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

May 19, 2011

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

Recommended Posts