NYT Article about a Young Person w/ Cushings

[Guest Gunnar]

A Tumor Disguised by Puberty

By ZACHARY ALEXANDER STACKELL

http://www.nytimes.com/2002....temail0

 

I began to gain weight at the age of 14 and went from a healthy 160 pounds to an overweight girth of 227 pounds at 5 feet 8 at age 17.

 

During that period, I thought that the weight gain, skin problems and excessive fatigue I was experiencing were all simply stages of puberty.

 

It was not until I was 17 that I learned that these were all symptoms of a tiny tumor on my pituitary gland that went undiagnosed for four years.

 

Before the diagnosis, I ate properly and swam daily for the high school swim team, yet my weight increased.

 

I stopped growing by my sophomore year in high school, and my skin was starting to break out.

 

When I was 15, I was 5-8 and weighed 210 pounds.

 

Hair began to grow rapidly all over my body, while strange purple lines started to appear on my side and on the inside of my thighs.

 

Soon, I was getting muscle cramps, shortness of breath and even creaky bones.

 

The anguish I felt from being overweight and unable to take part in physical activity was overwhelming. I took my aggression out on my family in uncontrollable mood swings.

 

By December of my senior year, my doctor had given me more blood tests to find out what was wrong.

 

The results showed that my liver functions were abnormal, and my doctor decided to conduct a 24-hour urine analysis.

 

The test on the urine indicated that levels of a hormone called cortisol were elevated.

 

Cortisol ? which is linked to stress, anxiety, anger and the fight-or-flight response ? was being mass-produced inside my body ? a clear sign of Cushing's syndrome.

 

My general practitioner concluded that I had it.

 

In January, I was scheduled for numerous tests, X-rays, anything that could determine the cause of my Cushing's syndrome.

 

There were only three main causes of the disease: the pituitary adenoma (an often benign tumor on the pituitary gland); an adrenal adenoma, which is a small, often undetectable, tumor on or inside the adrenal gland; or an adenoma in the lung, which is 95 percent undetectable.

 

After more tests, including more sensitive M.R.I. scans, the doctors found a mass about four millimeters in diameter inside my pituitary gland ? a pituitary adenoma.

 

It was late February, and I weighed 230 pounds.

 

My muscles were beginning to deteriorate, causing me to be in pain with every step or movement, my stomach had bulged and my hair began to fall out even more.

 

I went to another team of doctors that immediately scheduled a petrosal sinus sampling.

 

This test was a highly invasive procedure. The doctors went through the arteries near the groin with two catheters all the way up to the pituitary gland to sample the blood in the surrounding area.

 

I was released that evening, and the tests proved that the tumor was on the left side of my brain. My doctors had enough information to perform the surgery necessary to remove it.

 

I underwent a seven-hour operation in which doctors went through my upper lip and nose with tiny surgical tools and into my pituitary gland to remove the tumor successfully.

 

I awoke with my nose stuffed with packing, my lip stitched, and IV's hooked up to both arms.

 

I felt horrible.

 

On my third day in the hospital, I received good news from my doctor: my Cushing's syndrome was cured. Blood tests indicated that my cortisol levels had dropped significantly.

 

I returned home.

 

My pituitary had stopped producing the antidiuretic hormone that prevents people from drinking too much and producing too much urine.

 

I needed to use a nasal spray to replace this hormone for a while, but the need ended in September.

 

Weight loss began immediately, and I lost 30 pounds within the first two months after surgery and am still on the road to recovery.

 

Today at 18, I weigh 168 pounds, my lowest weight in four years.

 

I still get tired very easily, and I need to keep away from strenuous activity, yet I feel better every day. I am in college now, and beginning to get my life back to normal.

 

I learned many things through this process.

 

I learned patience, and the fact that the world does not stop just for you.