Janet felt sick for three years before finally receiving a proper diagnosis.

 As a yoga instructor, Janet (name has been changed for privacy) had always maintained a healthy lifestyle. So when she  started to gain weight and noticed a drastic decrease in her energy levels, she knew something wasn’t right.

Janet began to rapidly gain weight, up to 2-3 pounds a day, despite no changes to her diet. In addition to weight gain, Janet noticed that she was losing hair and that she became increasingly unwell. She struggled with insomnia, developed a rash, and experienced GI problems, muscle weakness, and extreme fatigue. “I had extreme fatigue to the point where I couldn’t even get out of bed,” recalled Janet. “Any movement or activity caused me to lay down for half a day.”

Janet spent three years going to different specialists near her home in Miami Beach, FL, and even relocated from her home after being told that mold could be causing her symptoms. “They couldn’t find anything wrong with me,” said Janet. “Blood tests were showing up fine.” Eventually, Janet was referred to a neurologist who dismissed her concerns about her rapid weight gain. “I tried to tell the neurologist ‘This is not how I am’,” recalled Janet. “The neurologist did not believe me. I was not doing well on any of her balancing exams or strength exams.” Despite all of these concerns, the neurologist did not request any MRI imaging for Janet. Instead, the neurologist referred Janet to physical therapy.

Janet was also referred to three different nutritionists, but she continued to gain weight on each of their meal plans. “I knew I ate well, but I wanted to follow these nutrition plans in case I was missing something,” said Janet. “By the third one, I was still gaining weight, so I knew there was no connection with food and what was going on.”

After a long battle to find a diagnosis with dozens of referrals to different specialists, Janet ended up at an ENT surgeon’s office in Georgia after being diagnosed with a chronic sinus infection. During Janet’s consultation visit, she told her surgeon about her symptoms and how long she had been suffering. He told her that it could be Cushing’s disease, caused by a pituitary tumor, and ordered an MRI. On September 27, 2022, Janet finally received a proper diagnosis– she had Cushing’s disease.

“He has performed thousands of these surgeries. He is one of the best surgeons in the country, and he is the one that I wanted to operate on my brain.”

After receiving her diagnosis, Janet began researching online to find the best pituitary tumor surgeons in the country. Through her research, she found Dr. Nelson Oyesiku at UNC Health. After finding his name online, Janet was referred to Dr. Oyesiku by her endocrinologist, who had worked with him in the past. “Dr. Oyesiku specializes in this type of surgery,” said Janet. “He has performed thousands of these surgeries. He is one of the best surgeons in the country, and he is the one that I wanted to operate on my brain. I was happy to travel in order to be seen by such an exceptional and accomplished surgeon.”

Janet’s initial consultation was held virtually in November of 2022. “I felt heard,” said Janet about her consultation with Dr. Oyesiku. “He asked so many questions and he really thought about my case. He listened to my entire story, which was so important to me.”

Traveling to a different state for brain surgery can seem intimidating, but thanks to Dr. Oyesiku’s patient coordinator, David Baker, Janet felt that the process was fairly easy. “David coordinated all of the pre-op appointments for me before arriving in Chapel Hill for surgery,” recalled Janet. “He referred me to MedStay where I found accommodations at a discounted rate, making my trip straightforward and economical.”

Janet traveled to the UNC Medical Center in Chapel Hill, NC for her pituitary tumor surgery in January 2023. “I was ready and happy,” said Janet. “I felt confident because I knew I was in good hands.”

Dr. Oyesiku has devoted his practice to the care of patients with pituitary tumors and has performed over 4,000 pituitary tumor surgeries. “He’s so full of experience, that he can draw from,” said Janet. “My case was weird because my cortisol went up and down post-surgery, but Dr. Oyesiku told me that he had treated similar patients who eventually went into remission. It made me feel more confident.”

Janet’s pituitary tumor surgery lasted just over three hours from incision to closure. After surgery, she spent 5 and half days in recovery before being discharged. Janet then spent three weeks recovering in Chapel Hill before her husband drove her home to Florida.

“You want to be in the best hands possible in order to have the best outcome and the lowest risk.”

Now, three months post-surgery, Janet’s symptoms have improved significantly. Her blood pressure is normal. She has more stamina and can now walk for half an hour every day. She is sleeping better and her mood has improved. She no longer experiences brain fog and can think clearly. She is losing weight and the buffalo hump in between her shoulders is going down. Her menstruation is also back to normal.

When asked what she would say to other pituitary tumor patients looking to travel to UNC Health to see Dr. Oyesiku, Janet responded, “You want to be in the best hands possible in order to have the best outcome and the lowest risk.”

 

 

Written by: Makenzie Hardy, Marketing Coordinator, UNC Health Department of Neurosurgery