new to this

July 21, 2006

After lo these many years of research and reading (5 to be exact), the information suggests that the c-toma itself is not congenital but the formation of the body parts which can lead to c-toma is. For example, I have had ear problems all my life because of poor eustachian tubes but no c-toma. My son, also with eustachian tube problems, developed c-toma.

Re: New to this

Thanks for all the replies! I didn't think anyone would read through

the novella I came up with! The doc had Marine Corps training.

Whether he was a doc in the Corps I have no idea, he just has a lot

of certificates from the Corps on his wall. The tattoo ink is

plausible in older inks but mine are newer (within the last 8 years)

& most good artists will not use inks with metal bits in them. I had

heard of this before I started getting tattoos. I know what kind of

ink they are using on me before they do it. But thanks for the heads

up on that! From what I've researched cholesteatomas can be

congenital or aquired. Doc said that the size, the kind of issues

I've had with the whole ear/nose/throat plumbing system since birth,

the fact that my tonsils had to be taken out because they were

blocking my eustachian tubes pretty much guarantees they are

congential. And my mum had military overseas shots during her first

month or so of being pregnant with me (she didn't know she was

pregnant) & I think I read somewhere that one of those shots has been

linked to poor developement of the areas I have problems with.

(Although that could have just been us telling stories to one

another. We like to make up cockamany reasons why things happen. It

was probably us making things up so no one take my word on that.)

After posting, I went to my insurance website & found listings for

Otologists. I had no idea there were such things, just ENT docs. An

ENT doc took out my tonsils so I thought they were supposed to do all

the surgeries. I'm going to try one of them. Unfortunately the

diagnosing ENT is also registered as an Otologist & in the same

office. I hope he doesn't recognize me or the one I see refers me

back to him. So I've got to call to make the appointment. Thanks

for all the recommendations!

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July 21, 2006

Semantics & all, but if the body parts aren't working properly from birth because of poor development in the womb, it'd be a congenital problem, neh? My e-tubes were blocked by my tonsils for many years. I don't remember from itty childhood, but preteen years & such my tonsils were always the size of golf balls. Too bad when I got the tonsils taken out the e-tubes didn't suck the tumor down! What kind of issues do you have with your e-tubes? How about your son's e-tube problems? What has his experience been like having the c-toma?

--------- Re: New to this

Thanks for all the replies! I didn't think anyone would read through the novella I came up with! The doc had Marine Corps training. Whether he was a doc in the Corps I have no idea, he just has a lot of certificates from the Corps on his wall. The tattoo ink is plausible in older inks but mine are newer (within the last 8 years) & most good artists will not use inks with metal bits in them. I had heard of this before I started getting tattoos. I know what kind of ink they are using on me before they do it. But thanks for the heads up on that! From what I've researched cholesteatomas can be congenital or aquired. Doc said that the size, the kind of issues I've had with the whole ear/nose/throat plumbing system since birth, the fact that my tonsils had to be taken out because they were blocking my eustachian tubes pretty much guarantees they are congential. And my mum had military overseas shots during her first month o

r so of being pregnant with me (she didn't know she was pregnant) & I think I read somewhere that one of those shots has been linked to poor developement of the areas I have problems with. (Although that could have just been us telling stories to one another. We like to make up cockamany reasons why things happen. It was probably us making things up so no one take my word on that.) After posting, I went to my insurance website & found listings for Otologists. I had no idea there were such things, just ENT docs. An ENT doc took out my tonsils so I thought they were supposed to do all the surgeries. I'm going to try one of them. Unfortunately the diagnosing ENT is also registered as an Otologist & in the same office. I hope he doesn't recognize me or the one I see refers me back to him. So I've got to call to make the appointment. Thanks for all the recommendations!

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

July 21, 2006

from what I have read and from what I have learned from our doctor, there are two types of Cholesteatomas. Congenital and acquired.

Acquired means that there is usually some sort of dedeformity with your ear, tubes, inner ear, ect. Most of the time these can fully be taken out as they come out in one clump but they are prone to grow back because the deformity in the ear is not always able to be taken care of, hence the regrowth.

Congenital means that there was something in the ear from before you were born (sort of like a grain of sand makes a pearl) that grows with you and you are able to discover when it becomes big enough to make trouble with hearing or cause other problems. These are harder to take out because they often peel like an onion and break away. This type usually only comes back if a grain of it is left in the ear and it regrows.

I am by NO means an expert, but the explanation our doc gave us when we were first in there about a year ago for my son made sense to me...

Joycelyn

July 21, 2006

My issues have been a lifetime of ear infections, even occasionally at the age of 55, Eardrum bursting when flying, ear fullness and pain and countless visits to an ENT. My son has had 5 surgeries. First two to remove c-toma by ENT and rebuild eardrum. 2 more by Otologists to implant prosthesis and rebuild eardrum in Nashville. Last one by Otologist at U of Fl. to again rebuild eardrum and implant another prosthesis. He lost all hearing bones initially except stapes footplate. All the docs say the eardrum thing is poor e-tubes. He's now 20 and makes his own decisions about surgery. He's weary now (so am I) and says no more. He has no improvement in his hearing and at the last look there was a small pin size hole in the eardrum. He always asks the doc (since teaching hospitals tend to keep up with the latest developments) if there is anything new being developed for the e-tubes.

Re: Re: New to this