I've wanted to post for a while but every time I started it wouldn't work. Mostly because I felt like I couldn't say,"I have a tumor that makes me sick" without being able to say where it was. Five months and lots of tests later, I have results and I'm in the mood for sharing.
The facts are:
-I was diagnosed with Cushing's syndrome in October
-At the recommendation of my endocrinologist in Oklahoma City I sought an out of state second opinion and differential diagnosis. Cushing's is caused by a misbehaving benign tumor that makes a hormonal ruckus. The trick is finding where it is located.
-The final test was conducted yesterday at Mass General here in Boston.
-My doctor called last evening with the results that weren't supposed to be in until Tuesday.
-"ACTH was high which is a good indicator we are looking at a pituitary tumor.
-Translation: my official diagnosis is ACTH-dependent Cushing's Disease
-(happy happy)
This is good news because had it gone the other way I would have had ACTH-independent ectopic Cushing's syndrome which meant going back to Oklahoma City, taking icky meds and having periodic scans for the next few years until something showed up. (Meh) Eric and I like the brain surgery option better, don't you? I meet with a pretty stellar neurosurgeon on Friday to discuss scheduling a time to poke up inside my nose. Boston is nice. :)
More to come!
Signs and Symptoms
Differential Diagnosis
Bilateral Inferior Sinus Sampling (02.17.12)
Sheesh, Sarah! Brain surgery sounds like a walk in the park. But seriously, I hope that things go well and you start feeling better sooner than later.
ReplyDeleteSarah! You're totally going to be able to beat out everyone's surgery horror stories. Oh- you're complaining able having your appendix out? Yea, I had a scope up in my brain, thank you!
ReplyDeleteI'm happy you guys are in Boston around the best of the best! I'm happy they have a solid idea where your tumor is- hopefully they'll be able to get you all fixed up soon.
Prayers your way!!