Well let's see, I was suppose to have my thyroidectomy on May 10th but after much thought I rescheduled it. The reason why is because it has seemed like since the adrenalectomy I have felt worse and worse as time passes. Nothing I did would make it better and I was getting no help from the doctors. I finally emailed Dr. BC about my concerns with feeling like this and adding another lifelong med. He mentioned that no endocrinologist he knew prescribed Prednisone and that most he knows use Dexamethasone. Well that got me thinking along with some stuff I found online from other patients. So I called Dr. L and informed her I wanted a different steriod. I expected a huge fight but nope, they called it right in. So for the past week or so I've been on Cortef and I honestly feel soooooooo much better! It is unreal the difference and I'm so happy!
I also have been having flank pain on both sides since the adrenalectomy and it has seemed to get worse over the months. When I had the liver biopsy done in March suddenly I had shooting liver pains as well. We tested me for everything we could think of and everything came back fine. It has been quite baffling. Finally a couple weeks ago there was a discussion on the Pheo Support board that I'm on and long story short I found out that two other women who have had adrenalectomies have had the same flank pain. Finally one woman's doctor found out it was scar tissue. Of course, a lightbulb went off for me. I naturally develop extra scar tissue anyway so it makes sense that I would in this instance as well. We are now in the process of checking into it and I honestly think this is the problem.
As for the liver pain, another woman said that her doctor warned her she would have it for a few months after the liver biopsy. Of course, MY surgeon never bothered to tell me this. Gee, thanks AGAIN. *sigh* When I asked Dr BC in email he said that he had never heard of pain getting worse with the adrenalectomy and oh yeah, you could have some pain after a liver biopsy. I'm soooooo not feeling him right now. :(
My new surgery date MIGHT be on June 2nd but I'm not sure. One scheduler called last night and said we would aim for that but then another one called today and said Dr BC only does surgery on Tuesday so that couldn't be. So I'm waiting for SOMEONE to call me back. If it sticks with the 2nd though then we will go down the 1st, have the surgery the 2nd, and I might actually get to be home by that Sunday. Okay so I WILL be home by that Sunday.
This will be my last surgery with Dr BC. I have decided I just really can't handle not trusting my doctors anymore. Once we find out if Vin's contract is extended then I will be searching for a new endocrinologist and surgeon. Dr L has been passing off what I've been telling her as far as how I was feeling. It sucks knowing that had I not done my "homework" I would still be feeling like hell on the Prednisone. I'm also tired of getting " the test results came back FINE" as an answer. Dr BC is the one who told me my chances of the medullary cancer having NOT spread by now was slim to none. Or I should say he confirmed it when I said slim to none. NOW the other day on the phone he is telling me that we need to hurry up and get this surgery done because we can contain the cancer if we take out the thyroid and I will be cured.
Blogspot should have eyerolling smilies...really. I am so disgusted with him right now. I'm not stupid and I definately do not appreciate being treated like I am. I know with my high calcitonin and the amount of time that has passed that there's not much chance of being cured. I've accepted that so don't screw with me. Be straight with me. Don't lie to me. Don't shoot rainbows up my butt. And do your job!! That's all I ask from these doctors yet it's just not happening.
So I'll be getting treatment elsewhere after this. Hopefully next time I will find doctors I can rely on and trust.
What else? I'm not able to sleep much. I'm really hating that because it would be nice to get some sleep every so often. I'm afraid I'm going to need a sleep aid because it's just not getting any better no matter what I do. I was given Ambien a few months back but I just don't trust that stuff and won't use it. The "bone pain" is getting worse and has been for almost 2 months now. Ultracet doesn't touch it, Loratab doesn't touch it, Percocet didn't touch it... I'm at a loss. I plan on bringing up the idea of a TENS unit next week during my endo appointment. I just would really like to keep away from addictive pain meds for as long as I can.
I'm still holding up the best I can. It's starting to get hard some days and overwelming most others but with kids you have no choice. I'm the example that they will base how they handle the rest of their lives with this on. I have failed them in so many ways that I just can't fail them in this. It's not an option as far as I'm concerned.