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Colleen Piccirillo's story: A mystery solved

09/05/2017

Colleen Piccirillo will never, ever switch hairdressers. Sitting in the salon in 2014, her stylist and friend of 40 years stumbled upon the diagnosis that had eluded Colleen’s Rhode Island doctors for the previous five years.

In that timeframe, Colleen, 54, had been plagued by extreme fatigue, fluid retention in her legs, bruising at the slightest touch, and a “frustrating and depressing” 100-pound weight gain—despite appropriate physical activity and a healthy diet. Her PCP, Dr. Amber Messitt, had been sending Colleen to specialist after specialist, trying to determine the root of her encroaching symptoms. Blood work, vein ultrasounds, heart valve checks, and a slew of other tests all came back normal. The doctors were stumped.

Until that late summer day in Salon Chic, as Audrey Ricci snipped, styled, and chatted with her friend, she noticed that morning’s guest on the TODAY show had identical symptoms to Colleen, and suggested she get checked for Cushing’s disease.

A diagnosis at last

Colleen took Audrey’s advice, and sure enough, within days, Dr. Messitt diagnosed her with Cushing's disease. With this 10-in-1,000,000 condition, a tumor on the brain’s pituitary gland causes an excess of adrenocorticotropic hormone (ACTH), which in turn stimulates an over-release of cortisol, a steroid hormone responsible for helping the body process sugar, fat, and manage stress. Dr. Messitt referred Colleen to Dr. Vorawan Ummaritchot at Providence’s Miriam Hospital, who ordered an MRI and located the pencil eraser-sized tumor wreaking so much havoc on her body.

Dr. Ummaritchot recommended surgery to remove the pituitary tumor, but as Miriam does not perform this procedure, she referred Colleen to her mentor, Dr. Ronald Lechan, Chief of the Division of Endocrinology, Diabetes and Metabolism and Co-Director of the Neuroendocrine and Pituitary Program at Tufts Medical Center in Boston to discuss surgical options there.

Discovering Tufts MC

The moment Colleen’s insurance approved her visit, she and her husband drove to Tufts MC to see Dr. Lechan and Dr. Carl Heilman, Neurosurgeon-in-Chief at Tufts MC.  “They explained everything so we could understand it,” says Colleen. “I instantly felt very comfortable with both of them.”

“Surgery is the proper treatment for this condition,” explains Dr. Lechan, “provided that the tumor can be removed. There are several medical treatments for Cushing’s now available, but they would be considered second line, and only begun if surgery could not be done, the location of the tumor could not be found, or if the patient required treatment of very elevated cortisol levels before surgery.”

Since Colleen faced none of these problems, her operation was scheduled for the day before Thanksgiving, 2015. “We went up the night before surgery and got a room at the DoubleTree Hotel right across the street [from Tufts MC]. It was comfortable and relaxing,” she says.

“The surgery took about three hours,” recalls Dr. Heilman, whose OR team included Dr. Elie Rebeiz, Otolaryngologist-in-Chief, a circulating nurse, scrub technician, anesthesiologist, and residents from neurosurgery, anesthesiology and otolaryngology. “Dr. Rebeiz made an opening into the sphenoid sinus by working through the nostrils with an endoscope. Then I took over. I made an opening in the floor of the sella turcica where the pituitary gland is located. I was able to dissect the tumor out of the pituitary gland and completely remove it.”

An “awesome recovery”

To Colleen’s surprise and delight, she awoke feeling perfectly fine. “I had no problem whatsoever. No pain.” After two nights at Tufts MC, she was discharged to complete her “awesome recovery” at home.

Instant results like Colleen’s are common for Cushing’s sufferers. “Cortisol levels fall into the subnormal range within 24 hours of the surgery,” explains Dr. Lechan. “These patients do tend to feel so much better once cortisol levels are brought under control.” Their well-being continues to improve as the tumor-induced weight melts off, muscle strength increases, and their blood pressure, blood sugar, and insulin levels return to normal.

Within a few weeks, Colleen was back to work as a full-time behavior specialist for disabled adults and part-time cashier, with the lone restrictions of no heavy lifting or bending down.

Finding balance

“The only problem I had,” says Colleen, “was reducing the steroid I was given following surgery. It was like detoxing, with pain and achiness weaning off it. But I stuck it out and [ultimately] felt fine with it.” According to Dr. Lechan, patients are prescribed post-operative replacement steroids (usually hydrocortisone) to ensure proper functioning over the months it often takes the pituitary gland to return to its normal ACTH secretion rate.

He and Dr. Heilman closely monitored Colleen’s progress. “We saw Colleen within two weeks of her surgery to be certain it was successful, and then about every two months while the hydrocortisone was adjusted and tapered,” he continues. After that, visits are annual.

“I can’t say enough how good they were; how nice they were,” says Colleen, reflecting on her experience with Dr. Lechan and Dr. Heilman. “I was so nervous [at first], but they explained everything in terms we could understand,” and that made all the difference.

Here comes the sun

Colleen’s future looks bright. “She has both biochemical and clinical evidence that she has been cured,” says Dr. Lechan. This is helped, in part, because her tumor was a tiny 8 millimeters—a microadenoma. “If the tumor is large and invasive, recurrence rates might be higher.”

With her weight back to normal, Colleen looks and feels like herself again. Before the tumor removal, “my whole face was swollen up and bloated,” she says. Her appearance made her too uncomfortable to wear a swimsuit. Happily, that’s changed since her surgery. “Last year was the first time I went back to the beach in five or six years.”

“It is particularly gratifying to see recovery from patients who have Cushing’s disease,” notes Dr. Lechan, “as the disorder can result in numerous medical problems and cause profound changes in appearance. If you first met Colleen when she presented with full-blown Cushing’s disease and then again now, you would be amazed with how different she looks as a result of normalization of her cortisol levels. She has also not required any hormonal replacement therapy following surgery since recovery of her adrenal function, so it is the best outcome we could possibly hope for.” 

For life

“I never would have thought a pituitary gland could do that much damage to a person’s body until I experienced it myself,” says Colleen, crediting her perseverance to the support of her amazing team—her husband, her children, her hairdresser (who she’s since taken to dinner multiple times), and her doctors.

Not only did this experience cement her forever hair stylist, it pinpointed her go-to medical center. Colleen asserts, “I would recommend anybody to Tufts MC.”

Person standing on a scale

Cushing's Disease

Diagnosing Cushing’s disease can be complicated, and typically, several lab tests are necessary.

View symptoms
Brain diagram

The Incredible Pituitary

The pituitary is a master gland controlling thyroid function, adrenal function, ovarian and testicular function, growth, milk production and urine volume. Therefore, anything that affects pituitary function can have profound effects on the body, depending on which and how many hormones become deficient.

Read more about the pituitary gland from Dr. Lechan