And It's About Time There Was Some Support For Cushing's!
Tuesday, November 06, 2007
Story last updated at 11/6/2007 - 1:09 am
CARRIN KETCHUM will soon be getting control of her life after a longtime illness that caused sudden gain in weight, hypertension and more
By Nikki Patrick | The Morning Sun
Carrin Ketchum, Baxter Springs, is undergoing delicate neurosurgery today at Swedish Medical Center in Seattle.
If successful, the operation — to remove a tumor on her pituitary gland — will cure a condition that went undiagosed for 13 years.
She suffers from Cushing's Syndrome, which is considered to be a rare disease because only 10 people per million are diagnosed with it.
"In fact, it's probably more common than most doctors believe, and rarely diagnosed as opposed to simply being rare," Ketchum said in a telephone interview shortly before leaving for Seattle.
Originally from Arma and a 1993 Northeast High School graduate, Ketchum believes that she's probably had the condition since she was 19.
"One of the symptoms of Cushing's is sudden weight gain, and the year I was 19 I gained 60 pounds in a short time," she said.
As the disease progresses, it causes numerous problems, including hypertension, diabetes and muscle atrophy. "There are cosmetic changes, such as acne and development of a ‘buffalo hump,' a fat deposit on the back of the neck," Ketchum said. "The central body gets bigger but the arms and legs don't, so that they look out of proportion."
In the past several years, she developed muscle weakness. "My muscles, especially my shoulders and hips, have gotten very weak," she said. "I've had times when it was difficult to walk. I fell twice over the weekend, once getting out of the bathtub."
Ketchum has also experienced another set of Cushing's symptoms that has been especially distressing.
"The disease has added periods where I suffer from high anxiety, panic attacks and become socially isolated," she said. "Over the last few years I have opted out of most social gatherings because I simply don't feel well or am in a lot of pain."
One of the very worst things about Cushing's Syndrome is the difficulty in diagnosing it. Its many symptoms often mimic other conditions. If a doctor doesn't connect the symptoms together, it can be missed or dismissed as hypochondria. This can be extremely frustrating to those with the disease.
"It's a hard place to be when you know in your heart something is drastically wrong with you, but your tests all come back fine," Ketchum said. "At one time I came to the conclusion that I must be mentally ill, but my doctor assured me that I was not."
Over the past 13 years she has consulted more than 17 doctors for treatment of her symptoms. "In addition to conventional medical providers, I've also consulted an herbologist, two nutritionists and two personal trainers," she said.
In December 2006, she finally had abnormal results from test her doctor had ordered.
"It was 1 a.m. when I googled the test results — Cushing's patients typically don't sleep well — and read that this test was used to diagnose Cushing's Syndrome," Ketchum said. "I had never heard of the disease before, but the symptoms were like looking in a mirror. I rushed to the bedroom, woke my husband, Tim, and told him that I knew this was what I have."
However, her doctor wasn't convinced because the test results weren't high enough and results were normal on another test.
She asked for a referral to Swedish Medical Center in Seattle because it is known around the world for the excellence of its neuroendocrine program.
Additional testing finally confirmed her illness. "I've driven to Joplin for blood draws and urine tests," Ketchum said. "I've had tests at 4 a.m., midnight and 6 a.m. Since April I've had 40 to 50 blood draws, MRIs and CAT scans. I went to Seattle twice for a full week of tests and in April they found the tumor on my pituitary gland."
She event went to Los Angeles for a second opinion. "The second doctor agreed with the first — that I had a tumor on my pituitary that was probably causing my symptoms," Ketchum said.
The treatment is removal of the tumor, technically called a transphenoidal pituitary tumor resection, being performed by Dr. Mark Mayberg, Seattle neurosurgeon.
Ketchum said that she'll probably be in Seattle about a week. "I'll get high doses of steroids at first, but they'll eventually wean me off them when my pituitary begins to function again and my adrenal glands wake up," she said. "Recovery will be a journey all its own, and if my surgery is successful it still may take a couple of years before I'm functioning at 100 percent. I'm not even sure what 100 percent will feel like."
She looks forward to being in better health than ever before, to life with her husband and their 6-year-old twins Sarah and Logan.
Ketchum also has a mission. "I want to raise awareness and understanding about Cushing's Syndrome so that others may benefit from a quicker diagnosis with less long-term damage to their bodies," she said.
Carrin Ketchum, left, is scheduled to undergo neurosurgery today at a Seattle hospital to cure an illness that went undiagnosed for 13 years. Pictured with her are her husband, Tim Ketchum, and their twins Sarah and Logan, 6. [Photographer: morningsun.net]