Cholesteatoma- 7 year old

Our son was diagnosed with congenital cholesteatoma aged 4.He is now 5 and had canal wall up surgery last June. According to consultant canal wall up is better for young patients as there is less chance of infections and doesnt affect lifestyle as much as canal wall down(swimming,diving etc). The only thing with canal wall up is they need to do a second operation 9 to 12 months later to check if cholestearoma has started growing back.

The surgery was 5 hours long . The cholesteatoma had eaten away most of his rear ear bones.He recovered really well. His hearing has reduced significantly and also has lost some of his taste, but no infections or problems.

We are now waiting for a second operation around April to May. This operation is to check if the cholesteatoma has grown back. Hoping all goes well. Hoping it hasnt then we can look at rebuilding the ear and maybe hearing aid.

The consultant said it can grow back at any time so he will always have follow up appointments and monitoring.

Hope this information be of some help. I spent hours and hours online looking for answers when my son was diagnosed so I have some idea on how you must be feeling.If you have any questions will be more than hapy to help

Just thought I'd post an update for all of you going through this now. My son was diagnosed with congenital cholesteatoma when he was about 8 (took a while for them to discover that's what it was), he had the operation age 9 and is now 13.

His op was at Birmingham Childrens Hospital performed by Mr Panamaguwa who is very experienced at this op. My feeling was that the NHS surgeons do this type of operation a lot more than private ones and that for this the NHS was where the expertise was.

He had to cut behind the ear and pull it forward and found that most the the little hearing bones (ossicles?) were damaged so he completely removed them replaced them with a titanium bridge the size of a hair.

It was successful in that the cholesteatoma has not grown back (I had heard many horror stories of repeated operations), his hearing in that ear is now regarded as normal but his hearing in the other ear is so good that he feels like he is still a bit deaf in 1 ear, but that is because of the imbalance so the brain tends to pay more attention to the signals from the best ear.

On my son's last check up the surgeon told my husband that they now do this operation without cutting the ear open using something like athroscopy, so anyone about to go through this do ask about that.

N.B. One very important point to bear in mind post-operation, that your surgeon will not know about: For many weeks after the op my son had constant severe headaches that kept him off school and actvities, the surgeon said there was nothing wrong with the ear, so I took him to a cranio-sacral osteopath that I have been to before. The osteopath said the neck was out of place porabbly caused by having his head turned to one side for hours during the operation. After some gentle treatment and a little acupuncture my son leaped off the bed and said he felt normal again - he was literally cured on the spot and had no more headaches!

Hi 

My son's operateion was successfully  undertaken by  Mr. J Hamilton in Gloucester, who is a  cholesteatoma specialist. 

Hope that might help.