Cholesteatoma in both ears

[lyndix 10]

That sounds really scary as a mum lyndix I know that it's a necessary thing but that doesn't make it easy.

 

I hope that it's over and his hearing returns fully to his ear soon.

 

Thanks medusa.

Its an awful disease and a long, risky operation( last time was almost 6 hours in theatre)

I wish as his mum I could take it away and have it for him!

He's a strong lad though, has been through a lot aleady and tends to take it in his stride(handles it much better than me)

The sad thing is that in many cases it returns and he will spend the rest of his life being monitored just incase.

Edited February 25, 2013 by lyndix

[lyndix 10]

Quick update on my boys progress.

He has now healed well since the last op to remove the cholesteatoma although has had a constant infection in his left ear which won't clear even when its been cleaned under the microscope. Obviously they have to keep an eye on this as its constantly wet and no amount of hairdrying is going to dry it out!

His hearing loss is so severe in both ears he has been told he needs a BAHA(bone anchored hearing aid). They don't know how he has managed for so long with such low readings from his hearing tests.

He was given one to try for a couple of weeks and was amazed at how everything sounded. Because his hearing has always been bad he has nothing to compare it to so its obviously a huge difference to him.

We go back next week then the wheels will be put in motion (they have to apply for funding for the baha) for the op to fit it, which will probsbly be early next year.

Xx

[jodileah 10]

I am a 33 yr old mother of 3 & after a childhood of ear infection and sensitivity to pressure and water i thought i outgrew them but about 8 years ago i had an ear infection with a dark drainage that was actually draining onto my pillow at night and a foul odor so my dr prescribed me antibiotics which did nothing, so after a second round we tried anotger antibiotic then another stronger one and after 6 months of antibiotics and 2 hospital trips due to allergic reactions to 2 of the stronger ones, my dr finally referred me to an ENT dr who immediately ordered an ultrasound and diagnosed me with a cholesteotoma. I didnt realize how serious it was until my next visit when we scheduled my surgery and i found out my very long hair would be shaved and my ear partially cut off and the risks during surgery...i was telling my dr to cancel surgery and ill deal with the drainage until he explained the risks and fact of this being a progressive cyst that could eventually cause tremendous damage and death...i then realized my hair wasnt my biggest concern and went forward with my surgery. I had a total of 4 surgeries on my left ear in a pretty short period where all 3 bones ended up removed as well as my nerve to my tastebuds and almost the muscle to my face but my dr chose to attempt to only scrape it knowing how worried i was for my face to be paralized then my final surgery was to recobstruct with prosthetic bones and thankfully my facial muscles werent afftected. I did get about 40% hearing back in my left ear but after about a year of being totally deaf in that ear i am thankful of the little hearing i got back. Although its still tough daily living with this disability of not knowing where noises are coming from or understanding words being spoken if any background noise or constantly saying "huh?" My kids use to hide my phone and laugh at me when it rang trying to find it but would be scary when driving and kids had to tell me an ambulance was coming or which direction coming from. I have horrible sinuses and always get infections during allergy season and usually always ends with bronchitis which im fighting now...my otger ear has started screechi.g when i blow my nose every time and i know thats not a good sign for my only good ear but not sure if i should rush to ENT and uncertain of chances of a cholesteotoma in right ear too? Also asking for advise on hearing devices or aides suggested that are unnoticeable but affective. Any info or advice is appreciated. Thanks

[SILLY 10]

Jodileah you should be having yearly check ups at your ENT clinic. It was at my check up that they discovered my right eat was infected a few years after my first operation on left one. Get you GP to refer you to ENT and they will check both ears and advise on hearing aids. It is very important that you have the check ups as they can become re infected .

[jodileah 10]

Silly...i guess i wasnt aware of the yearly check ups, or if i was then "life" got the best of me and i spaced it lol. I have had only a couple check ups since my surgey so i will definitely get one scheduled and pray for good news with my right ear. Thanks alot for your advice and concern.

[SILLY 10]

jodileah I don't know where you had your operation but mine was at the Hallamshire. After your first few regular check ups they say see you in a year. They then send a letter in a year for you to make an appointment. I suppose It's easy to put it to the back of your mind but if you don't reply in 2 weeks you get struck off the register. Maybe that's what happened. Hope that you get on okay and that you don't have to wait long ( you shouldn't do ). Let us know how you get on. I would like to add that after my op in my right ear my hearing was not much at all but is slowly improving so I am very happy.

[lyndix 10]

Hi jodileah, as silly says you should be having yearly checks with ENT as the risks of the cholesteatoma returning is high once you've had it. You should also be offered yearly cleaning of the ears to get rid of any debris(this can lead to another cholesteatoma forming if the ear is wet)

As you know the risks that come with the disease are huge and its important that if another growth is forming that its caught early before it causes any more damage.

Theres lots of excellent hearing aids around that are very discreeet. I believe Boots and Specsavers have hearing centres as do some costco stores and would be happy to give advice and show you some of the options available.

A normal hearing aid isn't suitable for my son as his hearing loss is severe so he needs a bone anchored hearing aid as these attach to the skull and work on vibration rather than sound. We have an appointment at the hospital tomorrow to arrange the op to have it fitted, hopefully we won't be waiting too long as I'm sure its going to improve his life so much.

Good luck x

Good to hear you are keeping well too Silly xx

[SILLY 10]

So pleased to hear that your son has an appointment to arrange his op lyndix I bet it's not going to be long now before he will have no excuse for ignoring your motherly advice I was told that ordinary hearing aids would not be any good for me either but mainly because of infection so perhaps the ones available privately would not be any good for jodileah.

[lyndix 10]

So pleased to hear that your son has an appointment to arrange his op lyndix I bet it's not going to be long now before he will have no excuse for ignoring your motherly advice I was told that ordinary hearing aids would not be any good for me either but mainly because of infection so perhaps the ones available privately would not be any good for jodileah.

 

I think you could be right silly, but they would be able to advise which ones would be suitable. I'm quite surprised that her consultant never discussed it with her, my sons consultant (mr Ray) gave us lots of great advice about them.

His appointment went well today, was his first appointment at an adult hodpital! Had another hearing test, still no improvement so wheels are in motion for the BAHA, as soon as funding is agreed they will find us a slot to fit it. They are hoping it will be before christmas but realistically looking at January, will all depend on the surgeons schedule but its only a small procedure to attach the abutement to his skull.

Take care silly, hope you are well xx

[lyndix 10]

Quick update..... After constant infections this year we went to see the consultant on Friday and they're fairly sure the cholesteatoma is back in my sons left side!

He's going back on Tuesday for a CTscan to confirm, it's only 2 years since his op on on that ear !

Fingers crossed they're wrong xx

[SILLY 10]

Sorry to hear this lyndix and I truly hope they are wrong. When I saw you had posted I felt sure that it would be to say he was having his hearing aid in time for Christmas. Fingers crossed for you both but it does show how important these checks are as we both said to jodileah.

[jonny121 10]

Hope his ct scan is all clear Lynne xx