Good news and Bad...

Hello everyone! Here's another update on some news I received yesterday about the process of proceeding with Pituitary surgery #2. Apparently, a lot got lost in translation between me and the doctors at UCA because it turns out that my surgery has NOT been approved because our insurance providers will not cover the cost of the surgery at UVA (which is not covered by them). That is the bad news. 

The good news is that I will likely be having the surgery at Johns Hopkins again which I'm thrilled about because I love my team of neurosurgeons (Dr. Jallo and Dr. Quinones). Johns Hopkins is one of THE BEST hospitals in the world, so I'm not worried about not having my surgery at UVA at all.

As of now, a definitive surgery date hasn't been established, but we are working on getting it scheduled ASAP.

I also have another follow-up appointment with Dr. Quinones coming up on November 4th (ELECTION DAY!!), so we will see how that goes.

Keep me in your prayers!

Chanelle

10/25: National Tumors Suck Day!

I'm not quite sure if this it official, but I recently got a message from a friend of Facebook that 10/25/08 is National Tumors Suck Day!

Now, officially recognized or not, I will definitely be celebrating this special day and taking time to reflect on the suckiness of tumors.

To everyone who has had one or has one now, just remember that a tumor can't (and shouldn't) stop you from trying to achieve your bets health and pursue happiness in your life. FIGHT THAT BAD BOY!

And to all of you who don't have a tumor, remember to also cherish life and your health because it can all change so rapidly!

10/25/08 NATIONAL TUMORS SUCK DAY!!! CELEBRATE WITH ME! 

What is Cushing's Disease?

Here's the answer to the million dollar question on everyone's mind; WHAT EXCTLY IS CUSHING'S DISEASE?? Click here to learn more!

The image to the left show common side effects and symptoms of Cushing's and how it can change your body. 

Where can people with Cushing's find help and get support?

As we all know, the internet is an AMAZING resource for finding ways to reach out to each other. One of the most prominent and popular support groups for "Cushies" (sufferers of Cushing's disease) is the Cushing's Support & Research Foundation. 

Want to know even more about Cushing's and see how real people have overcome this devastating disease? Than here's everything you wanted to know about Cushing's in a PowerPoint Presentation! 

Pituitary 101: Getting to know the "Master Gland"

Ever wonder what the Pituitary Gland is?

Get a quick definition of the "Master Gland" here!

Did you know...

That there's a whole association dedicated solely to the Pituitary Gland and all related disorders? Check out the Pituitary Network Association today!

Why is the Pituitary so important?

The Pituitary gland sends signals to the thyroid gland, adrenal glands, ovaries and testes, directing them to produce thyroid hormone, cortisol, estrogen, testosterone, and many more. These hormones have dramatic effects on metabolism, blood pressure, sexuality, reproduction, and other vital body functions. In addition, the pituitary gland produces growth hormone for normal development of height and prolactin for milk production.

The pituitary is the control center for the endocrine system, which controls all of the hormones produced in the body.

Pituitary Surgery & Recovery

What does a Pituitary tumor look like?

The image to the left shows what the Pituitary gland looks like when compressed by a tumor. Even the smallest of tumors can wreak havoc on your hormone levels and the rest of the endocrine system. 

How exactly do you operate on the Pituitary gland?

The most common approach to operating on the Pituitary gland is through transsphenoidal (trans-fen-OID-ul) surgery through the transsphenoidal sinus behind the nostrils. The image below shows how neurosurgeons access the Pituitary gland. Learn more about transsphenoidal surgery here!

How long is recovery from surgery and afterwards, are you cured?

Recovery time varies from patient to patient and directly correlates with how long you've had Cushing's Disease. If successful, the proper response to removal of the tumor is called "steroid withdrawal" in which the body goes into a deficit of the hormone Cortisol, and will have to be replaced (with synthetic hormones) for a period of time until the Pituitary regains normal function. Even the best of neurosurgeons are not always successful with the first Pituitary surgery (the success to failure ratio is about 60%:40%). Since it only takes a single cell for the tumor to return, if the second Pituitary surgery fails, the next option is often the removal of the adrenal glands. 

The patient may not necessarily be "cured" of the disease due to the fact that they may have to take replacement hormones for the rest of their lives after surgery, but it is possible for the Pituitary gland to regain normal function usually (and hopefully) after a year to 18 months of surgery.  

Did You Know... Facts about Cushing's Disease

Here are some facts you may not have known about Cushing's Disease, the Pituitary Gland and the Human Brain in general. Make sure to check this list often because even I learn a new thing about this disease every day!

• 1 in 5 people have a Pituitary Tumor.
• Cushing's Disease affects about 10-15 people out of ONE MILLION each year.
• Cushing's affects women 5 times more than men.
• The common age range of the affected is 20-50 years old. 
• Cushing's Disease can present itself as florid (with symptoms appearing once and continuing until cured) or cyclical (with symptoms appearing for a period of time, disappearing and returning again).
• Cushing's mainly affects the regulation of the hormone Cortisol in your bloodstream; this in turn can cause stress on your adrenal glands. 
• Cushing's Disease is presented by a small, (usually) benign tumor on the Pituitary gland (70%; benign) while Cushing's Syndrome normally has to do with a hormone imbalance due to a tumor on the adrenal glands (20%; benign), an overproduction of steroid hormones in the body or another ectopic tumor; a tumor located somewhere other than the Pituitary or adrenals (10%; malignant). 
• The Pituitary Gland is often called the "Master Gland" because it regulates the release of all the major hormones in your body. 
• Cushing's Disease (and Cushing's syndrome) is often mistaken for: 
  • Obesity
  • PCOS (polycystic ovarian syndrome)
  • Diabetes Mellitus
  • Hypothyroidism
  • Fibromyalgia 
  • Overuse of certain Steroid Hormones
• Symptoms of Cushing's are: 
  • Facial redness
  • Rounding of the face (moon face)
  • Unexplained weight gain around belly
  • Buffalo hump, or hump on back of neck
  • Pink or purple stretch marks
  • Thicker or more visible body and facial hair (Hirtruism)
  • Acne
  • Muscle weakness
  • Extreme fatigue
  • Thin and fragile skin that bruises easily
  • Depression, anxiety and irritability
  • Slow healing of cuts, insect bites and infections
  • Bone thinning and Osteoporosis
  • Recurrent infections
  • Sleep disturbances
  • High blood pressure
  • Diabetes Mellitus
  • Irregular or absent menstrual periods in females
• If gone untreated, the long-term complications of Cushing's Disease are:
  • Bone loss (osteoporosis)
  • High blood pressure (hypertension) and possible heart attack
  • Kidney stones
  • Diabetes
  • Unusual infections
  • Infertility
• Horses and dogs can also suffer from Cushing's Syndrome.
  
• As of now, the only known treatments for Cushing's (caused by a pituitary adenoma) are transsphenoidal surgery and GammaKnife radiation therapy, but newer clinical trials are attempting to produce an oral drug that could control this disease. 

The Big, Long Tumor Story

Here is a copy of the note I posted on August 15, 2008; a little over a month before the one year anniversary of my first Pituitary surgery. It's a brief synopsis of my struggle with Cushing's Disease. Little did I know that I would be going down that road to surgery again just a few months later...

Read and enjoy (it's a truly captivating tale!)

Facebook Note (8/15/08):

Wow. Here it is; the middle of August and I'm almost 11 months post-op
It's crazy to think I've been through so much and I've realized from talking to some people that even now...almost a year later, a lot of people still don't know what happened to me and how I got to where I am today!

I guess it's because I strongly believe in not burdening people with my life drama because Lord knows we all have enough of our personal stuff to be managing without worrying about other people's, but I guess it's only fair to put it out there: what happened, how it happened and how I'm doing today.

So if you've heard it before you can just leave now and save yourself all the emotion :)
(or you can always relive it again)
And if you haven't heard it...enjoy I guess...

So here it goes--from the top:

So, I've always been a happy, active, healthy girl with a lot going for me. Lots of friends, smart, funny, nice, creative and talented (I'd like to think) and just a pretty good kid. Up until my Junior year of high school, everything was smoooth sailing. (The worst of my health problems being exercise/smoke-induced asthma).

I was into everything: dance, cheer at MVHS, band and STEP team at North Stafford and a bunch of other school things. Singing, acting, writing and piano: just your typical OVERLY-INVOLVED type-A chick. 
then Junior year rolls around and (me thinking I would be ready for anything!) knocks me flat on my butt. It's already hard enough that Junior year is supposed to be the toughest, with the focus being on grades and college and involvement, but then factor in the given high school crap and just being A GIRL PERIOD...it was already overwhelming...then by the end of that year...things started to fall apart fast.

A brief synopsis of November through June of my Junior year:
November- my paternal grandmother dies
December- I oddly start putting on weight and feeling sluggish/depressed
January- I'm freaking out about SIMPLE things that come naturally to me: i.e. ENGLISH and SOL'S! I lose my ability to write poetry and speak clearly and dance and sing...I'm dying at this point!
February- Things continue to go downhill; getting fatter, tireder, weird WEIRD things happening to my body...ANTIDEPRESSANTS!
March-my maternal grandmother AND my great aunt die (funeral on the same day) then my cousins (one that was bipolar and crazy) move into our home...DRAMA ENSUES. She attacks me and we have to kick her out of the house! But I digress...
April- A pastor that I loved dearly dies..I flip out of course...and my health and weird symptoms are getting worse. I'm in the doctor's office every day, am crying myself to sleep every night and I'm SURE I've gone insane (and many of the doctors that I've seen don't make me feel any different). 
May-June- I'm just trying to hold it together as school ends and not go completely nuts!

At this point, my crazy bipolar cousin is gone (but my other boy cousin is still here), my mom's an emotional wreck and I'm as medically stable as Brittany Spears. Things are BAD.

But then...the moment that truly changes my life comes. And I honestly believe this is what saved me.
I was flipping through channels one day and a show called Mystery Diagnosis comes on television. A woman with the SAME EXACT SYMPTOMS as me showed up on the screen and I KNEW that was it. It was rare and strange, but CUSHING'S DISEASE is what I knew I had.

A small benign tumor on the pituitary gland that makes your body secrete massive amounts of Cortisol (the stress hormone) which in turn MANGLES your body and mind in ways unimaginable. It's rare; effecting 5 out of a million people in the age range of 20-50 (and I was just 16 when it hit me). Most doctors won't see a single case of this in their entire career. Lucky me.

Well...to keep things short and sweet, the next few months were filled with fear, preparation, appointments and relief (on my part) that I wasn't insane and my intuition COULD be trusted...but by then the damage to my mind and especially my body had been done.

September 20, 2007
BRAIN SURGERY
World-Renowned Neurosurgeons Dr. Alfredo Quinones and Dr. Goerge Jallo drill into my right nostril with special cameras and lasers and remove my pituitary microadenoma.
That was the easy part.

All that was required of me was to fall asleep, wake up (hopefully) and be able to move all ten fingers and toes. Check, check and double check...but the tough part was recovery.

Indeed recovery was a process: I had to stay 6 days after my surgery in the hospital, I developed Diabetes Insipidus for a few months, was on many medications and even did my first semester of school home-bound. Then there was the emotional part of "why me" and "why aren't I recovering fast enough" which is whoooole nother story!

But everything that I've been through has led me to so many places and to so many people with so many stories that I never would have heard. I was put into a medical journal, offered internships with doctors who were impressed with my diagnosing skills and met some of the most famous surgeons in the world.

I'd take that tumor again every day had I known it would have led me here.

But most importantly I saw the power of prayer, family and friendship and I learned valuable life lessons:
-NO ONE is invincible
-Life is fragile and precious
-Don't take anything for granted
-Follow your intuition
-Never give up
(And all those other little virtues that people seem to forget about over time.)
It even pulled me closer to people that have truly touched my heart in more ways than one!

So that's my story and I'm stickin to it!
Love it, hate it, or ignore it...but just believe it because it's the truth,
And it turns out that reality is often far more shocking/interesting than fiction!

:)