Cholesteotoma - Children

Hi, my 6 yr old has had this surgery a couple of times - first one when he was 4. Recovery was quite quick and it didn't seem to hurt as much as I had thought - Calpol for a few days was enough pain relief. The first time his balance was a bit off & he was nauseous for the first week post-op - kids travel sickness pills (taken after discussion with surgeon & GP) helped. I did keep him off school for 3 wks not the recommended 2. Also we used a Buff headband to keep the bandage on & then to keep his ears protected for that time. Finally, be ready for it to take a lot longer than you might think - we were told about 3 to 4 hours approx as an estimate but actually every op has been 5-6.5 hours long and it can feel a quite worrying when it overruns your expectation. Very best wishes for a successful op & speedy recovery for your little one...

Hi my daughter was in 3rd grade on her first surgery. After care was not as bad as I thought it was going to be. The doctor made an incision right behind the ear. She got nausea because of the anesthesia and the doctor messing with middle ear,but wore off after a day and half. They gave her pain medicine,steroids, and antibiotic to go home with us. He is probably not hearing well and hopefully the surgery will help (give it a few weeks). The dizzy spells are normal with cholesteatoma and hopefully it will clear up too. I believe my daughter was born with to, but it took a long time to diagnose her. The surgery took about 4 hours (on average, she has had 9 cholesteatoma surgeries). She is a very rare case and it not normal to have that many surgeries. Doctors at Vanderbilt are writing papers on her. Most of the time 1 surgery is all you need. She usually bounces back from surgery in couple days and eats me out of house and home(steroids). I hope everything goes well. Anything you want to ask just post.

Oh and also if he is not hearing well, audiology may loan him a BAHA device on a soft headband until post op. Ask your ent if they think is necessary.

She is almost completely deaf because of this. She is completely deaf in left ear ( it destroyed her 3 hearing bones and hit the facial nerve) she looks like she had a stroke on that side. The doctor did a wall canal down during her last surgery on the left side so he can get into the middle ear easier in office to avoid surgery. The right ear is almost deaf ( maybe 40% hearing left). Since she has only hearing in that ear the doctors have to very careful doing surgery or risk what left of her hearing. But unfortunately the cholesteatoma got so bad they had to go in. The cholesteatoma had started destroying her ear canal and skull bones. Her brain lining was exposed and risk of infection to brain was a concern. Most doctors won't do the surgery unless the risks outweigh the benefits. The doctor who has been doing this for his whole life said he has only done a handful of these surgeries. This a specialist doctor at Vanderbilt.

Thx for all the support! I am just glad my daughter and i are not alone. There is no one locally to talk even in the hard of hearing/deaf community.

Hi. When I was 5 had a cholesteatoma and massive mastoidectomy. This was 30 years ago. Today I had an appointment with an ENT who explained all of this to me, as I had been given a very simplistic explanation of what happened when I was 5. I was a bit disappointed when she told me that there wasn't anything she could do about improving my hearing (I have a complete conductive loss in my right ear due to eroded middle ear structures).

But I am happy to say that I did well in school and I am now a successful Speech-language pathologist. While my hearing loss is frustrating at times, I have been functioning well without the hearing. Plus, from what in been reading tonight, I understand that my case was more unusual so hopefully your son won't have the same problems with hearing.

I hope you can be somewhat reassured by my experience.

Take care.