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Cyndi Kenyon's story: Saved by my super-surgeon

09/01/2017

Cyndi KenyonCyndi Kenyon knew something was wrong. What was first vague pressure behind her left eye—an oncoming sinus infection, she’d thought—was now strong. Constant. Accompanied by a relentless, profound headache waking her at night, unimproved by over-the-counter painkillers.

On January 25, 2017, she realized the pain was far worse than any migraine she’d ever had and went to her local ER. Blood work and a CT scan readily revealed a pituitary adenoma, or tumor, which—though benign—would require a consult with a neurosurgeon and eventual surgical removal. Relieved yet rattled by the diagnosis, Cyndi, 48, went home and, on a friend’s recommendation, made an appointment for two weeks later with Tufts Medical Center's Neurosurgeon-in-Chief Carl Heilman, MD.

But her pain and pressure remained unyielding, so when she also began vomiting four days later, she returned to her local ER. More blood work determined Cyndi—forever a borderline anemic—was suddenly down two units of blood. The local medical team believed nothing more was to be done until her appointment at Tufts MC and sent her home. 

The next morning, Cyndi woke with “a weird sensation from head to foot. That’s when I knew something was really wrong,” she says. She soon started shaking, and for the third time in a week, raced back to her local ER. Blood tests discovered plummeting sodium levels, or hyponatremia. “I was on the verge of seizures at that point,” she recalls, and was medically evacuated to Tufts Medical Center’s Neurocritical Care Program in downtown Boston.

Arriving at Tufts MC

A flurry of Tufts MC medical teams swiftly evaluated Cyndi as she drifted in and out of consciousness, yet she clearly remembers when Dr. Heilman arrived. “I was immediately at ease when I got to meet him and shake his hand. I felt comfortable with him right away,” she says. He explained she had developed a third cranial nerve palsy as a result of her walnut-sized tumor, so it would have to come out the next day. 

“Cranial nerve palsy causes double vision and a drooping eyelid,” Dr. Heilman says. “Recovery will be faster and more complete if surgery is done quickly—this is why she needed urgent surgery. However, we had to wait to correct her sodium level in her blood overnight before it was safe to put her under anesthesia.” 

An emergency operation

Once she stabilized, Dr. Heilman performed Cyndi’s two-and-a-half-hour surgery along with Tufts MC Otolaryngologist-in-Chief Elie Rebeiz, MD, an anesthesiologist, residents from neurosurgery, anesthesiology and otolaryngology, a scrub technician, and a circulating nurse.

“Dr. Rebeiz made an opening into the sphenoid sinus by working through the nostrils with an endoscope for visualization,” Dr. Heilman says, after which, “I made an opening through the floor of the sella turcica and dural membrane [or dura mater], exposing the pituitary gland. I then identified and removed the tumor with suction, curettes, and microdissectors.”

Cyndi was pleasantly surprised to rouse from her operation free of pain. “It was amazing,” she says. “I went from feeling like death to feeling completely ok.” She spent three inpatient days treated by Tufts MC’s “excellent” staff, including the endocrinology team, who had been closely monitoring her from moment one. 

The endocrine perspective

Examination of her tumor after its removal revealed several things, says Ronald Lechan, MD, Chief of the Division of Endocrinology, Diabetes and Metabolism and Co-Director of the Neuroendocrine and Pituitary Program at Tufts MC. “Cyndi had a pituitary adenoma producing an excess of growth hormone, or acromegaly,” which impacts about three in a million people. “On pathology, areas of necrosis [dead cells] and blood suggested she may also have had pituitary apoplexy”—spontaneous hemorrhaging of a pituitary tumor. 

“When this occurs, patients often complain of severe headaches,” he continues. “The bleeding can put pressure on the brain and cause potentially fatal hypoadrenalism (underactive adrenal glands unable to produce cortisol) due to the pituitary’s inability to produce the hormone ACTH. Low sodium levels like Cyndi’s are often a manifestation of severe hypoadrenalism. Pituitary apoplexy is therefore considered an emergency and these patients should be hospitalized for observation and/or treatment.” 

Even if Cyndi’s adenoma hadn’t made itself known in such dramatic fashion, Dr. Lechan says, “surgery is the preferred, initial treatment for these tumors, particularly if the tumor is less than one centimeter.” He points out that patients with larger tumors typically require additional medical or radiation treatment. “As the adenoma enlarges, it can interfere with normal anterior pituitary function and result in a number of endocrine deficits. However, there are many effective pharmacological options to treat these patients.” 

A positive outlook

For this, Cyndi is grateful, having found herself with hypothyroidism, anemia, amenorrhea, and diabetes insipidus as a result of her tumor. She has been taking medication to help these endocrine issues since her surgery, but she isn’t bothered in the slightest. “I’m lucky that’s all there is,” she says. “Now that I’ve hit the six-month post-op mark, other than feeling cold from my thyroid [condition], I feel pretty much 100%.”

And she looks great from a clinical perspective. “Cyndi’s prognosis is quite good,” says Dr. Lechan, who will continue to carefully monitor her endocrine deficiencies via visits every four months.

As for Dr. Heilman, because his 30- and 90-day follow-ups discovered no post-surgical problems, Cyndi is down to annual surgeon appointments for the next three years—and then, if all is clear, will drop to a visit every other year. “It’s bittersweet, because I love the man,” she laughs.   

Cyndi is still in disbelief that her post-op was such a non-event—that, though she was decidedly more tired than usual, she returned to her job as a legal secretary just three weeks later and jumped right back into family life. “I have grandbabies to chase after,” she laughs. “They keep me on my toes!”  

“I got the best of the best,” she says of her Tufts MC experience. Dr. Lechan’s meticulous vigilance and kindness continuously impress her, and she reiterates, “Dr. Heilman was amazing. His reputation precedes him. I call him my super-surgeon. Now, I always say, even for a hangnail, we’re going to Tufts MC!”

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