Why so much trouble?

So I went back to the doctor to get my test results for the "baseline numbers" he wanted to compare pre-op and post-op. I had done a 24 UFC and a dexamethazone suppression test. I was worried that both would be normal and they would somehow dismiss everything else and send me back to the drawing board. But my family assured me that the doctor had confirmed the diagnosis, said I would definitely need surgery, and this was just a last step prior to going to the neurosurgeon, just to get him more numbers. Well, it wasn't quite so easy, of course.

I was surprised that my 24 hour UFC test came back high. The normal range is 4-50, my number was 69.7. I thought I was feeling kind of better, so I might have normal numbers. I guess my last 24 hour UFC was actually done wrong though, so that's probably why it has been my only test to come back disproving Cushing's...until this: I supressed on the Dex test. With normal cortisol production, dexamethazone makes cortisol supress, or drop down to a very very low amount. In Cushing's, according to my doctor, cortisol doesn't supress. But mine did, to below 1. My doctor said that's very unlike Cushing's, and the neurosurgeons may now want to "wait a while" to perform surgery. What? Wait a while? He didn't say they wouldn't want to perform surgery, or that I was no longer diagnosed with Cushing's. No, he actually said that it looks like I DO have Cushing's, but that they may want it to get WORSE before they go in and do something about it. He in fact said that because I have Cushing's, and because they found a tumor, they would most definitely need to go take it out at some point. And he also pointed out that Cushing's increases morbidity rates...it can be fatal eventually...so I would definitely need to get surgery. But he said that I may need to wait for it to get worse!!! I am blown away. How can you tell someone that they have a disease, that has a possible cure, but that they need to let it wreak more terrible havoc on their body. How can you say that I should wait until I in fact DO get all of the horrible symptoms of Cushing's before I can fix it? What's the point of modern medicine here? There's no point in "finding things early" or being proactive. I'm so confused, and upset. I had actually accepted the idea of brain surgery. I was looking forward to the possibility of getting better with these symptoms that I AM experiencing. I don't want to just get larger and larger, and then get purple stretch marks, and then a buffalo hump on my back. From what I've read, a lot of people look back after their Cushing's diagnosis and realize that it started long, long before. They can think of when they started putting on the weight, when they first saw those stretch marks. Then came the high blood pressure, diabetes, osteoporosis... But they had symptoms before all of that, too. They had the terrible fatigue, exhaustion, muscle weakness, pain, and difficulties with concentration early on. What if we caught mine before the other physical problems start. Can't we stop it now??

I've read that too many doctors rely on that dex test for the Cushing's diagnosis. At least my doctor still says I have Cushing's...so I'm not being dismissed outright. But I called into the number 1 neurosurgeon in AZ to see about getting an appointment, and the appointment scheduler asked if my vision field has been affected. I said I didn't think so, it's just getting blurrier. But I still have peripheral vision if that's what she meant. Well, she said that if I didn't have loss of visual field, I probably wouldn't get in to see Dr. W for a first consult until the end of February at the earliest, if at all. He wants to look at all of my labs, office notes, the MRI report and films, and I have to get a visual field test done and sent to his office before he even decides if he wants to see me. Wow! Because I'm not losing my vision (which can be irreversible once started), then I have to wait...that seems so weird. I know that those who are going blind should obviously get in there and get things going, but I don't think proactiveness should be punished.

I put in a call to Mayo Clinic and they said I could probably get in to talk to a neurosurgeon within a week. So we'll see how that goes. I just want to talk to someone, get a feel for a timeline or something. My endocrinologist told me at my last visit I shouldn't sit on this. Don't wait 6 months before getting it taken care of...well, it looks like that wouldn't be my fault. Oy!

Lupron is still the devil. :) I'm just super mean nowadays. Sometimes I'm good. Sometimes I'm funny, and laugh, and feel like the world is actually just as it should be. And then I'll just flip and somehow decide that everyone, and everything, is working together to make my life more difficult. I haven't decided if I'm going to continue taking it. My endo pain is getting better. I've been exercising more and I feel like I can breathe without all kinds of pain under my rib cage and sternum. It comes and goes. I still have pain when I pee the first time of the day, it radiates up my right side. Actually today that pain wasn't there, and then about 45 minutes into getting ready for work I started getting some bad crampy pain all over my lower abdomen. I went to work and it just got worse as I walked up the two flights of stairs to my desk. I don't know what it is or why, but those two flights of stairs absolutely kill me. Every morning I sit at my desk huffing and puffing after those two damn flights of stairs. And I'll have you know, they aren't even two consecutive flights. No no, one is in the parking garage, and the other is in the office. So I even have time to cool down in between! Ha! Pathetic. But this morning was hard because it hurt more than usual on top of the ridiculous exertion. I guess I need to get back in to talk to my gyn about the Lupron. I wonder if she'll know what Lupron does with the whole Cushing's thing. No one else seems to know. I haven't met with her since a month before my first injection. That's no good.

Alright, if you've made it this far in my post, congratulations...and thank you! Hopefully tomorrow will be a good day. Maybe I'll get a call from the Mayo Clinic to set up an appointment, now that would be a good day :)