Unmasking Cushing’s Disease: Carol’s Journey through Mystery Symptoms 

A benign, pea-sized tumor was wreaking havoc on Carol’s body. And no one—including the 10 doctors she consulted for help with her mysterious symptoms—knew it was there.

That is, until a specialist at Emory Healthcare stepped back and took a holistic view of Carol’s health.

A rare skin infection. Changes in her spine. Heart failure.

This unlikely mix of symptoms Carol was experiencing pointed to one thing: a tumor in her pituitary gland. Tests later confirmed the underlying diagnosis of Cushing’s disease.

That diagnosis marked a turning point—one that would lead Carol to the specialists who could help her reclaim her health.

Before her illness, Carol and her husband, Bruce, traveled extensively and loved to hike. “We climbed big mountains, like Mount Meru in Tanzania, the Inca Trail in Peru and the Dolomites on the Austria–Italy border,” says Carol, 75, who’s lived in the Atlanta area for 30 years. “We also enjoyed cycling. It doesn’t seem that long ago that I was doing ‘century rides’ throughout Georgia, which cover 100 miles in a day.”

The first sign of trouble with Carol’s health was in October 2023. Carol was taking a brisk walk with a friend and realized she was panting for air. “That was so unusual for me,” she says. “I wondered if I was just getting old or lazy. When I got home, I decided to check my blood pressure. It was so high that my primary care doctor sent me to the emergency department.”

High blood pressure was just the beginning of a slow decline. Carol became increasingly tired and weak over the next several months. Spin classes, once a source of joy, were out of the question. She also developed hard lumps and bumps on one of her arms that worsened by the day. “My skin looked like a dinosaur’s,” she says. Carol learned she had a mycobacterial infection that would require drug infusions at a local clinic every day for seven months. This was just the beginning.

Meanwhile, Carol’s fatigue intensified. Within a year, Carol could no longer walk without assistance. She gained about 30 pounds, all of it in her midsection and neck. Her eyes were weepy and the hair on top of her head stopped growing. She had blotchy, gray patches all over her arms and legs. Carol also developed scoliosis, a condition where the spine curves sideways in an “S” shape. Friends who saw her in the grocery store would do a double-take; Carol was almost unrecognizable.

Carol went from specialist to specialist, but no one had an answer for her. “Each doctor focused on their area of expertise, whether it was my heart disease or spinal deformity or something else,” she says. “Nobody put the whole picture together.”

By the fall of 2024, Carol’s life had drastically changed. She recalls she could only sit in a chair all day, drink copious amounts of water and “just kind of exist.”

That is, until a friend referred her to Edmund (“Ned”) Waller, MD, PhD, a medical oncologist at Winship Cancer Institute of Emory University.

A Doctor Who Saw the Whole Picture

Carol always tears up when she talks about her first meeting with Dr. Waller. “He didn’t look at this symptom or that symptom,” she says. “He saw me, not my distended stomach or my skin infection or my wheelchair. He had reviewed my records thoroughly before the appointment, and after about five minutes of talking to me, he said, ‘I think you have Cushing’s disease.’”

Carol hadn’t heard of Cushing’s disease before. But she immediately felt relief. “Finally, my illness had a name,” she says. “That meant other people must have experienced what I was going through. And there might be a path out.”

“That’s where I am now,” she adds. “On the path out.” 

Follow-up tests confirmed Carol’s diagnosis of Cushing’s disease, the most common form of Cushing’s syndrome. People with this rare hormonal disorder have a noncancerous tumor in the pituitary gland, located at the base of the skull. The tumor secretes too much ACTH (adrenocorticotropic hormone), which leads to uncontrolled cortisol levels in the body.

When cortisol levels are too high for a long period of time, people can experience:

• Anxiety and stress
• Blood clots
• Brittle bones
• Edema (swelling)
• Congestive heart failure and strokes
• High blood sugar levels (diabetes)
• Insomnia (disrupted sleep)
• Irregular hair growth
• Joint and ligament pain
• Memory problems and difficulty concentrating
• Neuropathy
• Skin issues, including bruising, thinness and tearing
• Uncontrolled high blood pressure
• Weakened immune system, which can lead to infections
• Weight gain, often in the belly and above the collarbone

Doctors often call Cushing’s disease “the big imitator” because it can look like many different conditions. Diagnosis is challenging, but the treatment is straightforward: surgical removal of the tumor. Without treatment, Cushing’s disease can be fatal.

Dr. Waller referred Carol to neurosurgeon Tomas Garzon-Muvdi, MD, MsC, director of Emory Pituitary Center. The center treats all pituitary disorders, including cancerous and noncancerous tumors. People come to the center from all over the south for care. Dr. Garzon-Muvdi and neurosurgeon Gustavo Pradilla, MD, perform between five and 10 skull base surgeries a week, many of them pituitary tumor removals.

Dr. Garzon-Muvdi created a treatment plan for Carol, working closely with a neuroendocrinologist (hormonal disease specialist) and an otolaryngologist (ear, nose and throat specialist). He also shared her case with a group of doctors from different fields at Winship’s tumor board, so they could review it together and offer their advice.

“When you come to Emory for a pituitary tumor condition, you don't only get me, you get experts in endocrinology, radiology, otolaryngology and whatever else you need,” Dr. Garzon-Muvdi explains. “Emory has really invested in improving outcomes and making our center a destination for people with pituitary and other skull base tumor surgeries.”

Dr. Garzon-Muvdi performed Carol’s surgery on December 12, 2024. The minimally invasive procedure involved placing endoscopes (thin, rigid tubes) into the nose and advancing tiny cameras and tools through the scopes to the surgical area.

“The goal of surgery is to remove the tumor in one piece,” Dr. Garzon-Muvdi explains. “If we leave even one cell behind, the disease can recur.”

Neurosurgeons almost always use a minimally invasive approach for these tumor resections, which require delicate work near the optic nerves, carotid arteries and brain stem.

“A less invasive approach is critical for people like Carol who are very sick going into the surgery,” Dr. Garzon-Muvdi explains. “It leads to less blood loss and a faster recovery compared to traditional, open surgeries.”

On a Healing Track

Surgery eliminated the problem of the flood of cortisol in Carol’s body. Her symptoms began to subside within a few weeks. She has lost about 20 pounds, and her strength and stamina continue to improve. She still has to use a wheelchair to cover longer distances, but she can manage a trip to the farmer’s market with help from hiking poles.

She and Bruce have started to travel again. Most recently, they recently flew to California to see their newest grandchild. In July 2025, she did her first spin class since becoming ill.

Unfortunately, Carol still deals with significant effects of Cushing’s disease, such as bone loss and heart disease. She has intense back pain from the scoliosis and hopes that corrective surgery will provide relief.

Carol credits her husband, friends and children for supporting her through this profound, life-altering health crisis. She also has found solace and camaraderie in an online support group for people with Cushing’s disease sponsored by the Cushing’s Support Research Foundation. “I take part in two-hour Zoom calls with other people every month, and hearing their stories reminds me how lucky I am,” she says. “I received great care at Emory. I'm improving.”

Carol is hesitant to set goals for her continued recovery. But she knows she’s moving in the right direction. “It’s not over yet, but it’s wonderful to be on a healing track,” she says. “Cushing’s and scoliosis have taken a lot from me, and I treat my body with gentleness and care. I’m grateful to have the chance to live my life more fully again.” 

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Visit Emory Pituitary Center for more information or call 404-778-5770.