Re: Unwanted trip on this journey with my 12 year old son...stapes removed yesterday

[Guest guest]

Hi Christi,

It sounds like your son had an acquired cholesteatoma, since it didn't show up in the early scan. The real reason for Chloe's soon to be 14th surgery is that hers was congenital so it was throughout her middle ear and mastoid making it easier to leave some behind, even a small amount will regrow. She also had a tendency for rapid and unpredictable growth. Some surgeries were also due to complications, such as infection. I will say that early on I would have been overwhelmed to know there were 14 surgeries ahead, but we have just done them one at a time.

 

He was probably hearing through the cholesteatoma as Chloe was before the first removal. Since there is an interruption in the ossicular chain now, I would expect that he will have no conductive hearing for now. That doesn't mean no hearing, though. Chloe uses a hearing aid as we are currently between rebuilds. She had a great working prosthesis in there at one point, but it had to be removed due to regrowth. That is one of the goals for June 10. She had near normal results when the prosthesis was in good position.

 

On the upside, her story is downright bizarre, and most people have much more straightforward cases. I always say this group is full of people with crazy stories because the people who are doing great are off doing great and don't have time to post! Maybe we should have a post of people who had only one or two surgeries!

On Thu, May 19, 2011 at 1:16 PM, christicopes <christicopes@...> wrote:

I am new to this group. My son was diagnosed with a retracted left ear drum at age 7.  This was after 4 sets of tubes for chronic ear infections.  We are a military family, and we had to move shortly after the diagnosis.  A CT scan was done, but no cholesteatoma was found.  The doctor who began treatment after our move did not want to embark on reconstruction, but rather opted to put another tube in my son's left ear to help reverse the retraction, which it did.  The tube fell out after a year, and we proceeded to have 2 more put in over the next 3 years.  After that we moved again (to Ft. Bragg) and started over with a new doctor who is absolutely wonderful. My son's tube had once again fallen out, and our new doctor immediately recommended reconstruction of the ear drum and inspection of middle ear for cholesteatoma.  Of course that is exactly what he found.  He removed the cholesteatoma and reconstructed my son's ear drum in Oct. 2010.  My son had his second look surgery yesterday, and the results were not what we had hoped for.  The cholesteatoma had grown back and eroded his stapes.  The stapes was removed, and the cholesteatoma was also removed once again. He is doing ok today and not in much pain.  He will have surgery again in 6 months to either clean out another cholesteatoma or give him an artificial stapes if the cholesteatoma has not returned.

The bad part is that we are losing our doctor because he's leaving the Army to start a private practice. My son's surgery yesterday was the last in his Army career.  We will be following up with an associate of his on post, but I don't know how I feel about that.  I have never met him, and our doctor said that his associate had done this type of surgery before, but he didn't know if he would want to take my son's case or not.  If not, then we will obviously get a referral, most likely to UNC Chapel Hill.  My gut instinct is telling me that is what needs to happen.

By the grace of God, my son's hearing has miraculously been much better than expected since this all began. All the doctors he has seen have said his hearing should not have been as good as it was, considering the condition of his ear. Now that he has lost his stapes, it will probably be much worse. Has anyone lost just that bone, and if so, how did it affect you?

I am honestly terrified after reading through many of these posts and seeing stories of people going through this 8,9,...14 times.  I had no idea what we were in for!Christi------------------------------------

[Guest guest]

Thanks . After reading your response, I feel more encouraged. Austin's

cholesteatoma was definitely acquired, not congenital. Our doctor also said he

had been hearing through the cholesteatoma.

I hope things go well for your daughter on June 10th. I can't imagine doing this

over & over & over. She sounds like one very strong little girl!

>

> > I am new to this group. My son was diagnosed with a retracted left ear drum

> > at age 7. This was after 4 sets of tubes for chronic ear infections. We

> > are a military family, and we had to move shortly after the diagnosis. A CT

> > scan was done, but no cholesteatoma was found. The doctor who began

> > treatment after our move did not want to embark on reconstruction, but

> > rather opted to put another tube in my son's left ear to help reverse the

> > retraction, which it did. The tube fell out after a year, and we proceeded

> > to have 2 more put in over the next 3 years. After that we moved again (to

> > Ft. Bragg) and started over with a new doctor who is absolutely wonderful.

> > My son's tube had once again fallen out, and our new doctor immediately

> > recommended reconstruction of the ear drum and inspection of middle ear for

> > cholesteatoma. Of course that is exactly what he found. He removed the

> > cholesteatoma and reconstructed my son's ear drum in Oct. 2010. My son had

> > his second look surgery yesterday, and the results were not what we had

> > hoped for. The cholesteatoma had grown back and eroded his stapes. The

> > stapes was removed, and the cholesteatoma was also removed once again. He is

> > doing ok today and not in much pain. He will have surgery again in 6 months

> > to either clean out another cholesteatoma or give him an artificial stapes

> > if the cholesteatoma has not returned.

> >

> > The bad part is that we are losing our doctor because he's leaving the Army

> > to start a private practice. My son's surgery yesterday was the last in his

> > Army career. We will be following up with an associate of his on post, but

> > I don't know how I feel about that. I have never met him, and our doctor

> > said that his associate had done this type of surgery before, but he didn't

> > know if he would want to take my son's case or not. If not, then we will

> > obviously get a referral, most likely to UNC Chapel Hill. My gut instinct

> > is telling me that is what needs to happen.

> >

> > By the grace of God, my son's hearing has miraculously been much better

> > than expected since this all began. All the doctors he has seen have said

> > his hearing should not have been as good as it was, considering the

> > condition of his ear. Now that he has lost his stapes, it will probably be

> > much worse. Has anyone lost just that bone, and if so, how did it affect

> > you?

> >

> > I am honestly terrified after reading through many of these posts and

> > seeing stories of people going through this 8,9,...14 times. I had no idea

> > what we were in for!

> >

> > Christi

> >

> >

> >

> > ------------------------------------

> >

> >