Cholesteatoma Op - aftermath

Hi,

My daughter was 5 when diagnosed and 6 for her first operation (wall up) . I was very concerned about how she would cope with the pain and how I could help her and make her comfortable and to be truthfull shecoped with it all very very well. She never complained not even about the pain straight after the op,the most she said was my mouth feels funny. Her taste was funny for a while.The nurses kept askin her if she needed calpol and she kept replying No!! The only time I insisted on her having some was taking the bandages off and checking the wound. In the following days she coped really well . I kept telling her to calm down and stop running around but that doesn't work for a 6y old . As you can Imagine. In the days to follow I kept calpol and nurofen with me "just incase"only needed it a few times but I always made her wear a hat to keep the chill off. She was amazing and was again for her second operationA little longer to heal this time around but still was brave and coped brilliantly . She is now awaiting a third op due February/march time . Hopefully she will cope the same .

Any thing else you would like to know or I can help you with please let me know. It's scary but I look at it like it could be alot worse. X

Hi, my son had his first op (wall up) last January and really didn't experience much pain after. He was 11, so quite a bit old than your son, and never really complained about pain. I did however keep him dosed up with the hospitals supply of calpol and neurofen. My friend, who is a nurse, took the dressings off after about 4 days and cleaned all around the ear. The packing was a little bit of a problem as one day he returned home from school with it in his pocket!! He had fiddled with it and it came out. I called GOSH (where he had the op) and they said it really wasn't a problem and he had his routine examination (back under general/a) a few weeks later. The hardest thing was washing his hair! You will probably be OK if your son is only 4 as he won't be too worried about keeping it so clean but our son wanted it washed. It was a massive worry for us when we went through this for the whole of last year but it all went so well and I wish you and your son good wishes and will say a little prayer that everying will go well for him too.

If you need any other tips, please ask xx

my daughter is just about to have her fourth cholesteatoma op. She has Fetal anti convulsant syndrome, this has given her a malformed middle ear and her eustachian tube does not work. Preventative care is a big issue because of this. I am shocked by how many times people talk about ear syringing - please don't it enhances the problem, so if this has happened to your son - microsuction only. The other thing was that my daughter had an australian audiologist - she did custom made swim moulds (for showering) they were so much better than cotton wool and vaseline. She has had her ossicles removed, mastoid surgery, bone removed etc. So there are issues of pain relating to noise, dizzyness and nausea etc etc. I found ear protectors really useful - although not perfect. hope this helps someone - take care

well this was 11 months ago, but I hope can informyou  or anybody else as to what he might experience in the next few years. I suffered with Cholesteatoma when i was a child a bit older than your son,at age 10. I am 18 years old now and i am completley deaf on my left ear. All cases are different but as a kid, I wasn't able to do physical activities at school (still can't), because most patients suffer with dizziness and balance issues, this may or may not be a set back dependeing on how active he is, also, swimming was the worst part for me, my mom bought me silicone plugs, they arent regular ear plugs, but little slicone blobs that look like play dough , you mold them to fit his ear, and the set has a harnes that looks like a headband. i HATED it! but look in to purchasing the headband ,not only for water but to keep him from picking at the scars or inner ear you just want to be extra carefull in baths, any body of water it is an open invitation for an infection. -i wasn't able to feel the left part of my face either. The walking and coordination skills are the worst part for patients, I look like I walk drunk, and my feet go everywhere. An I have fallen and passed out a few times too because of the dizzy feeling. And last but not least..THE COTTON FEELING! this will be around a few weeks post- op it feels as if your inner ear was digesting cotton, it is a gross feeling that made me more squeemish than the pus or blood. Also the ear cleanings, they had to hold me down while they would introduce the metal thing in my ear. Needless to say, i hope he has a great recovery, just confort him any way you can not only now but well into his teens. It's a scary thing and has long term damage.I wish you the best of luck !!