Cholesteatoma in 8 yo with moderate hearing loss - can hearing recover after surgery

[PacificDogwod]

DS3(8) was diagnosed today - I did not see this coming.

So, now we are waiting for a CT scan and then surgery.

Any knowledgable people about? Professionals or parents/patients with experience?

He's a wee star

Recovering well and is entirely well in himself which is a relief.
He is still getting regular pain relief (including dihydrocodein ) and gets up @ 3am asking for it as he is sore.
His ear is weeping a lot less and I think by the time next week is over he will be well bored and ready to go back to school!

I hope he's still getting chocolate for breakfast? Hope all continues to go well.

He is back to his normal cheeky self
Pretty much off painkillers (although had some tonight before bed), the dissolvable sutures are beginning to come off and he is well and truly ready for school again next week - phew!
Not more ruddy chocolate after breakfast either...

His classmates have been really lovely with Facetiming him, sending cards and Jelly babies - godda love a bunch of 8 year olds and their mums who no doubt organised things

Review appointment has come through for in 3 weeks too.
Onwards and upwards.

Oh I'm so pleased it went well and he's recovered well. Amazing how much quicker children bounce back than adults.
Hope he settles back into school well

Glad to hear the surgery is over and he's recovering well. My son, 15 now, had cholesteatoma, and we were also told there was extensive disease ("massive growth, major surgery" were the consultants comforting words). He had surgery at 9 monthly intervals from the ages of 4 to 9, and lost the bones of the middle ear. He was offered reconstruction but it would have ruled out contact sport so he chose not to go for it. His hearing in that ear is low, but he manages brilliantly. The only time we notice is when he has a cold which lowers the hearing in his stronger ear. Good luck with recovery and future treatment.

So pleased to hear it went well and he has recovered so quickly. Hope the review appointment is positive.

I am reviving this thread because DS's 'Second Look' operation is coming up on Monday

He has been fine and his ear has remained dry since last year. His ear drum has closed over again and he has been swimming (although not diving/swimming under water/jumping in).

Hearing of course remains crap - well, that was never going to improve without an attempt at reconstruction of the 2 ossicles his lost.

So, Monday we are going in again.
He is more scared and worried this time because he knows what's coming.
It's the anaesthetic, or rather the iv access in the back of his hands, that he is frightened of. We will ask whether he could be put off to sleep via gas and a make or whether the venflon could be sited higher up in his arm and not at the back of his hand.

I'm just posting really as a kind of diary, but any comments/experiences/advice very, very welcome

Ds was much more scared (grommet ops) as he got older.

What I did for him the last time he needed it:

1. We planned a midnight feast for him. He chose what he wanted to eat (egg sandwiches) and he wanted to scoot round the estate at midnight.
2. When we arrived I had a quiet word with the nurses and said he was scared. They arranged for some play therapy.
3. Ds hates the IV in his hand too. I explained why he had to have it, and sympathised. I don't know if they'd do it in the elbow-or whether that might be worse. He was less bothered by that, whether it was because he knew why it was there or something else I don't know. I also promised to ask that it would come out asap.

When it came to it, he was more excited by the midnight feast and scoot than worried about the op.

He's always been put out with the gas. The way they did it last time was challenged him to blow up a balloon through a pipe. After a few puffs they change it to gas and he was straight out.

Ds takes ages to properly come round after GA. So I brought a couple of presents to open and they let him watch a DVD.

I forgot to add: Good luck.

Thank you for sharing your story, Witchend

I've had lots (and lots and lots...) of IVs, think one new one per day for 10 weeks or so, during a hospital admission some years ago. I had them in the back of my hands, elbows crease and was once advised to have one in my foot (I politely declined and they found another place for it), so I too have every sympathy with how nasty they are. I always found the elbow crease ones less uncomfortable, I think just because the arm is more fleshy there?
Anyway, we'll have that conversation that he is scared with the nurses and the anaesthetist and see what our options are.
And he is a wee trooper, he'll get through it alright, I know he is made of quite stern stuff.

He has announced that daddy is to go to the anaesthetic room with him this time (I went last year) as 'a treat for him'

Your ds sounds like such a lovely strong character. But it is scary when your child has to undergo something like this. Hugs and love for all three of you for Monday .

Posted earlier on your thread. My daughter has had between 15-20 GAs (lost count) and when she was younger, always had the gas induction. We gave up on the 'magic cream' as she didn't like the bandages they put on. She also has a Midazolam pre med which makes her more compliant and also helps with an amnesia type effect so she doesn't dread the next time quite so much. My husband always does the theatre escort, thank goodness!

Hope it goes well and it's good news.

Well, he's now asleep.

Thank you for your thoughts and good wishes

Yes, he is a trouper and he is being v brave - more so this year IMO as he actually knows what's going to happen and is therefore more scared.

At bedtime he said he wanted to tell me something "but it is going to make him cry" - took a while to get it out and, yes, he welled up, but it was about how much he appreciated that his older brothers were concerned for him when he came home last year. It was v sweet
And he does not wish his favourite soft toy to have a bandage this year - the theatre nurse did this last year and while I thought it was a really nice touch, it freaked him out a bit. So I assured him I would make sure that Minky will not get a bandage.

7am start tomorrow.

It's done, he's home.
He was really brave, clearly scared but holding it together.
Massive bandage around his head and really needing all his pain relief but went to bed ok.

The middle ear was clear of disease, the mastoid cavity full of it. Again .
So, MRI in a year with the anticipation of further surgery at some point in the future. Boo-hiss!!
He did get a tympanoplasty done and some kind of clever cartilage reconstruction for the ossicles he lost last year, so 70% chance of an improvement of his hearing once the packing is out and everything is healed properly.

Glad to hear he did well and hope he is recovering well. Hope you see the hearing improvement.

Glad it's over. Hope he's feeling much better by now.