of you. You deserve a break.

Stu said...

So dig it, if the new doc makes Twinkie The Kid feel better, then maybe combining the visualisations with a daily dose of Bill Cosby records, or Tom Lehrer records, maybe that'll speed things along.

Hey, Thimbelle, way to stay focused on your kid! You're a Mom and a Half, and you do yourself proud. Keep goin', the finish line is in sight, the Twinks will be skateboarding in another year.