Who's Got the Big Picture and How Many Zebras are There?

We're back from UW, and I'm beat and have no idea if I have it in me to make this a fun and pithy entry. But we'll give it a go.

We made the long drive, and I realized for the 279th time that I'm a country bumpkin. I did not feel at all at home in the big, impersonal medical hugeness around me. We waited for an hour in the waiting room, but eventually were called back.

After the nurse checked us in, a guy poked his head in and said in Andy's general direction, "Let me just look at some paperwork then I'll be right with you, sir." Now, two things I found a little disconcerting about this: 1) Andy wasn't the patient. I was. And I would think that a cursory glance at a chart would give one that general impression upon entering our room and 2) This wasn't the surgeon I thought I was going to see. We all know I do my homework and I'd looked the guy up. My surgeon was supposed to have unique teeth and rather--could only really be pulled off by somebody super smart--shocking hair. This kid looked like one of the smaller bit characters from Grey's anatomy (there ya go, Amy!). So I sat there and ruminated upon this and postulated that perhaps this gentleman was an intern or a resident and that brought my blood pressure down slightly. On the off chance he wasn't going to come in and tell me he was an intern or resident, I rehearsed a little speech about driving 2 hours, and waiting 1 hour, and doing my homework and demanding to see the guy with the smart-shocked hair.

The resident came back in and addressed me this time and explained that he was indeed a resident. And since he was a little Grey's Anatomyesque I think we shall name him. I'll call him McNervous since he seemed quite tentative about quizzing and examining me and also was rather embarassed to report later that the CBT discovery had been made during a routine "OBum...GYN check-up" for the pregnancy. He assured me that the surgeon that I expected would be in shortly after he asked me a bunch of questions and gave me a preliminary exam. So he did all that. He got my MRI and ultrasound reports and my lab test results all together and popped in the MRI disc. And while we're at this point can I just ask--why do the chairs in ENT's offices have to be so freaky? I once proposed to Dr. Lee, the ENT who took care of me frequently when I was a little girl, and I don't remember him having a chair that freaky, but the docs I've seen out here--their chairs are scary.. They're very cushiony which is good, and have arms in them, but they make me feel claustrophobic. I did get to go on a few short little rides up and down in the thing though.

Finally the expected surgeon arrived with McNervous and an intern for good measure and showed me my MRI and talked about Carotid Body Paragangliomas in general and about the procedure in specific. I really DID think I'd stepped into Grey's at that point as McNervous had to report all the details of my case to the super-smart surgeon while Intern Guy took copious notes . He fielded all my questions which was good, and I did have tons of them, of course. I was happy to find that I could even stymie this particular world-class surgeon with a question. He was set a little off-balance when I asked his opinion about a trip to NIH. Yes, the Pathological Googling Question Fiend strikes again!

(Also, parenthetically I gotta say I loved the intern even though he said hardly anything. The one thing he DID say to me was, "Is the baby a boy or a girl?" and though I was too shaken to really show him that I appreciated that little bit of humanity when I answered, I love that he asked and that he warmly wished us luck with everything when we left).

So... Did I get the answers I wanted? Was this guy 'the one?' (I feel kind of like I'm back into a search along the lines of the one for the man with the yellow leg).

The short answer is this: I was impressed, but disappointed. While it was incredibly obvious immediately that this doctor was highly experienced, he didn't have the magic 'big picture' that I've been looking for. He *is* incredibly experienced. He told me he's done somewhere between 75-100 of these procedures. That's certainly a much higher and more reassuring number than the '2 and a few during fellowship' that surgeon #1 had under his belt. He knows the procedure frontwards and backwards and is anticipating all the potential variables. He assured me he would be working in tandem with a vascular surgeon which was one of my biggest questions about the procedure. In short, he's more than got the skills to do this procedure.

BUT (because everybody's got a big BUT), when I asked my questions about the possibility of a genetic mutation at the root of this problem given my age and the location of the tumor he totally shrugged it off. He indicated he doesn't do follow-up because he doesn't find it necessary. He believes these tumors to be almost always sporadic and saw absolutely no reason to investigate further to rule out the possibility that it's not. His big picture seems to mainly involve his scalpel and my discharge papers.

The doctor at NIH indicated that given the variables involved here (age, location, etc) that there was a 40-50% chance that I carried the SDH mutation. Which begs the question--Is NIH doc stacking the numbers because it's his specialty and that skews his perspective.... or is the risk for this genetic mutation really as low as super surgeon we saw today indicated?

Even more... If we decide to go with the extremely capable surgeon we saw today, would I be satisfied, or will I always wonder and worry that there is more to the story?

So at this point it looks like our choices are: 1) To go to NIH. To bite the bullet and deal with the logistical craziness and the extra cost of travel cross-country several times to be sure that we have THE BIGGEST OF BIG PICTURES. Or to 2) Go with super-capable guy here... and try to manage the big picture myself by being a good self-advocate.

I wonder also about getting an endocrinologist or oncologist on the team--an oncologist simply because they deal with tumors and follow ups and that sort of thing and because of the low possibility of malignancy, an endocrinologist because this is a tumor of the endocrine system. I want somebody smarter than me to have the big picture and to 'have my back' so to speak for the long term game, but I have no idea how to find that person or if TriCare will even LET me try to find that person.

In addition, I fear that I really have over-researched... That I've made myself wonder about all of these possibilities that the doctors I have seen so far keep assuring me amount to chasing zebras. (And again I say--when you've caught one zebra in your living room, you can't help but wonder if the rest of the herd has come to visit!). On the other hand, I also don't want to look back in 5 or 7 years and find that I'm dealing with metastatic disease or a recurrence or a new para on some other part of my body and think, "Boy I wish I'd pushed harder to find out more when I had that thing removed," or even, "If only I'd known _____ then."

So I did get more information. I do know that I have a more than capable surgeon in this part of the world.... But I'm still left at a quandry as to what to do about 'The Big Picture.'

At least I got to hang out with my own 'McCast' for a while.