Cholesteatoma in both ears

[lyndix 10]

Unfortunately back in hospital due to infection.

Had ct scan yesterday, MRI today x

[medusa 16]

How dreadful for him to have to be so tough. I had very extensive operations and hospital stays and I wouldn't wish them on my worst enemy. And as his mum it must be heartbreaking to not be able to prevent him from going through it all. How are you doing with it all?

[SILLY 10]

So very sorry to hear this lyndix hope the scans can get to the route of it. It's bad enough going through major surgery but to get infection so soon is awful. Hope the scans show where the trouble lies. Thinking of you all xx

[lyndix 10]

It's pretty tough watching him have to go through all this but you just get on with it don't you?I'll probably end up collapsing in a heap when it's all over!

Been a very long day. Couldn't do MRI today looks like being Monday.

Thanks for the kind words, I will keep you up to date on his progress but for now I'm off to bed xx

[lyndix 10]

So here we go again!!

My lads ear has been leaking and infected ever since the mastoid obliteration and lateral temporal bone resection he had last March. There is a hole in the graft and fat that was grafted into the cavity is leaking out. He is in constant pain.

Numerous antibiotics and procedures to try and seal the graft and bring the infection under control have failed.

He is now on the list for more major surgery. His Mastoid obliteration with blind sac closure using rotation temporoparietal fascia flap will take Place around March. A much bigger operation than the last one as they will be going over the top of his head and taking living tissue from the other side of his skull to fill the cavity (instead of fat), as it will have its own blood supply, they hope this will be enough to fight off any infection and give the area time to heal.

We have all got our fingers crossed that this is successful and the final one for him! Xx

[SILLY 10]

That sounds very major lyndix and my thoughts are with you both. Your son has had so much to put up with at an age when he should be out living it up with his mates. Fingers crossed for you that the operation is successful and that he can start living his life as he should.

[lyndix 10]

Hi SILLY, thank you for your kind words. He is not handling things too well at the minute, but we are all rallying around him, trying to take his mind off it while we wait and hoping this op will be the last one x

How are you doing?

Have you had a nice Christmas and new year? Xx

[Dannykb123 10]

Hi this goes out too all

I have cholesteatoma in both ears I've had this now for near on 30 years (I'm 43 now) had loads of operations on my ears had full on mastoid ops and still got it I keep going back for my check ops and having micro suction but still coming back I wear bi lateral hearing aids and only have very small amount of hearing in both ears but still working still in able to claim disability allowance

My message to all out there is don't let it rule you , you rule it don't let it change your life yes it's serious and yes in a lot of cases it can be life threatening but we are in charge not a disease we rule our lives.

To be deaf is not a problem to have a disease is not a problem it's just another task on our road to enlightenment

[lyndix 10]

Lads operation at Birmingham on Thursday....not looking forward to this one x

[SILLY 10]

Hope all goes well lyndix will be thinking of you all.xx

[lyndix 10]

Hope all goes well lyndix will be thinking of you all.xx

 

Thanks silly, I will let you know how it goes.

Hope you are keeping well xx

 

---------- Post added 05-05-2017 at 06:24 ----------

 

Quick update.

The op went really well, 7 hours of surgery and the lad looks like he's been in a wrestling match with a crocodile but all very neat.he has drains in his head to stop a build up of blood and any infection behind the graft.

He has been an absolute star, much braver than I ever could be, i am so proud of him.

Lets hope this stops the bloody disease!!

X

[joheffey 10]

Hi Lyndix, glad to hear your sons op went well. Sounds like he has really been through it. I am struggling to cope with my poor husbands ordeal right now. He had surgery on his left ear 3 weeks ago. 3 days later his head was swollen and taken into hospital with an infection. A blood clot and infection had formed and 4 days later returned to surgery to have it all drained. The following day his face was frozen on the left side and his taste buds destroyed on that side. He looked like he had suffered from a stroke. He was allowed home 8 days later on steroids and antibiotics and ear drops. Now a further week has passed and he still has the paralysis, throbbing pain in his ear (mainly at night), a constant buzzing and crackling sound in his ear which is driving him insane, a crunching / grinding sound from his ear which is really loud when he chews or swallows, and also every morning he removes cotton wool to find blood and some type of puss. We saw his consultant on Wednesday with all these problems and he has shrugged them off saying they are all normal. We are not convinced at all and my husband is seeing his normal GP on Wednesday. He is not sleeping and is extremely depressed as he sees no end to the pain, noise and paralysis. I am at my wits end with worry and trying to keep him positive. I hate seeing him suffer. If anyone has been through anything similar or has any advise I would be so grateful. Jo xx