Re: Prevention of cholesteatoma & reconstructive surgery

[Guest guest]

In a message dated 2/6/2005 9:09:13 AM Pacific Standard Time, conrad.crampton@... writes:

He now has had another burst eardrum in his right ear and we are

worried about the formation of cholesteatoma in his right ear. Does

anyone know of anything that can be done to help prevent the

formation of cholesteatoma? (e.g. cranial osteopathy? drugs?

homeopathy?)

Also, in the worst case scenario, what options are there for

enhancing his hearing if his right ear goes down to the same level

(or worse) as his left ear?? reconstruction/ cochlial implant /

hearing aid etc.

My son had his ctoma in the right ear and also fluid build up in the left. I understood that a plugged eustachian tube, with the ear drum not moving, and negative pressure building up, were the conditions that created an unhealthy middle ear environment and made things "ripe" for acquired ctoma to develop. Tom is right that, once a ctoma, is there, you're stuck with it unless you have surgery. But I am not convinced from my reading and doc talks that he is right that nothing can be done to make your chance of developing a new one less likely. In fact, it seems to me that I have received several suggestions from the surgeons and that all of the are aimed at getting/keeping a normal air flow into the middle ear. And the surgeon has come out of surgery as well (after we've been working on creating a healthy environment in the middle ear and talking about that with him) and said that he could tell the middle ear WAS healthier. Basically, what he saw was signs of previous infections, but NO active current infection (and, I should add, that my son never had any infection at all that was evident from the outside). He said that all pointed to the middle ear environment becoming more normal and healthy.

So, I have done everything I can to clear the fluid out the eustachian tubes and keep a normal air flow going. At the surgeon's recommendation, we had his tonsils and adenoids removed. This seems to have made the BIGGEST difference all by itself. The surgeon came out and said that Curtis had "inset" tonsils, which mean they go deeper back somehow and he said that inset tonsils a lot of times really do block the eustachian tubes. We've had very little problem with fluid build up since the tonisllectomy. We also worked with diet, cranial osteopathy including eustachian tube massage, decongests, and having e-tubes put in the ear drums (although I hesitate over this one as I was told that the more they "touch" and do stuff to the ear drum, the more likely ctoma becomes). Still, the e-tube was better than a completely blocked left ear (the good ear) and resultant poor hearing. Also, in terms of avoiding infections, anything you can do to promote overall immune health is a good thing. Curtis' left ear is now normal and healthy and, better yet, the ear drum on the right side (where we started with congenital ctoma, then got multiple acquired ctomas) is also moving normally, indicating better air flow and health on that side as well. The real test will come at his next 2nd look surgery on 3/31.

I guess I would say, since ctoma is an inexact science, I at least feel better knowing I've done everything I can to promote middle ear health and discourage ctoma development. If Tom is right and it all makes no difference, I still did my best. If our surgeon is right, then maybe we have prevented ctoma on the left side. It seems worth the effort to me.

Re: reconstruction, my son did have one done and the restored hearing was really amazing. Unfortunately, in our case, the ctoma regrew a few months later and messed it all up.

Marie

[Guest guest]

Conrad,

Our son had his surgery at 4, they assumed it was congenital. After doing

the surgery the doc could tell by looking that it was acquired. I'm not sure

what kind of biopsy they do to tell one from the other....Our surgeon said

he could tell by looking because of the shape of the ear drum and the

pockets surrounding it. The doc said that acquired are more likely to come

back because the conditions are " right " for a ctoma and it is hard to

correct those conditions. A congenital is there from birth, can be removed

and the ear doesn't necessarily have the " right " conditions to support a

recurrence the ctoma....if that makes sense.

I would say that since you and your doctor are now aware of the

cholesteatoma possibilty, monitoring your sons right ear is probably the

only way to prevent as much hearing loss in that ear IF a ctoma occurred.

The sooner they find them and get them out, the less damage it does to those

bones. My son had all the bones removed from his ear because the ctoma had

grown around them and up into his mastiod. The doc said that if it had been

caught sooner when it was smaller, there MAY have been a chance to save

those bones. Our doc has talked about protestic bones and/or hearing aids

later on. We don't know how much of his hearing would be restored with

either or both of these. My son has lost about 60% of his hearing, I wish I

knew a way to prevent a ctoma, we are concerned about having one come back.

Barbara

>From: " conradcrampton " <conrad.crampton@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Prevention of cholesteatoma & reconstructive

>surgery

>Date: Sun, 06 Feb 2005 11:12:53 -0000

>

>

>

>Hi,

>My son is 6 years old and has recently had a CWD in his left ear. He

>has half of one of the three inner ear bones left and only has about

>30% hearing in that ear. All appears to be healing OK with that

>following op (Dec 2004). Biopsy results are still not back so

>unknown cause of cholesteatoma - congenital or from burst eardrum

>which he had about 18 months ago.

>

>He now has had another burst eardrum in his right ear and we are

>worried about the formation of cholesteatoma in his right ear. Does

>anyone know of anything that can be done to help prevent the

>formation of cholesteatoma? (e.g. cranial osteopathy? drugs?

>homeopathy?)

>

>Also, in the worst case scenario, what options are there for

>enhancing his hearing if his right ear goes down to the same level

>(or worse) as his left ear?? reconstruction/ cochlial implant /

>hearing aid etc.

>

>Thanks

>Conrad

>

>

>

>

>

>

[Guest guest]

Follow your Doc's guide lines if you have seen him

about the new problem. If you have not seen your Doc

get your son into to see him or here asap. Non

medical theropys such as homopathy will do not good in

in warding off c-toma, be very carful about listening

to those who say other. The only cure for c-toma ia

surgery. Reconstruction in most cases is always a

option...

tom hansen

--- conradcrampton <conrad.crampton@...> wrote:

>

>

> Hi,

> My son is 6 years old and has recently had a CWD in

> his left ear. He

> has half of one of the three inner ear bones left

> and only has about

> 30% hearing in that ear. All appears to be healing

> OK with that

> following op (Dec 2004). Biopsy results are still

> not back so

> unknown cause of cholesteatoma - congenital or from

> burst eardrum

> which he had about 18 months ago.

>

> He now has had another burst eardrum in his right

> ear and we are

> worried about the formation of cholesteatoma in his

> right ear. Does

> anyone know of anything that can be done to help

> prevent the

> formation of cholesteatoma? (e.g. cranial

> osteopathy? drugs?

> homeopathy?)

>

> Also, in the worst case scenario, what options are

> there for

> enhancing his hearing if his right ear goes down to

> the same level

> (or worse) as his left ear?? reconstruction/

> cochlial implant /

> hearing aid etc.

>

> Thanks

> Conrad

>

>

>

>

>

>

>

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