by Neil Bauman, Ph.D.
A man asked:
A while ago a CT scan revealed I had a cholesteatoma in my left ear. I had the chance to be treated by two ENTs, but they had different takes on it. The first doctor, after seeing the scan results, immediately concluded that I needed surgery to remove it. The second doctor took me to the hospital where he worked (after seeing the scan) and took some samples (i.e., removed the part that’s anterior of the ear drum and took it for further testing.
After the results of the biopsy came in, this doctor told me that it’s not a tumor, and there was no need for surgery at this time—that I just needed to go back every 3 months for follow-up. He cleaned up the anterior part of the cholesteatoma though.
After evaluating the output from the two doctors, I decided that surgery was not necessary, so I cancelled the surgery the first doctor had scheduled. I mean, why should I suffer more hearing loss (because the first doctor told me my ear drum would be taken out during the operation) when the operation was not even necessary? At least, that is what I thought at the time.
Soon after, I went to Taiwan for a vacation (where I came from originally). Because I still had some concern about my ear, I went to a hospital and saw a famous Taiwanese otologist. I had only brought the documented report, not the scanned photos with me. Based on my description and the document (from the doctor who said no surgery was needed), the otologist said I needed the surgery because I had a cholesteatoma. He said if I don’t do anything it may eat up the nearby nerves and even damage my brain.
By the time I had the CT scan, the cholesteatoma had already eaten part of my ear bone. That was why I felt pain and had some hearing problems and had gone to the doctor in the first place.
Right now I am confused as to who I should listen to. As it stands now, its two doctors for the surgery and one against it. However, the one that said no to surgery did the most detailed examination. What’s your view on my situation? Any suggestions based on what I’ve described here? It sounds serious to me.
Cholesteatomas [koe-less-tee-ah-TOE-mahs] are a mouthful to pronounce for sure. They are not tumors. Rather, cholesteatomas are cysts that typically form in the middle ear and keep on growing. Although they are not cancerous, the fact they keep on growing makes them bad.
I like to think of cholesteatomas as an “acid” that slowly “eats” (destroys) everything they come in contact with until the day you die, or they are taken out.
Thus, I think the real question is not whether you need the surgery or not, but when—now or later.
As I see it, two doctors essentially said, “It’s a cholesteatoma and needs to come out now [before it grows any bigger and does more damage, and while it is still small enough that I can get it all before it gets into your nerves and brain]”, while the other doctor said, “Let’s wait awhile and see whether it will grow bigger [and if it gets bigger I’ll take it out].
Personally, I’d side with the 2 doctors and have the operation now. Remember, one is an otologist and that counts for a lot in my opinion.
The reason I say go for the surgery now is because cholesteatomas grow and cause more and more damage as they get larger. This means if you wait, you’ll need more extensive surgery than if you have the surgery now.
This more extensive surgery may affect other things such as your facial nerve. For example, the lady who sat behind me in church had a cholesteatoma taken out. Unfortunately, the doctors had to cut her facial nerve in the process, so one side of her face was paralyzed. Hopefully, by doing it sooner, you can avoid that.
As I see it, the basic down side to having the surgery now is that you will lose much or all of your hearing on that side. So if you wait, you may have some more months (years?) of hearing on that side before you really need the surgery.
In spite of that, as a hard of hearing person, if I had a cholesteatoma, I think I’d have the surgery immediately to minimize the ultimate damage to my ear. I’d sacrifice some hearing now in order to get all the cholesteatoma before it spreads and causes further damage.
Incidentally, even if you lose all hearing on that side (because the middle ear is taken out) there are two special hearing aids that can bypass your middle ear and still let you hear because your inner ear on that side would still be good. One is the TransEar (a bone conduction hearing aid that looks like a small in-the-ear hearing aid, and the other is the BAHA (bone-anchored hearing aid).
Even if your inner ear was affected, these above two aids could pipe the sound to your good ear so you’d still be able to hear from your deaf side. Thus you have some options open to you no matter what happens.