You’ve heard the old joke, “I’ve got good news and I’ve got bad news,” right? Well, that actually happened to me.
Back in 2009, when I had my first vertigo attack, I complained to my doctor of fullness in my ears. I’d seen an internist in my doctor’s office, and sure enough, I did have full ears before the vertigo attack. After the attack, I didn’t see my doctor again, but since I still felt as if my ears were full, we thought I needed a myringotomy.
I had an appointment with my ENT (Ear, Nose & Throat) doctor on a Wednesday morning. I expected her to punch a hole in my eardrum and be done with it. When I sat down in the chair and she saw my ear, she immediately started to mutter and grumble. I no longer had fluid in my ears. Nuts. She sent me down the hall to the audiologist.
Well, I explained I couldn’t hear anything out of my right ear. The hearing test confirmed it. Perfect hearing in my left ear. Zero hearing in my right ear. We discussed this during my hearing test. I wasn’t worried. I figured it wasn’t permanent.
Except it was. When I spoke with the ENT, she explained that sudden sensorineural hearing loss (SSHL) is almost always permanent. Since it had been three weeks, I could try taking steroids in the form of prednisone. They had a maybe 10-20% chance of working. Did I want to try?
Of course I did. I know the side effects of prednisone. In the past, I’ve gained water weight, had some mania, and when I tapered off, had a little sadness when the euphoria wore off. I was willing to chance it.
When you have sudden hearing loss, SSHL, you’re supposed to get an MRI. That’s the standard of care. So Phyllis, my ENT’s assistant, moved heaven and earth, and got me an appointment for an MRI the next day, Thursday, at 3pm.
I’m on prednisone, so I’m happy and feeling no pain in my sprained ankle My ankle wasn’t going to get better, but I wasn’t feeling it! I’d been drinking water to manage my vertigo, but I tried to reduce in preparation for the MRI.
Everyone told me the MRI should take about 45 minutes. I was ready. I knew there would be two parts to the test, one before the dye, and one after. Total of 45 minutes? Piece of cake.
MRIs are supposed to be noisy and irritating. I find them mildly boring. I often fall asleep. Maybe because I only hear out of one ear?
I don’t remember if I fell asleep that day. I might have. I do remember wondering how long this MRI was going to take.
At one point, the MRI tech said, “I need to run a few more scans. Please stay still.” Okay, I can do that. “Just a few more scans, and then I’ll add the dye.” Okay. “Just a few more scans.” Okay, already.
Finally, she came in and gave me the intravenous dye. It was only supposed to be another five minutes after the dye. “I need to run more scans. Please stay still.” “Just a few more scans. Please stay still.”
I’ve heard this before. She had to run many more scans. My 45-minute MRI took 90 minutes. I suspect something is wrong.
I asked how it looked. The MRI techs are very well trained. She said, “You have big brains!” I laughed, and left.
A friend who knows about radiology, but is not a doctor, called that night. “How did the test go?”
“It went well,” I replied.
“So you were out in 45 minutes?” she asked.
See, this is when I really knew something was wrong. “Nope, it took me an hour and a half.”
Silence on her end. “Well, I’m sure everything is fine.” She had that tone in her voice that people use when they don’t know what to say. The tone where they would like to say, “Oh shoot. Now what do I say?” That tone.
There are signs all over the radiology department that say it takes 48 hours to read an MRI and not to expect any report from your scans before then. My MRI was 3pm on a Thursday afternoon. I figured I’d hear from my doctor on Monday.
My ENT called me at 4pm on Friday. This is less than 24 hours from the time I left after my MRI. “I’ve got good news and I’ve got bad news. Which one would you like to hear first?”
“The good news.”
“You don’t have brain cancer and you don’t have Parkinson’s disease.”
“Excellent.” I thought to myself, ‘I will live through whatever this is.’
“Now for the bad news. You had an inner ear hemorrhage. That’s what is causing your vertigo. And, it’s what caused your hearing loss. And, now for the really bad news. You have a benign brain tumor.”
“Okay. Will this tumor make me smarter?”
There was a long pause.
“Um, no.” My ENT sounded puzzled. She didn’t know my sense of humor.
“Okay, then I don’t need it. Do I need a neurologist or a neurosurgeon?”
“A neurologist first. Then you decide what to do.”
The problem is not that I have a brain tumor. Well, it’s kind of a problem. The real problem is that I don’t have enough information, namely the proper name. The proper name is meningioma. If you search on meningioma on a Friday afternoon, you can learn enough to not be freaked. But, if you search on “benign brain tumor” on a Friday afternoon, all you learn is scary stuff. Extremely scary stuff.
This is what doctors should not say to patients ever, never mind on a Friday afternoon. Doctors should never use euphemisms. Doctors must use correct terminology.
If you are a patient, make sure you ask for the proper names of things. When I searched for “inner ear hemorrhage”, I found intralabyrinthine hemorrhage right away, so I knew what the proper name was. But, when I searched for benign brain tumor, there are too many kinds of brain tumors.
I have a meningioma on my right frontal lobe. It’s about an inch in diameter, on my dura, about in the middle of my right forehead. It’s not growing, so I’m not even considering surgery. I mean, really–who needs a hole in her head?
It means I need more MRIs. It also means that every time I fall down and need an MRI or a CT scan, especially somewhere where I’m a stranger and I forget to tell them I have a brain tumor, they don’t know how to break the news to me. “Oh, I forgot to tell you, I have a meningioma, right here,” and I point to my forehead. They are quite relieved that I know.
The byword with this brain tumor is “watch and wait.” Get MRIs, see if the darn thing grows, and as long as it doesn’t, do nothing. I get no airline points for my MRI visits.
Because it was a Friday afternoon, I could not discover what kind of a brain tumor I had until Monday. I would not wish that kind of a weekend on anyone.
When I made an appointment with a neurologist, I asked for one with a sense of humor. I figure if I’m going to have him for a while, I want one who has a shot of understanding my sense of humor. He does.
Every time I have a strange symptom–and, I have plenty–we blame it on the brain tumor. “Well, what do you expect of a woman with a brain tumor?” Or, we blame it on the vertigo. Every so often, we blame it on me, just being dumb, “Operator error.” But I like to blame it on the brain tumor.
If you have a condition, make sure you get the proper name. With the proper name, you can do the research. Without the proper name, you flail.
Oh, and now that my ENT knows me, she enjoys my sense of humor and she shows me that she has one, too!