Cholesteatoma in both ears

[medusa 16]

Crossed fingers that this marks the end for the disease and he can get on with living his life afterwards. His last few years must have been miserable with the level of pain he must have been in.

[SILLY 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

 

 

This doesn't sound right at all where did your husband have the op? I had mine at the Hallamshire. I have had both ears done and my left one was the first and no trouble at all. I was completely deaf and I now have some hearing in that one. The right ear has not been quite as successful but still not bad. I had pain for 2-3 weeks with both but the right was worse and my tongue was numb on the right side. I also lost my taste buds but they have returned also the numbness is not that bad either. I also had blood and puss from my right one for over 2 weeks. I am now fine though after having a tiny cyst removed which was found in one of my follow up visits but this was in the outer ear. Hope that your husband soon recovers and hope that they have given him plenty of pain killers.

[joheffey 10]

Thanks Silly. We are logging everything and today I am going to start putting together a letter and list of questions to his ENT. I think it has been made worse by the fact that he has seen various ENT consultants whilst he was in hospital and they have all said different things. I really hope his tinnitus does not become permanent. The pain and deafness he can cope with as he has had that since a child but the constant buzzing and popping and frozen face are depressing him and he is exhausted. Thanks so much for your reply and hope your own recovery goes well. I will post updates on here xxxx

[lyndix 10]

Thanks Silly. We are logging everything and today I am going to start putting together a letter and list of questions to his ENT. I think it has been made worse by the fact that he has seen various ENT consultants whilst he was in hospital and they have all said different things. I really hope his tinnitus does not become permanent. The pain and deafness he can cope with as he has had that since a child but the constant buzzing and popping and frozen face are depressing him and he is exhausted. Thanks so much for your reply and hope your own recovery goes well. I will post updates on here xxxx

 

Hi mate, unfortunately these are normal after this type of surgery, and sometimes dosn't go at all. My lad has suffered with this for years and they say theres nothing can be done. Ask to see a different ent consultant if you are not happy with what they are telling you. Sometimes you just need to get the right one to spot something.

Write a list of all the questions you want answers to and don't leave until they are answered.

Sometimes the facial nerve can get knocked or bruised during surgery so that should be temporary(if they had damaged it they would have told you).

Really hope your hubby makes a good recovery.

Please keep us posted on how you get on

Lynne x

 

---------- Post added 10-05-2017 at 07:25 ----------

 

Crossed fingers that this marks the end for the disease and he can get on with living his life afterwards. His last few years must have been miserable with the level of pain he must have been in.

 

I hope you're right medusa cos I really don't think he can do it again

And thankyou for your kind words xx

 

---------- Post added 11-05-2017 at 09:55 ----------

 

Was very ill yesterday, got rushed to hallamshire.

Being violently sick, high temperature, grey coloured, pain. Was not in good shape.

Home at minute but got to keep a close eye on him in case signs of infection or csl leak show x

[TheBTA 10]

Thanks Silly. We are logging everything and today I am going to start putting together a letter and list of questions to his ENT. I think it has been made worse by the fact that he has seen various ENT consultants whilst he was in hospital and they have all said different things. I really hope his tinnitus does not become permanent. The pain and deafness he can cope with as he has had that since a child but the constant buzzing and popping and frozen face are depressing him and he is exhausted. Thanks so much for your reply and hope your own recovery goes well. I will post updates on here xxxx

 

If you have any questions about the tinnitus aspect of it then please contact us at the British Tinnitus Association.

[medusa 16]

I don't even like talking about tinnitus because it makes mine 100 times worse. Thinking about it makes is worse, sitting in silence so I cannot avoid it makes it worse, high pitched noises make it worse.

 

What makes it better is a very carefully crafted studious policy of truly ignoring it, ignoring the concept of it and ignoring the very fact that it exists (but not thinking about ignoring it because that is still paying attention to it). Then music on in the background when otherwise there would be silence, and I'm good.

 

I've tried white noise, I've tried a selection of other things, but generally, they all involve listening to see whether it's better and that makes it much worse just because I'm paying attention to it.