As if...

It's as if I never had surgery. That's what today's visit with the endocrinologist told me. She got the medical reports from all my physicians and the pathology lab who conducted my biopsy and it's conclusive that they didn't remove the tumor at all. Gee, I wonder if that's why I still have Cushing's?!

Anyway, apparently you develop a skin lesion over the tumor and surgeons often confuse that with the real tumor and only remove the lesion. This explains why recovery was horrible and why I have had even more problems since surgery. You don’t have any idea how painful it is to hear that you had brain surgery and they didn’t get it so you will need another. Not only that, but in order to prove the need for surgery; we have to do the entire process over again as well as a sinus sampling which is highly risky and invasive. More so than the original surgery.

Oh, a quickie on the sinus sampling….they go up through your legs with a wire/needle to your pituitary and take samples of your tissues and blood along the way to identify where the tumor starts and ends since it is often invisible. We do know my tumor had grown in the 6 months we knew about it so we are working fast to resolve the issue!

I feel sick. I wanted to trust my doc when he came out and said that it’s over and I am going to get better very soon. He said he got it. Everyone wonders how I could have been such an advocate for doctors and now I do not trust them as far as I can throw ‘em. I guess it pays to be your own advocate and doctor…to push the fact you know you aren’t healthy. And to think the other endo didn’t want to see me for two more weeks on top of the month and a half that have passed since I told her I was feeling very ill again.

Anyway, I also got the diagnosis of diabetes today and was put on medication. I will also need my gallbladder removed shortly after a successful pituitary surgery since a doctor will only cut me open now in an emergency.

So now we are trying to get me into the guy who is the “godfather” of pituitary surgery for the sinus sampling and surgery at Mass. General. This also means I have to fight with insurance and to get an appointment faster than the million other people who want to see this guy. Insanity! Anyone with connections in Boston, please let me know. We’ll need a roof over our heads for a few days and probably some other type of support while we are there…providing I can get in. Our second choice is Mt. Sinai in NYC.

So the next round of tests start tomorrow and then we move very quickly from there other than getting an appointment with the surgeon. Keep your fingers crossed. I know I’ll beat this thing but it’s just taking a really long time.

Ok, off to try and relax…