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Treating an Elusive Syndrome
The symptoms of Cushing's are caused by prolonged exposure to high levels of cortisol, a hormone that helps the body respond to stress. The disease is difficult to diagnose because the symptoms develop slowly and are nonspecific, such as weight gain, high blood pressure and depression. Patients go undiagnosed or misdiagnosed for an average of seven to eight years. For Joyce it was even longer: more than 15 years. Her disease stemmed from a tumor on her pituitary gland, which stimulated her body to produce dangerously high levels of cortisol.Joyce's happiness at finding a diagnosis turned to fear when she learned about the treatment: brain surgery. Al took his research skills to the Internet, soon learning that the success in curing a patient of Cushing's disease is directly related to how experienced the neurosurgeon is. So he set about narrowing the field to those who did hundreds of pituitary tumor removals a year, ultimately choosing endocrinologist Beverly Biller, MD, and neurosurgeon Brooke Swearingen, MD, at one of the country's leading pituitary units at Massachusetts General Hospital in Boston.
Dr. Swearingen removed the tiny pituitary tumor through the sphenoid sinus, a facial air space behind the nose. A cut, only about half an inch, is made in the back wall of the nasal cavity and through it the surgeon can enter the sinus.
Joyce's surgery went without a hitch. "I didn't have postoperative problems," she says. "I think I was just lucky." While many patients with Cushing's live in fear of a reoccurrence in the first few years after their surgery and find that it takes up to a year to lose the excess weight, Joyce's recovery was swift. The pounds dropped off and stayed off, the bruising and swelling on her legs disappeared, and she was able to wear skirts again. Her hair grew back, and her bad skin cleared up. Best of all, she says, "I was so happy that my memory was coming back and I could feel like a normal person."
One of her biggest regrets is how her mood swings must have affected her son Albert when he was growing up. "The only mother he knew was fueled by cortisol," Joyce says. "I was so weirded out, so compulsive, so short with him. A lot of my Cushing's friends, who I've met through the Cushing's Support and Research Foundation, are divorced, so I thank God that I have my husband."
"I guess it proves that I love her," her husband says. "Sometimes she was difficult to deal with. But we always had hope."
Perhaps because she is a naturally bright and positive person, Joyce does not hold anyone responsible for her suffering and misdiagnosis, although she does question why none of the doctors ever put her symptoms together earlier and tested her for Cushing's. Instead, she was regarded as an obese woman who should lose weight.
To prevent others from suffering for so long with a misdiagnosis like hers, Joyce now volunteers with the Cushing's Foundation at medical conferences, working to increase awareness of the disease among the medical community. But she also believes it is important for the public to be aware of Cushing's. "An ordinary person might recognize or notice a friend who is obese and say, 'You know, I read about Cushing's disease, and I think you should get tested.' That could make all the difference."
When she had the disease, Joyce recalls, she "wore long pants and tent shirts with long sleeves all the time. I had to be camouflaged." When she was well again, she threw out boxes and boxes of size 16 and 18 clothes. "Now I can wear shorts. I'm so happy to be able to wear something stylish again." She is a different person now -- and it shows.
For more information on Cushing's syndrome, contact the Cushing's Support and Research Foundation, csrf.net.
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