My mother started slowly going blind about two years ago. Her eye doctor found cataracts, but after her surgery to remove them, her vision didn't improve much. She's been taking a prescription medication that's known to cause vision problems, so she figured it was the meds, but during her post-surgical eye exam, her optometrist suspected something else: a pituitary tumor.

But, because Dr. Wess is "only" an optometrist (never mind that the guy's certified in treating ocular disease and he's been an eye doctor for 25 years) the insurance company wouldn't approve an MRI or blood tests for her. So, Dr. Wess wrote a letter explaining his concerns to her regular physician ... who then sat on the letter for a month.

Her doctor finally got around to ordering the MRI for my mother two weeks ago. The MRI showed a great big pituitary tumor that's putting pressure on both optic nerves and has invaded her cavernous sinuses. She needed surgery months ago. The doctor started acting worried and indignant, saying my mother should have "come in sooner to have this checked out." She not-so-gently reminded him that she did come in earlier, but he told her pituitary tumors are "rare" and probably nothing to be concerned about.

The thing is, pituitary tumors aren't rare -- autopsies and x-ray and MRI data indicate that slightly over 20% of the adult human population has a pituitary tumor at any given time. Many of the people with these tumors of course don't realize they've got one.

Because of the pituitary gland's function, such tumors can oversecrete (or impair the gland so it undersecretes) various hormones, such as:

These imbalanced hormones in turn can cause a boggling array of possible symptoms:

Sometimes tumor sufferers have several of the above symptoms; sometimes they just have one. Most people wouldn't readily associate depression or infertility with a tumor. And some benign, nonsecreting tumors just sit there quietly, causing no symptoms whatsoever.

Nonsecreting tumors can grow large, putting pressure on one or both optic nerves and/or the brain, causing pain, blindness, and other neurologic symptoms. Such pressure can cause permanent nerve damage if not relieved in time. They can break into the sinus cavities, causing pain and sparking secondary infections. And, as with my mother's case, they can wrap themselves around the carotid artery, making surgery dangerous and complete removal difficult if not impossible.

Pituitary tumors are sometimes secondary metastases from primary cancers elsewhere, often from the lung. These metastatic tumors often grow large and ropy, but don't often secrete hormones. They are most troublesome, of course, because they indicate serious cancer elsewhere.

Tumors are difficult to diagnose when they're small, and even small tumors can dangerously overproduce hormones. There have been cases where surgeons have gone in knowing there's a tumor and have been unable to find the tiny pinhead that's been causing problems. MRI scans will display large tumors, but difficult-to-interpret blood tests are needed to diagnose smaller ones.

To make sure you get competent medical assistance, it's important to go to a hospital with a neuroendocrine unit or a pituitary testing facility; preferably the hospital should have both.

Surgery is most often used to remove the tumors; the surgeon goes in through the nose and breaks through a sinus to get to the pituitary, which lies under the brain. Sometimes the surgeon must go in through the upper lip.

Tumors that can't be removed surgically can be destroyed with radiation therapy (high-dose x-rays/proton beams or gamma knife irradiation). The symptoms can be alleviated with drugs that block the pituitary from producing excess hormones. Some of these drugs can also shrink the tumors themselves.

I don't yet know what my mother's prognosis is, or whether she'll get her vision back. She says she'll be happy if it just doesn't get any worse (she can't read or drive anymore, but she can navigate around her house). The surgeon suspects the tumor is a metastasis, which is a much graver concern.


May 15, 2003 update: My mother's doctors, after reviewing her tests, have decided it's a benign tumor (a prolactinoma). They've also decided to delay surgery and put her on Parlodel (Bromocriptine), a drug that's had success shrinking such tumors. If the drug works as expected, she won't need surgery at all. They will wait and see how the drug does over the next couple of months. She will have to take the medication for the rest of her life, and it can cause side effects like severe nausea, but given her age it's better than putting her through surgery again.

June 15, 2003 update: The Parlodel seems to be working; my mother reports that her eyesight is getting better, bit by bit, though the doctors didn't give her much hope of this happening. She was able to see well enough to finish a novel last week, the first in many months.

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