Tuesday, September 10, 2019

Another Serious Medical Condition To Deal With: Cholesteotoma

adult with a blocked ear
Interior image showing initial stages of cholesteotoma in an adult.  Ultimately, the tiny ear bones are themselves destroyed as growth of the cyst continues - and if it breaks through the skull one can face swelling of the brain, meningitis.

 In the otologist's (ear specialist surgeon's) office 4 weeks ago, the news was delivered in totally unemotional tone as one would expect from the medical professional: "We can probably control this using non-surgical methods. But if a CT-scan shows it eating into the tegmen, e.g.
Image result for tegmen, ear
Then it can also go through the skull and eat into the brain. So we would have to operate, or you die."

The words almost sounded as if they could have come from a sci-fi horror script, but the issue was not one of horror or fantasy but quite real.  A CT-scan done a month earlier confirmed the identity of the dark (airless) space displayed on his illuminated monitor. The space indicated a massive cyst growing inside my ear possibly for years.  According to one definition from a medical website:

"Cholesteatoma is a skin-lined cyst that begins at the margin of the eardrum and invades the middle ear and mastoid (arrow). This photograph shows a typical cholesteatoma that has eaten into the bone, wrapped around the incus (hearing bone), and collected layers of dead skin. The cholesteatoma has grown to fill the mastoid, and is much larger than what is seen here.
Cholesteatoma grows aggressively. Because it retains bacteria, it is a commonly becomes infected. This infection may not go away until the cholesteatoma is removed.

Cholesteatoma has the capacity to eat away bone. Bone erosion can lead to hearing loss by destroying the small hearing bones (malleus, incus, stapes) that carry sound in the middle ear.."

Of course, I'd earlier noted my significant loss of memory following three surgeries - and general anesthesia administrations-   in 13 months, e.g.

Dealing With Memory Loss After General Anesthesia

So, as I told the specialist, though surgery was the only way to medically solve the cholesteotoma problem, I wanted to postpone such an intervention as long as possible- just as I want to postpone hormone therapy for the prostate cancer as long as possible.  He agreed with the non-surgical approach, and admitted that "most surgeons don't really think about memory loss in patients, they just want to do the surgery"   Which was a forthright admission, but he said he could work with me on the less aggressive methods, provided I  get a CT-scan every 6 months to monitor the spread of the cyst.  Especially whether it was advancing through the skull, a red alert situation to be sure.

Why wait when it can only get worse?  Apart from more memory loss, which could have me at the level of an early stage Alzheimer's patient, the surgery itself is tricky.  In the effort to remove the cyst, there are often competing objectives, i.e preserving hearing vs. facial nerve damage and other possible complications including permanent vertigo and possible tinnitus.  Some of these risks are low to be sure, but they exist and when they do occur are catastrophic to the patient. Also, two surgeries are often needed - each one going up to 3 hours. The first is to remove the cholesteotoma (as far as possible),  the second some months after is to repair the damaged inner ear bones (malleus, incus, stapes) or introduce "prosthetic" ones in their place.   There is no assurance at all of preserving hearing, or of escaping further surgeries. Or serious complications, side effects.

At the time he explained all this he also did an ear exam and found the existing cyst full of pus, for which he prescribed antibiotic ear drops (ciproflaxin).  These to be administered at the rate of 6 drops into the right ear, twice daily for a month.  The prescription (involving five refills) sounded excessive, but as Janice - a former medical specialist - told me, he would not advise this course of treatment if he didn't believe it was needed.

And as he also noted, the key to avoiding surgery was to have a "dry" cholesteotoma, not one "wet" with infection or pus. In the latter case the cyst can spread much more rapidly and the risk is eating into the tegmen, and skull.  And well, then the grim reaper cometh.

How common is this condition? According to one medical website (WebMD) the frequency is about 9 in every 100,000.   According to the Mt. Sinai website, explaining one possible mode of onset:

"You get an ear infection or injury. Sometimes after an operation on your ear, a cold, or an allergy, your Eustachian tube doesn't work normally. A vacuum is created in your middle ear, which sucks in your ear drum, making a sac -- the perfect place for skin cells to collect. Cholesteatomas caused by ear infections are the most common kind."

The allergy aspect was the one most applicable to me.  While living in Barbados after my Peace Corps service, and marrying Janice I became susceptible- sensitive  to cane arrows (from each year's sugar cane crop) inciting allergies so bad I had to live on Benadryl during the days.  Over years of these allergies my eustachian tube ceased to work normally. Add in serious colds, respiratory infections, H3N2 and H1N1 flu bouts in the 1990s and the stage was set for a cholesteotoma.

So now, all  I can do is watch and wait - as in the case of the cancer, and hope the "red zone" doesn't strike too quickly. (The "red zone" used in one recent AARP medical piece, referring to the stage when the person experiences a rapid descent into  medical catastrophe with everything failing, going wrong at once.) In the red zone one's only practical choice is to accept the end, and not fight it with extraneous measures, analogous to what my youngest brother Mike did last year - in deciding not to get chemo or radiation for stage IV liver cancer.. Besides, as I told Janice, it's not how much time one has left but what one does with the time available.

See also:

The Insanity Of Pursuing Longevity and Questionabl...


No comments: