Pituitary Adenoma: Refusing to Take “No” for an Answer
It was Ian C.’s wife who first noticed the deteriorating health that eventually led him to seek out the help of Daniel Kelly, MD, Director of the Brain Tumor Center at the Saint John’s Cancer Institute at Saint John’s Health Center in Santa Monica. It was mid-2007, and Ian and his family had just moved from Fairbanks, Ala., to Seattle, Wash.
“Prior to becoming ill I was very athletic and engaged in life,” Ian, now 50, explained. “Gradually I found myself with no physical strength – couldn’t lift weights, couldn’t do sports, could barely get up the stairs. My wife described me as moody and irritable, but I didn’t really think there was much wrong. My wife kept insisting something was wrong and dragged me to the doctor.”
The first doctor Ian saw wrote off the changes. Ian was going through as a mid-life crisis of some sort.
“I was highly annoyed and insisted there was nothing wrong with me,” Ian said. “But at some level I knew things were not right.”
And that was only the first of the bad diagnoses Ian faced. In the beginning of 2008, Ian developed a pain in his groin, which convinced him to go to the doctor’s again. This time a testosterone level test was done. When Ian’s testosterone levels came back incredibly low, a brain MRI was prompted revealing a large pituitary adenoma. Although benign, these tumors of the “master gland” can cause serious life-changing problems including loss of pituitary hormonal function (which Ian had), visual loss and headaches.
“I went through a period of feeling terrified and then decided what would be, would be,” Ian said.
Ian started hormone replacement therapy and went in for his first surgery in Seattle in June of 2008.
“The surgeon told us that it was successful,” Ian said. “A few months later I was told he actually didn’t remove much of the tumor.”
Ian was referred for radiation, but when a follow-up MRI revealed his tumor had started to grow, Ian decided to go a different route and contacted Dr. Kelly.
“The very next day, he called us and gave us his opinion, which was that the first surgery had been unsuccessful and that radiation was contra-indicated,” Ian said. “We obtained two other expert opinions out of state, and they were identical to Dr. Kelly’s recommendation.”
When Ian went back to his original surgeon, he was told that his surgeon disagreed with Dr. Kelly and the other doctors.
“The “experts” in the group here in Seattle said no one could get the entire tumor out and that I would have this illness for the rest of my life,” Ian said. “They told me that there was no way that I could ever be off the hormone replacement treatment – that I needed radiation, drugs and possibly more surgery – and basically just accept it.”
But Ian wouldn’t accept his Seattle doctors’ diagnosis and decided to come down to Santa Monica and see what Dr. Kelly could do.
“The moment I met Dr. Kelly face-to-face, I felt completely confident,” Ian said. “By this time I had met so many experts and specialists, I was growing especially tired of doctors who presented as arrogant and cocky. Dr. Kelly was completely different. He clearly knew his trade and spoke in a manner that was convincing, but he was also compassionate. I remember his grin; it starts slowly and then spreads right across his face.”
Dr. Kelly decided the best treatment option for Ian would be a repeat endonasal transsphenoidal tumor removal, similar to the approach he had in Seattle. About 20% of Dr. Kelly’s pituitary surgery practice is for such reoperations of original surgeries performed elsewhere. This approach which uses the nostril as its point of entry to reach the pituitary gland in the skull base doesn’t involve facial incisions or post-operative nasal packing. Using an operating microscope and endoscope, Dr. Kelly was able removed the entire residual tumor.
“As we often see in such reoperation cases like Ian’s, the original surgery was unsuccessful because the two bony openings at the back of the nasal cavity and in front of the pituitary gland were quite small. In essence, the exposure was inadequate” Dr Kelly states. “When that occurs the surgeon is forced to work through a very narrow corridor, making it almost impossible to reach the entire tumor. By simply making larger bony openings, which in no way increases the risks of the surgery, the soft tumor is easily and totally removed.”
“Ian did very well after his surgery; we were able to get a complete tumor removal and his pituitary hormonal function has normalized as a result of getting the pressure off of his pituitary gland,” Dr. Kelly said.
Ian found his experience at Saint John’s to be great. The care was great and the nurses were incredibly compassionate and caring. He was discharged two days after the surgery, and he’s now back to his original state of activity.
“Right now I feel terrific,” Ian said. “It’s four months since the surgery and my pituitary has kicked back in, and I’m completely off the hormone replacement drugs. My three month post-op MRI revealed no residual tumor.”
Ian’s push for getting the best treatment paid off, and thanks to Dr. Kelly’s skillful work, Ian is now more than 5 years after surgery remains tumor-free and is playing squash, lifting weights and is glad he never stopped fighting for an answer.