Re: Re: Does anyone have this since Cholesteatoma removal?

[Guest guest]

Hi Wenche,Not sure that you all get this after surgery to remove cholesteatoma but reading up about it seems that it could be.Today as been a better day for her although the sound of the Hoover this morning started the tears then a day out by the beach, lots if noisey motor bikes. We have started carrying a couple of sets of mouldable ear plugs wherever we go now so that we can try make every day noises more comfortable for her.Please do report back with your findings from your doctor/surgeon and I'll do once we have seen him on the 4th.Many thanks,Sent from my iPhoneOn 25 Apr 2011, at 15:45, "Wenche" <wenche.rolandsen@...> wrote:

hi,

I am sorry to hear about your daughters problems. This is the first time I have heard about this condition. But when I read about her symptoms, I feel like I am reading about myself. My mother have told me I had this issue with sounds when I was a kid, too. My problems with my ear started already at the age of 6 months. After I had my kids this problem felt worse than ever. No wonder! I will ask my surgion about this condition when I go back in two days.

Please, let us know what the doctors are telling you.

The best of luck,

Wenche

>

> Hi guys,

>

> It's been some time since I had any questions or news to report but now need some input?

>

> My daughter Hollie is the little lady that has suffered/ still suffering. Her story so far -

>

> December 2009 started with ear ache and chronic discharge

> February 2010 operated to insert Grommets for supposed glue ear, Tonsil and Adenoids removed. Under surgery Ctoma discovered in her left ear. Not refereed to specialist for this till May 2010.

> 19th May 2010 Ctoma removed under 3 and half hour op. Oscillies totally destroyed, ear drum destroyed but rebuilt.

> June 2010 - March 2011 a number of infections in both ears, responded well to ear drops.

>

> Now we get to April 2011 and a new problem starts....she has become intolerant to everyday sounds, every little noise hurts her ears, running water, television, people talking, etc...it goes on. She always seems irritated by her ears, pain, feeling of popping in her ears, fullness, pain running down her neck (left side only for pain). I had a look to see if this was a side affect from surgery but couldn't fine anything so went to see my mums neighbour who is a Paediatrician....he asked Hollie to describe what she is experiencing and came back with a diagnosis....Hyperacusis http://www.entnet.org/HealthInformation/hyperacusis-increasedsensitivity.cfm.

>

> I just wanted to know if anyone else out there has this, suffered with it or being treated for it?

>

> I have friends and family who tell me to stop worrying and that all is OK....erm no! I know my child and knew there was something wrong. Its been hard watching her getting so upset, especially when she is invited to friends parties but the noise is to much and she sits out with her ears covered.

>

> We are back to her consultant on the 4th May which can't come soon enough. I'll report back with his findings. In the meantime if anyone out there is/ has suffered with Hyperacusis it would be good to hear from you.

>

> Thanks,

>

> - Hollies worried mummy ;(

>