New Symptoms

Monday morning I visited with my neurosurgeon and had a thorough discussion about my recent MRI. I spent more than an hour with him going over every detail. He is a terrific doctor. When you are with him you are the only thing that matters in his world.

During the appointment I found my own MRI-reading skills called into question. It seems doctors are better at interpreting scans than patients. Imagine that. For example, I pointed to a suspicious white smear where my tumor had been.

I said, “But what about this spot under the optic chiasm?”

He responded, “The optic chiasm is farther back.” He pointed. “Where you’re pointing is actually the rear of your sinus cavity. The white is excess fluid.”

“Wait. You mean snot?”

“Yes.”

With my tail between my legs, we continued.

The bad news was the tiny speck from before is still there. I thought it looked bigger, but the surgeon (as well as a neuroradiologist from Tumor Board) think it's about the same or possibly smaller. The long and short of it means the speck hasn’t done much in four months, and this is great news. The neurosurgeon’s job is to take care of the craniopharyngioma. He did that.

But I still have other troubling symptoms: intense ringing in my ears (mostly left), dull pain behind my left eye, tingly scalp and these very painful shocks in the left side of my head. The shocks were at their worst on Saturday, but they happened again Sunday and Monday. Yesterday (Tuesday) I experienced them very mildly and so far there has been just one tiny one today. The left side of my face feels numb, but I can move my facial muscles just fine.

The new MRI—while providing good news about my tumor—also opened a can of worms in another area. There is a suspicious spot in my left frontal lobe, a very distinct bright white slithery eel shape that is consistent across all my scans.

“Plaque,” he said. “Or a lesion that could be related to something like migraines or multiple sclerosis (MS).”

I said, “I had my first MRI in October because they suspected MS. They thought my eye trouble was optic neuritis, which can precede MS. The tumor showing up on the scan was a big surprise.”

“Well,” he said, “This still wouldn’t be of immediate concern unless you have symptoms like dizziness.”

“I’m dizzy or disoriented all the time,” I said. “When I rise out of my seat for applause after performances, I need to grab the music stand sometimes. Occasional dizziness is a big problem for me.”

He said, “Others have trouble with arm numbness.”

“I have that too. Right now, I can’t feel two of my fingers. That’s been an on-and-off problem for three years.”

He wrote for a long time.

I added, “And these sudden electric jolts are a recent thing. They’re extremely painful. They don’t last for more than a second, but they keep happening out of the blue and I don’t want them to get worse.”

He said, “Then you need to see a neurologist for a broader assessment. Your tumor is under control, and I don’t think a tiny speck of a benign tumor would be causing these other issues.”

My case file and all my scans have been passed on to the best neurologist in town (according to my surgeon) and I will be seeing him in the coming weeks. But if things suddenly get worse I am sure I will be seeing him in the coming minutes.

In the meantime, MJ, Noah and I are enjoying a week off with nothing but rest, which of course is the best medicine.