I have fallen into that category a few times, where, among other things, I have learned new words. The one was CSF leak. That condition now has a celebrity face to it in George Clooney.
The other was cholesteatoma, which has no celebrity presence.
Looks like something about cholesterol, doesn’t it? Many doctors have never heard of it.
Here’s one jolly definition:
“Cholesteatomas have been recognized for decades as a destructive lesion of the skull base that can erode and destroy important structures within the temporal bone. Its potential for causing central nervous system complications (eg, brain abscess, meningitis) makes it a potentially fatal lesion.”
It’s a little like a microscopic Blob, that great sci fi movie from the sixties, that eats anything in its way. The lesion is actually dead skin and cells that have clumped together because of a retracted eustachian tube. A retracted tube doesn’t allow enough air to circulate in the middle ear, and air is needed to clean out the dead skin and cells that slough off.
The tumor grows and grows. It attaches to the ossicle chain, the miracle of the 3 smallest bones in the body in the middle ear: the malleus, incus, and stapes.I have read descriptions of how they work, how they create sound for us to hear, and it still seems to be a miracle beyond belief. Think about your ear, now think about THREE BONES banging away in there: the hammer, the anvil, and the stirrup.
Once the cholesteatoma was found in my left middle year, I didn't have an option. And so I had 5-hour surgery to cut the growth out. Almost always cholesteatoma surgery means ripping out the bones of hearing with the tumor, leaving you completely deaf in that ear. Then 6 months to a year later, they go back in and try to replace the bones with prosthetic malleus, incus, and stapes, either from a cadaver, or made of titanium.
But I had a 1 in a 100,000 piece of good news: the tumor was sitting in such a way that he could cut it out and leave the ossicle chain intact.
I go once a year for a followup visit. It’s been 4 years now. It’s possible that a piece was hiding behind the bones, and will grow back. Then I will be back in surgery. It is definitely waiting for the other shoe to drop.
At least til that time, I can hear it, and the proverbial pin.
8 comments:
How marvelous our bodies are. I came to really appreciate the human body when I worked with robotics some years ago. Only now are prosthetics and robotics coming anywhere close - and only in a few areas.
Robotics-=how interesting, and I believe, rapidly developing.
Thank you for writing this informative piece. I too had a closteatoma three years ago and came away with only losing one of my three bones! In other words, I have hearing loss, but still some working ability. I am now on the path to a potential reconstruction. I have no idea if I will get my hearing back or not. But thanks for clarifying such an unknown ear problem!
Anon, I'm glad I could help. Cholesteatoma is such a rare condition, there isn't that much out there about it. Best of luck for the reconstruction.
I started a website about cholesteatoma and a twitter account. There is a yahoo group out there with tons of support. I am trying to get more awareness out there about this disease. I was diagnosed at 14. I have had 3 growths removed and 4 surgeries.
Jenni, that's terrible that you have had to have so many surgeries. What a nightmare. Hope this recent one is the last one.
I was born with one in both ears. I'm adopted from Korea and nothing was done until my adopted parents got me. I've had 6 years of speech therapy, wear aids, had 6 operations, and I need a 7th. A few weeks ago, I noticed my hearing worsening, so I went to my ear doc. My ear rejected one of the prothstetics and "spit it out". My ear doc was shocked and concluded my ears hate me and him LOL! He fished the bone out of my ear and gave it to me as an early Christmas gift haha!
I was recently diagnosed with cholesteatoma as well and wanted to ask M.A. Peel if you can let me know who you saw that has left you c-toma free for all of these years. I have seen 11 otologists so far all over the US - and maybe one was the one that worked for you. :-) Most of the patients I've talked to and stories I've heard weren't as successful as yours - so your story is inspiring and I thank you for posting it. So glad you can hear!! I am not so lucky - but I'm 54 and they're saying it was congenital -- crazy...! I have to get it out soon so would love to hear from you. Hope you are doing well!
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