My Brother’s Battle with Cushing’s Syndrome

I wish I had never heard of Cushing’s syndrome. A rare disease, it isn’t something that most of you will ever encounter in your lifetime. However, being unaware of the disease and its symptoms could cost you your life or the life of a loved one.

Randy-on-drums-webMy brother Randy died in 2002 at the age of 45 from the effects of Cushing’s syndrome. In the hospital, equipment monitored Randy’s breathing, oxygen levels, heart function, and other critical information. As his body began to shut down, piercing alarms sounded as body functions failed one by one. The nurse frantically tried to silence the alarms as I stood in silence next to Randy’s bed. Thinking about it now, it is still hard to understand all that happened leading up to his death that night in March. As I look back at all the pieces of the story, I wonder if his death could have been prevented.

Before becoming ill, Randy had an active life and was well known in the city of Fullerton, California. Randy and I moved to the area with our parents in 1965, and Randy stayed in Fullerton making it his home. Randy was a musician and started playing drums when he was 12 years old. He stuck with it over the years and played drums with many rock music groups in the Orange County area of Southern California; groups that included, 7th Grade, Silicone Silos, 16 Tons, The Vectors, and Social Distortion. He was well known and admired in the tight Orange County music community.

The band 16 Tons, though short-lived, received much critical acclaim. Drum! magazine wrote in its August 1996 issue, “16 Tons explodes with furious energy, propelled by Carr’s powerhouse drumming.”

Randy toured with the band Social Distortion from 1993 through 1995 as their drummer at all live performances during this period. After a Los Angeles show, Mike Boehm wrote in the May 8, 1995 Los Angeles Times, “S.D.’s set was the longest and by far the finest of the day, 55 minutes of dark majesty powered by a new drummer, Randy Carr, who played his first major gig with the band and helped Social Distortion churn and drive with impressive force and fresh suppleness.”

In addition to playing drums in local bands, Randy was a respected drum instructor at Mo’s Music Center in Fullerton (formerly Fullerton Music) and wrote the book, Advanced Grooves for the Advanced Drummer as an aid for his students. He also played guitar and experimented with music recording and editing at his home studio.

Randy was the little brother, 18 months younger. We were close growing up as young children, and I have many happy memories of our times together in those days. We grew up during the early years of rock-n-roll and Beatlemania, and as small children we would pretend to play together in a rock-n-roll band. I was the drummer then and Randy was the front man on guitar, as we played and sang to songs by groups like The Beatles, The Rolling Stones, and the Dave Clark Five. We had great fun, but it was Randy that set out to make these childhood dreams a reality.

We grew apart in later years as we each pursued our own interests. I progressed in more conventional endeavors that included college and work. Randy was the free-spirit, often the starving artist, and rejected a conventional life to pursue his music. Our differences sometimes created friction between us, but I admired his talents and at many times envied his lifestyle.

It’s difficult to say when Randy’s problems with Cushing’s started. He knew something was wrong, but his symptoms developed gradually. He first complained of constant fatigue and body aches. He thought maybe he had become sick from glues and solvents a carpet installation crew had left in a trash bin near his apartment. He spent months talking to doctors trying to find out what was wrong while his symptoms increased. By the time he found someone to accurately diagnose his symptoms, he was extremely ill. Finally, doctors at UC Irvine Medical Center told him he was suffering from Cushing’s syndrome.

 

What is Cushing’s Syndrome?

Cushing’s syndrome, or Cushing’s,is a hormonal disorder discovered by physician, surgeon, and endocrinologist Harvey Cushing (1869-1939). Sometimes called hypercortisolism, it is caused by the body’s prolonged exposure to high levels of the hormone cortisol. Cortisol is naturally present in the body and performs a number of vital tasks. It helps maintain blood pressure and cardiovascular function, reduces the immune system’s inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. Cortisol also helps the body respond to stress. People under stress normally have high levels of the hormone. People suffering from depression, alcoholism, malnutrition and panic disorders also have increased cortisol levels.

The body’s hypothalamus and pituitary gland are in charge of keeping cortisol precisely balanced to meet the body’s daily needs. If something goes wrong with these controls, cortisol production can go dangerously awry. Realistically, Cushing’s syndrome is relatively rare and most commonly affects adults aged 20 to 50 years old. Estimates are that Cushing’s affects 10 to 15 of every million people each year, where women account for 70% of all cases.

 

Symptoms

Randy had many of the common symptoms. Initially he became weak and fatigued, and he thought he was suffering from a cold or flu. He was irritable. Before he became seriously ill there was an occasion with me where he was irritable and became angry over nothing. Randy had a temper, so this behavior wasn’t completely out of character, but this incident could have been an early indication of his Cushing’s.

Later he gained weight in his face and mid-body, and lost muscle mass in his arms and legs. At the time he was finally admitted into the UC Irvine Medical Center Hospital, he couldn’t hold himself up to walk. He was seriously depressed. Depression is a typical effect of having Cushing’s, but he was also experiencing despair from being unable to get a proper diagnosis and medical treatment for his debilitating symptoms.

Common Signs of Cushing’s:

  • Weight gain in face (sometimes called moon face), above the collar bone and on back of neck (buffalo hump)
  • Skin changes such as bruising, purplish stretch marks and red cheeks; excess hair growth on the face, neck, chest, abdomen, and thighs
  • Weakness and fatigue
  • Loss of muscle
  • Menstrual disorders in women; menstrual periods may become irregular or stop completely.
  • Decreased fertility and diminished sex drive (libido) especially in men
  • Hypertension
  • Diabetes mellitus: where the kidneys are unable to retain water and large volumes of urine will be produced. This will cause you to feel very dry and thirsty.
  • Depression with wide mood swings

 

Causes

One of the most common causes of Cushing’s syndrome is called Pituitary Cushing’s and is the cause of the majority of all cases of Cushing’s. The pituitary gland is a small gland below the brain, just behind the nose. One of its functions is to control the production of cortisol in the body. It does this by producing another hormone called ACTH which stimulates the production of cortisol in the body.

Pituitary Cushing’s is usually caused by a tumor on the pituitary gland which upsets the gland and increases the amount of ACTH. The tumor may be malignant (cancerous), but in most cases the tumor is benign (non-cancerous). Randy’s Cushing’s was caused by a tumor on his pituitary.

In other cases the increase in ACTH can be the result of tumors elsewhere in the body, which are producing their own ACTH. This will have the same effect on the body, but the treatment may be different.

Only a doctor can accurately diagnose Cushing’s syndrome. Unfortunately, possibly because Cushing’s syndrome is rare, many doctors do not recognize the visual symptoms of Cushing’s and fail to test for it. Education campaigns are becoming more common in an attempt to inform the medical community and the public of the symptoms and treatment of Cushing’s syndrome. I can’t help but think that if Randy had been diagnosed sooner, and treated earlier, he might have overcome the effects of Cushing’s.

 

Treatment

Treatment of Cushing’s syndrome will vary depending on the specific reason for the excess production of cortisol. Treatment will typically include the removal of the affecting tumor. If that does not correct the problem or eliminate the symptoms, the patient may require a lifetime of hormone controlling drug treatments. Cushing’s syndrome, when not fatal, can still become a lifetime battle.

Based on conversations Randy had with his doctors shortly after his diagnosis, he was confident he would be feeling better soon. He had an operation to remove the tumor on his pituitary gland. In Randy’s case however, this did not eliminate his problems or his elevated cortisol levels and the doctors suspected there might be other tumors. They were considering another operation, but this time considered completely removing the pituitary gland. Without a pituitary gland, Randy could look forward to a lifetime of difficult hormone treatments.

Randy-B&WFirst Randy had to regain some strength before the doctors would attempt a second operation. But my brother was never able to bounce back from the first operation and the continuing effects of Cushing’s. Cushing’s weakened his immune system and complications developed including pneumonia. Infection quickly spread from his lungs to his brain and an MRI showed multiple brain abscesses had developed. He slowly shut down over a period of days until dying in his hospital bed.

I miss my brother. We had some bridges to mend, and some good times yet to have together. I will miss our old age together and being able to look back on our lives to reminisce about our childhood and our family. It is unfortunate that before his death most of our recent conversations were arguments about the care of our father and mother, then in their final years and urgently needing our support and care. Our father died just one month before Randy, and we were never able to grieve for our father together.

Cushing’s syndrome, though a rare disease, still affects thousands of people each year. Its affects can be devastating and, as is typically true, early detection and treatment can increase one’s chances of a complete recovery. Currently, many doctors are unaware of Cushing’s syndrome and its symptoms. Education of the medical community and the general public about Cushing’s syndrome is critical if those affected by the disease are going to have a fighting chance.

 

For More Information

Articles about Cushing’s syndrome can be found in medical libraries, some college and university libraries, and through interlibrary loan in most public libraries. The following organizations, their websites referenced for the writing of this article, can also assist with information:

Cushing’s Support and Research Foundation, Inc.; web-link: www.CSRF.net

The Pituitary Network Association; web-link: www.pituitary.org

Endocrine and Metabolic Diseases Information Service; web-link: www.ninds.nih.gov/disorders/cushings/cushings.htm

Cushing’s Help and Support; web-link: www.cushings-help.com

Medline Plus; web-link: www.nlm.nih.gov/medlineplus/cushingssyndrome.html

 

More about Randy at,

Randy Carr Article in Wikipedia: http://en.wikipedia.org/wiki/Randy_Carr

One comment

  1. Brian Poe says:

    Brian Poe

    My Brother’s Battle with Cushing’s Syndrome | Carrsight