Cholesteatoma, need a "special" ENT?

[messedupears]

We recently moved to Florida, & I just saw my new ENT yesterday. I had two surgeries done so far for a cholesteatoma. I was told there where only TWO ENT's in the whole state of Florida that is able to perform these surgeries, which I find very hard to believe! I had to drive almost two hrs to see this one, since he was recommended by my old ENT in our previous state...only because my old doc went to school with him.

Is there a "special" ENT I need to see in order to treat my ear, & perform another surgery (mastoidectomy)? I really need to find another doc that is closer. Thank you!

[OHNS2010]

Hi,

I personally, as an ENT surgeon feel, surgery is not required until you have some symptoms suggestive of intra/extra cranial complications and your CT scans detects any bony defects. But a regular check up with an ENT specialist is mandatory.

Regards
OHNS2010

[messedupears]

Unfortunately, the only way to be certain that the growth is gone is surgery. They can't see through my ear drum, since it was grafted & made thicker. A CAT scan could be done, but, the ENT told me it's hard to tell any new growth versus gray matter since it looks similar. I haven't researched the reliability of CAT scans yet, so that could be wrong.

So, the only alternative is surgery, where they first go through the ear canal to look around. If new growth is found, then they go behind your ear instead & operate more. That was the case last year.

My old ENT doc said he tried to get all the growth out....but even if a little is left behind, it will come back.

If I wait for symptoms to reappear, then I'm asking for trouble. I had this growth for quite a while & other docs always said it was an outer ear infection. Then, I started bleeding from that ear. Luckily at the time, I recently switched to a family doc that was highly recommended. He looked in my ear & was the first one to say it was a growth. If it weren't for him, I could of ended up with a serious complication, since any other doc misdiagnosed it!

It's a stubborn case & I lost a good about of hearing in that ear. It's also genetic. My Dad had the same thing. Faulty Eustachian tubes is what causes it I believe. Anyway, I just want the growth all gone! Without having to take the whole family on a road trip! :-)

[OHNS2010]

Hi,

Thats nice to hear from you, be positive. If the previous work is done properly I do not think it requires any more surgery. You do not have any symptoms of complications of cholesteatoma. Cheer up! Visit your doctor.

All the best.

Regards
OHNS2010

[messedupears]

Third time trying to post this. From what I understand, a neurotologist deals with issues with brain matter. I will see an ENT in my area that handles Cholesteatomas. I'm due for my year after mastoidectomy surgery. Hopefully, they won't find any new growth like last year. This will be surgery number three. If any new growth is found, & it is close to brain matter and/or complicated, I'm sure the ENT will send me to an neurotologist.

This thread is about cholestetomas....hence my ear complaint. I like to learn things for myself so I'm not driving more than two hours away with all my kids to see a sub-specialist that is not necessary. I'm glad I didn't just blindly follow that receptionist's advice, since obviously, she doesn't know what she's talking about. I found more than two Neurotologists in Florida!!! Ugh.

[OHNS2010]

Hi,

First, get your self evaluated from an ENT specialist near to your house. Then find out whether you really require any surgery as of now. You have not mentioned any ear complaints in your post. So go ahead! Get an opinion from your doctor. Do not get upset or confused, things like this will happen sometimes.

All the best.

Regards
OHNS2010

[messedupears]

Thanks! I will look into a Neurotologist. That's the term the receptionist was trying to say. Mine is just a run of the mill growth, so I'm confused as to why I would need a neurotologist, when I can find ENT's closer to my area that treat Cholesteatoma.

[ENTMD]

Florida....ugh.

Those statements are somewhat bewildering.  Cholesteatoma/mastoid surgery should be fundamental stuff to an ENT specialist.  Now yes, there are circumstances that might require more specialization -- dural tear/CSF leak, semicircular canal fistula, unusual facial nerve course, etc., but that's the exception.  At any rate, the uber-ear specialists are called Neurotologists.  I suppose if you're in Florida then that's who you need to find...For sure the major academic centers have these.

Good luck!