Cholesteatoma in both ears

[lyndix 10]

Thinking of you and hoping that this time they manage to clear it completely. It must be playing havoc with his life as well as being a very worrying time for you. xx

 

Thank you silly, he is putting on a brave face but he is struggling xx

[lyndix 10]

Well my son's op a month ago went well.he had the packing removed yesterday. His hearing is very bad at the minute, hopefully this will improve.he still has a lot of bleeding and leaking as they did a meatoplasty at the same time (very neat but really sore)to try and stop the c-toma returning. He's also on antibiotics for another month and microsuction every 2 weeks for the next couple of months. Fingers crossed that it doesn't return as the next step is quite drastic (the mastoid would be removed and the cavity filled with belly fat and sealed off completely)it's not something they like to do on a patient so young. We are hopeful that the meatoplasty helps tho.

[lyndix 10]

Things have not improved for my lad. The ear has been leaking and infected since the op and he is completely deaf in that ear. Today at his appointment it was found a polyp had already grown and skin was filling the canal so any infection can't get out and the antibiotics can't get in. They do not know why this is happening and have referred him to Birmingham for a mastoid obliteration. A drastic operation for someone his age but it will leave him with only a 20% chance of the cholesteatoma returning. It's rare for the ear to behave like this (he is only the 3rd patient to have been referred for this by his consultant in 10 years)

Hopefully we won't be waiting too long xx

Edited July 15, 2015 by lyndix

[SILLY 10]

So sorry to hear this lindix he is having such a rough time of it. On the plus side they are keeping on top of things and it has been discovered pretty quick. I'm sure that given the seriousness of things he will not be waiting to long for the op. I hope that it is a complete success and that the cholesteatoma is finally eradicated. Please keep us informed x

[lyndix 10]

Thanks for your kind words SILLY. The bad news just doesn't stop coming for the poor lad, I feel so sorry for him.

They don't know why it's behaving this way. Out of the 1000's of people they see, he says there's probably only 3 or 4 that behave this way(not usually this quick). During the last op he took away as much bone as he dare which is why he wants to go for the complete removal and seal it up. The consultant he's been referred to has done a few of these ops and they have been successful, so fingers crossed! X

How are you doing SILLY? Xx

[SILLY 10]

I'm fine thanks kind lindix and fingers crossed I keep that way. It's good that your son is seeing a top specialist in this field and the fact that he has had success is very reassuring. It does seem a very drastic measure but when everything else has failed it's the only thing left. On the plus side allthough it is awful that he has suffered so much he is young enough to mend quickly and hopefully have the infection free life that he deserves.

[lyndix 10]

Off to Birmingham tomorrow for my lads op. Nothing seems to be stopping this disease so he will be having a mastoid obliteration and a lateral temporal bone resection as well as having the magnet removed from his skull so he can have MRI scans to be sure nothing else is causing it to behave this way.

Fingers crossed for me laddo xxx

[SILLY 10]

Thinking of you and your lad lindix and hoping that all goes well tomorrow. Sorry that he has had such an awful time of it and hope that this opp is a total success and that he can get his life back on track.xxx

[lyndix 10]

The op went well. All the diseased area has been cleared out,mastoid removed n temporal bone shaved down etc and sealed up with belly fat (fairly large graft site on his tum because he's so slim) . The wound on his head is quite extensive as they've gone around the ear then across to the magnet site.he is in a lot of pain (much more than the last operations he's had) but he's doing really well.

Will keep you updated on his progress x

[SILLY 10]

Glad that everything went well and that this time he is totally clear of infection. I can imagine he will have a lot of pain it's a very extensive operation that he's had but hopefully it won't last too long. Wishing him a speedy successful recovery and a return to normal teenage life.

Thinking of you and the rest of the family as well .

[lyndix 10]

Thanks SILLY, I think it was a bit of a shock to him how tough this one was going to be.he thought it would be like the others but is finding the pain difficult to manage. Will get him through it though,he's a tough cookie.

Then we'll be able to have an MRI n hopefully the all clear xx

[petemcewan 27]

Johnny,

 

Hope everything has gone well for you.