Finally Diagnosed w/Cushings Disease

Apr 14, 2010

Well, I finally got my diagnosis!
It has been PROVEN that I do have this incredibly RARE disease... Cushings Disease.
AKA: Cushings Syndrome.

Since my last blog, I have:

Had a lot of medical tests...
Blood work... blood work.... blood work... 
Inferior Petrosal Sinus Sampling... (what a scary, scary procedure)
MRI's and Cat Scans...

Once I was diagnosed officially, I felt I needed to quickly take care of my hernia prior to my 'brain surgery'!

So, I have had:
Umbillical Hernia Repair Surgery (3 weeks ago)....
And then, I had:
Transphenoidal (spelled correctly?) Pituitary Surgery to remove a benign tumor (exactly 1 week ago today)...

The Pituitary Surgery was unsuccessful...
My 8am Serum Cortisol Level was 24 the morning after surgery, then a 22 the next morning.
To be considered 'cured' your level needs to be under 5, and really, you hope for a 0!
 
I am so devestated...

So,
My Neurosurgeon, Dr. Kristen Riley at UAB, Birmingham, AL. wants to do Gamma Knife Radiosurgery...
another scary procedure...
OR
Another path I could go is Bilateral Adrenalectomy (spelled correctly?)...

The next few months will be full of questions and I am certain more testing now that my Pituitary has almost been totally removed... My hormones may be out of whack now too! UGGGGHHHH...

Now that I have my concrete diagnosis...
I know that my Gastric Bypass was unnecessary medically,
BUT, I needed RNY for my mental health.
Losing 50 lbs has made a huge difference in how I feel...physically and mentally!!!!

If you are reading this and you have:
a 'hard, pregnant-looking belly' (trunkal obesity)
if you have had a rapid weight gain with no excess food intake or major lifestyle changes
if you bruise easily
if your cuts and sores take forever to heal
if you have unwanted hair on your face and other unwanted areas
if you suffer from depression
a 'buffalo hump' on the back of your neck and shoulders
a red, round face (moon face)
extreme fatigue
achy joints
muscle weakness (difficulty doing stairs or rising from seated position)
brittle bones (fracture easily, bone density low, osteoarthritis)
if your Blood Pressure is rising
if your Blood Sugar is rising (pre-diabetic)
if your skin is thin and dry (like an elderly person)
if you develop rashes/skin tags/moles, etc
if the texture of your hair changes (mine was straight and shiny, but, NOW it is wiry, coarse and wavy)

The symptoms I do not have, but are very common:
red stretch marks on the belly and breast area
irregular periods
acne

So, if these symptoms describe you ... Go directly to an Endocrinologist!
Have your Serum Cortisol and ACTH levels drawn because...

YOU may be a CUSHIE too!

I wouldn't wish this difficult to diagnose disease on anyone!
BUT,
I am certain there are a few Cushie's out there that are unaware that they have this...

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