Today, my surgeon says to me, “I have some good news and some bad news, which do you want first?” As someone who is impatient in general and thus ready to get this over with, I was thinking he was going to tell me that my 4D-CT showed which of my glands is acting out (good news) and that now we’ll have to schedule the surgery (“bad” news). No. He tells me that the “good” news is the 4D-CT didn’t show anything. “The bad news is that we still don’t know which gland is causing the trouble.”
Well, all right. Highly subjective terming of good and bad news there, but all right.
Then he tells me that because my calcium is only slightly elevated, because I am young—I’m coming up on my 26th birthday—and because I am what they term “asymptomatic “ (most of my symptoms are considered secondary, not primary—fatigue, excessive thirst, headaches, crankiness) he would recommend waiting. This is only the fifth or sixth thing he’s said to me to show how little experience he must have with hyperparathyroidism. Everything I have read that is of any worth has stated clearly: DO NOT WAIT.
From Parathyroid.com: “The advice to wait until your calcium goes higher makes no sense, and is advice from the 1970’s. We know much more now. Parathyroid disease will ALWAYS get worse. It will never get better on its own, and it will never stay the same.”
And why would I wait anyway? He said, “You don’t have bone pain,” – yes I do – “so we’ll just monitor you closely.” Oh, so that you can wait until I, at 26 or 27, DO develop consistent bone pain? DO lose bone density? I already feel twice my age. Would you rather wait until I feel three times my age? Because I’m not particularly comfortable waiting. I already have joint pain in my knees, wrists, and elbows. And I DO get bone pain in my shins. At 25!
He said he would wait to talk with my endocrinologist when she’s back from vacation—a couple of weeks—and they would figure out the best approach from here. “Pretty much we’ll monitor you, closely, and maybe when you meet with her at the end of July we’ll have you get a bone density test.”
I walked out of his office confident I would find a new surgeon. So I called my insurance to find out my options for getting a second opinion and—none. The surgeons that I found in Boston who have significantly more experience in this are not contracted through my insurance company. (I’m a poor grad student—I get free health care, and the options are terrible.) The guy on the phone couldn’t find anyone in the area who is contracted and experienced in head and neck surgery, endocrine surgery, thyroid surgery. In the end he gave me the names of two more general surgeons, for what use I don’t know.
Temporary though it may be, I feel like I’m at a stalemate.
On the bright side, I’d been putting off visiting my family in Ireland due to all of the appointments, possible surgery, and possible recovery time. This morning, though, I looked up tickets. I think I’ll buy them.