My brain tumor

brain tumor

I first noticed difficulty with my vision in the early spring of 2000. Sitting at Little League Games I often had trouble focusing on the action. Over time I realized that the problem was intermittent double vision.

As the weeks went by, the double vision got worse. My optometrist suggested that adjusting my contact lens prescription; that didn’t seem to work. Over time it became apparent to me, despite my vigorous attempts to pretend otherwise, that this was not a problem with my eyes, but almost certainly a problem inside my head. I made an appointment a highly regarded neuro-ophthalmologist, a hospital colleague.

I read up on double vision. There were three principle causes of double vision in otherwise healthy patients: idiopathic, which is the technical term for unknown cause; multiple sclerosis, and, least likely, a brain tumor. I convinced myself that I had idiopathic double vision, distressing because there was not cure, but certainly better than having multiple sclerosis or a brain tumor.

I arrived for my appointment on time. I had to spend an hour and a half in the waiting room because the doctor was “running behind,” but, as an obstetrician, I’m hardly in a position to complain about waiting. Finally, the doctor flung open the exam room door and swept into the room.

“I can’t see you today,” he announced. “My secretary is an idiot. You have double vision and double vision requires an extra long appointment. She booked you for a regular appointment. You’ll have to come back another time when I have more time to see you.”

“I don’t think so,” I responded. “I’m here now and you can start the exam in the time we have available. If we need more time, I’ll make another appointment.”

The doctor looked irritated, but after learning I was a colleague of his, he seemed mollified. From that point forward, he was on his very best behavior. Considering how he treated me, I feel very sorry for his patients who are not doctors.

The doctor did a few simple tests, asked me to look up and down, side to side and follow his finger. In less than 5 minutes he announced findings.

“You don’t have to come back,” he said. “I already know what you have. You have a sixth nerve palsy. The nerve that controls one of the muscles of your eye (the sixth cranial nerve) is not working. You can’t move your left eye to the left, that’s why you have double vision, and why it happens intermittently. You only get double vision when looking to the left.”

“There are three main causes of double vision,” he continued. “Idiopathic, but I don’t think it’s that; multiple sclerosis, but your story is wrong for multiple sclerosis; and brain tumor. You must have a brain tumor. I’m sure of it.”

That was it. That was how he broke the diagnosis. I had known about the possibility, of course, but I was stunned nevertheless.

“How are we going to find out whether I really do have a brain tumor?” I asked.
“Oh, you have a brain tumor,” he responded emphatically. “We need to get an MRI to find out how big it is and where it is located. I suspect that it’s benign, and based on its appearance on the scan, we should be able to confirm that.”

He continued, “You can have an MRI on Monday, then you can come back on the following Monday and I’ll tell you what it showed.”

“Wait a minute,” I was beginning to recover from the shock. “What do you mean that I find out the results the following Monday? The radiologist can see the findings during the scan itself. Why can’t you get the results from the radiologist by phone on Monday?”

“You know those radiologists,” he confided. “They’re all foreigners, Pakistanis, Indians; who can understand what they say? I can’t, so I’ll just wait for them to write me a letter.”

Even in my shocked state, I recognized that it was pointless to try to deal with this doctor. I determined to deal with the radiologists directly.

I told my husband what had happened. I related the doctor’s comments about the foreign radiologists. He was appalled by the blatant racism, but then he smiled.

“As it happens, I know those radiologists. I am one of their lawyers. My contact person in the group is Dr. Z, He’s Pakistani, but I have no trouble understanding him. He speaks better English than we do.”

My husband called Dr. Z who assured him that he would come down and read my scan after it was done, and tell us the results immediately.

On the day of the scan, as I slid out of the MRI machine, a radiologist approached and stuck out his hand.

“Hi, I’m Dr. Z and I’ve already looked at your scan. Come out to the computer and I will show you what I found.”

He was warm and engaging. He spoke perfect English with a slight British accent. I had no trouble understanding him. I followed him to a large computer screen.
“Good news,” he said, with a smile. “Your brain tumor is benign.”

The room started to spin. I asked for a chair and sat down with a thump.

“I can’t have a brain tumor,” I said stupidly. “My son is having his Bar Mitzvah in two months and now is not a good time.”

He looked at me kindly. “I’m not sure what that is, but it doesn’t prevent you from having a brain tumor. But look at the scan. The tumor is small and well contained. It looks like a meningioma, a very common type of benign tumor. See how it is pressing on the sixth nerve. That’s why you have double vision. Don’t worry, though, a neurosurgeon will be able to remove it, and you’ll be fine. They typically don’t come back.”

I wasn’t counting on brain surgery, and this did not seem like good news to me. However, when I realized that Dr. Z was genuinely happy to be sharing this news, I understood that he had worried that the scan might have showed something far worse.

Later that afternoon, I got a call from the neuro-ophthalmologist. Dr. Z had informed him that I already knew the results of the scan. I’m not sure why he called since he did not impart any helpful information.

“I’ve looked at the film,” he reported, “and you have a small tumor that is almost certainly benign. It’s only a half inch across, but it is located deep inside your brain and pressing on lots of important structures.”

Then he added: “I’d hate to be the neurosurgeon doing your case. That sucker is sitting in a lake of blood. The surgery’s going to be a mess.”

To be continued

This piece originally appeared on Open Salon in October 2008.

200 Responses to “My brain tumor”

  1. cinnamon
    March 28, 2014 at 6:46 pm #

    i have double vision when i look to the left. my eye dr. has to do more research on it. he has not seen this . i am scared of a tumor. i know that i had strained my eyes when i was looking at something very close for a couple of months.i could feel the strain on my eyes and almost was crossed when i was looking closely, mostly with my contacts which i cant see close and need reading glasses to begin with. i guess its try what they say. if you keep making faces your face will stay that way. right now it is the eyes not the face. but what can be done. i have no insurance and now this just knocked driving out of my job oppurtunities. help. there has to be excerses for it

  2. apple
    August 30, 2013 at 10:52 am #

    Dr. Tuteur.

    Congratulations on your succesful recovery. I was shcoked at the speed in which you were diagnosed and treated. I live in Canada and the process would take six months to a year, if you could get through the door of the first specialist.

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