Shona Holmes is a 45-year-old wife, mother and soon-to-be grandmother from Waterdown, Ontario who could have lost her vision and suffered other major health problems had she relied on the Ontario government’s health care system.
In the spring of 2005, Shona, who had a history of endocrine problems including Cushing's disease, began to experience a host of worrisome symptoms—headaches, vision problems, anxiety attacks, high blood pressure and fatigue.
An MRI conducted on in May of 2005 was reported as showing an 8 - 9 mm soft tissue lesion located near her pituitary gland, inside the head, just below the brain. The exact diagnosis was uncertain. The MRI report mentioned the possibility of various types of tumours. Testing conducted by Shona's optometrist a few weeks later confirmed a significant loss of vision in both eyes.
Shona's family physician referred her to a neurologist and an endocrinologist for evaluation of her “pituitary tumour”.
Shona was shocked to learn how long she would have to wait to see the Ontario specialists. The earliest available appointment with a neurologist was in the third week of July. The earliest available appointment with an endocrinologist was in mid-September. Although she was rapidly losing her eyesight, Shona couldn’t arrange for anyone in Ontario to see her sooner. With nowhere to turn, she decided in early June, 2005 to have her symptoms evaluated at the Mayo Clinic in Arizona.
Within two weeks of arriving in Arizona, Shona had met with an endocrinologist, a neurosurgeon and a neurologist. Their tests showed that by then, her pituitary lesion had grown and that she had lost half the vision in her right eye, and a quarter in her left.
The Mayo Clinic specialists, working closely together, determined that her headaches and deteriorating vision were likely being caused by the pituitary lesion, which was felt to be a Rathke’s cleft cyst (a fluid-filled sac growing near the pituitary gland at the base of the brain), although other categorizations of the lesion were not ruled out. Although this growth was not the carcinogenic tumour that the Ontario MRI scan had raised the spectre of, it was nevertheless capable of causing severe problems. As it continued to fill with fluid, it would exert increasing pressure on the nearby tissue, including her optic chiasm and her pituitary gland. Vision problems would increase, and hormone problems had already been triggered.
The Arizona medical team urged Shona to have the growth (which they also referred to as a “pituitary tumour”) surgically removed immediately to avoid the risk of permanent blindness. Due to troubling endocrine issues affecting Ms. Holmes, including the possibility of an adrenal tumour, they further urged that pituitary surgery proceed in close consultation with an endocrinologist.
With a complete diagnosis in hand, Shona did not expect to have any difficulty arranging the recommended surgery on an emergency basis in Ontario. But the Ontario neurosurgeon whom she saw upon her return on June 23, 2005 refused to schedule surgery based on the Mayo Clinic diagnosis. He cited migraine headaches as a more likely explanation for her vision loss. He thought it probable, however, that she had a craniopharyngioma—a slow-growing type of tumour—and recommended further testing and specialist consultations in Ontario.
Shona attempted to comply with the neurosurgeon's recommendations; however, the testing and consultations would have taken at least a month. Weeks went by without any appointments being scheduled for tests. Shona was concerned that the Ontario neurosurgeon might still refuse to schedule surgery, no matter what the other specialists said. After all, he had already rejected the opinion of the world-renowned Mayo Clinic.
Repeat visual testing conducted on July 7, 2005 showed that her vision had continued to deteriorate. The optometrist advised her that the test results were consistent with the diagnosis from the Mayo Clinic. The optometrist also recommended that she undergo surgery immediately.
Shona made concerted efforts to see yet another neurosurgeon in Ontario for a third surgeon’s opinion, but to no avail. She realized that she had no alternative but to return to the Mayo Clinic for surgery. She simply could not afford to lose her eyesight.
Shona reluctantly left her family and friends once again to return to Arizona, travelling alone and scared with her visual handicap. The Arizona neurosurgeon operated to remove the Rathke's cleft cyst on August 1, 2005 in close consultation with the Mayo Clinic endocrinologist. Her vision was fully restored within 10 days of the surgery. A post-operative MRI and visual field testing confirmed that it had been necessary to remove the cyst to restore Shona's vision.
(John Carpay and Karen Selick)