A Pained Life: Starting at the Top

By Carol Levy, Columnist

I hear a lot of people say, “My doc is the best.”

It's important to believe that. But sometimes it is better to save the best for last.

I have trigeminal neuralgia, a painful condition that affects the trigeminal nerve around the eye, and was referred to my neuro-ophthalmologist -- let’s call him Dr. Smithson -- by a vascular specialist I had been seeing.

I had no idea that Dr. Smithson was one of the co-founders of the specialty of neuro-ophthalmology.  He was wonderful, not only terrific in his medicine, but a really nice and caring person. I was lucky to have been referred to him.

After two neurosurgeries, one that worked and one that resulted in devastating side effects, Dr. Smithson sent me to Dr. Marks in Pittsburgh for a specialized surgery that was named after him.

Unfortunately, Dr. Marks not only was unsuccessful, but the surgery left me with additional debilitating side effects.

After that, I was sent to California, where Dr. Kaplan did one surgery, and a year later Dr. Yee did another.

I did not know at the time that these doctors were the cream of the crop. All had their names in major neurosurgical textbooks.

From the outside, this may sound good. But from the inside, there was a problem. I was caught in a circle of specialists. I felt none of them could look outside of the circle and see things from a different perspective. I needed fresh eyes, so I went to see a neurologist at my local hospital.

“I came to see you because I need to have someone outside of the group I have been with take a fresh look. Maybe you can see or suggest something they have not thought of,” I told the doctor.

“That’s a good idea,” he said. After an examination, he told me, “I do have some ideas. I am thinking of prescribing a medication, but I want to look into it more. Come back in a month.”

Wow! Maybe somebody has something else to offer. I left the office filled with hope.

A month later I returned to his office, filled with anticipation. The neurologist came into the room and quickly burst my bubble.

“I talked to Dr. Smithson. He said what I wanted to prescribe is not a good idea,” he said.

It was just a medication. The worst that could happen was that it wouldn't work. It was no risk to this doctor, or to me, to at least try it. But Dr. Smithson’s name and reputation outranked everything else.

My doctors are the best. There is no argument there. But I wish I had started with the schnooks. Then there would have been no place to go but up!

My pedigree of the best, the brightest, and the most well-known has hurt me. I also have to explain that one doctor was behind all of these recommendations, so I don’t come off as a “doctor shopper.”

It is a conundrum. Is it worth going to the “lower level” so you have the top doctors in waiting? Or do you go to the top and then have no other options?

Maybe if I started in the other direction, I would have been just as disappointed – and wished I had started at the top.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.