Cholesteatoma - Numbness

Hi I'm 22 and 2 weeks ago been diagnosed with this also! I have been going back and fourth to the ear nose and throat for 4 years with ear bleeding,constant infections, constant perforations and hearing loss. Around 35%..

When they finally found it the hospital wasted no time and booked me in for surgery on the 1st of December so I am Newley pre op! The thought it would only be small to be at there shock it was massive! Stuck on all my mastoid bones so had to have it all drilled out, my ear drum has retracted so that has been put back, I've lost all 3 hearing bones and now have tinnitus, it's driving me insane' constant ringing since my op but that I'm afraid is the side effect! I also had to sacrifice my taste never so my tongue and cheek feels slightly numb and I have no taste whatsoever on that side! I've heard it gets better but doesn't come back 😢 it's really annoying as I literally cannot taste anything so it's putting me off food! Probably a good thing lol! Surgery was ok and pain wise the bones are sore surrounding but my ear doesn't hurt at all, more bruised feeling but today I've got no pain so I'm glad really,

I'm lucky they went in just from the front as he new how much I wanted to save my hair lol!!!

But I'm also back with my specialist on the 17th of December so I can tell you more then as i can't remember much of what they told me due to them telling me seconds after coming round and been giving morphine!

But I would definitely have the op i just hope mine doesn't come back!

X

Hi. My husband is 57 and was diagnosed with this in April when he was admitted to hospital with intense ear problems.It was found when they did a mastoidectomy operation. I won't

write all the details as everyone's cholesteatoma is different. My husband was operated on 6 months later in October. He had a

constant infection during this time with constant blood etc

coming out of his ear and from his wound behind the ear. He

had a huge complex disease running along the dura of his brain. The surgery was 6hours. But it has been completely removed

as far as they know. Healing is slow&he's still off work. But NO

LOSS of hearing, taste or tinnitus(which he had dreadfully until

the op).Disease never went into inner ear but through middle ear canal destroying it. Surgeon reconstructed this.

There are a lot of horror stories the Internet but it doesn't mean

you will experience the same. The disease grows slowly. Any questions...feel free to ask.

Good luck

Hey there!

I'm 22 now and I was diagnosed with it when I was about 8 or 9 years old. I had it in both ears, and it took 3 surgeries to completely get rid of it since it reappeared after the first one in my left ear. The last one was when I was 11 or 12. While I had it I remember having ear discharges all the time as well as bursts of pain or tinnitus for no apparent reason. I don't think I had numbness while I had it, however there was numbness and unaccessible itching inside my ear post-op that drove me nuts.

Regarding long term consequences - I have a very noticeable hearing loss in my right ear, however that's not that much of a problem and I got used to it quite quickly. Occasional tinnitus and vertigo is still a thing, but it used to be much more frequent and there are no more bursts of intense pain. Sometimes I regain hearing with my right ear for a few seconds, however that comes together with pain and disorientation. I'm still not allowed to swim and I have to be careful in shower. I'm good with flying and elevators now, pressure change isn't as painful as it used to be anymore.

The sooner you will have surgery the less tissue will be removed and the higher chance that you won't suffer long term hearing loss.

I've also had a Cholesteatoma removed 1 1/2 years ago and still have no taste buds on the left side of my tongue, I was told it would be a short time and it would return but it hasn't. I also have pain and drainage down my throat on the left side along with tingling on my tongue when I touch or itch my ear. Has anyone had any of these symptoms? If you ever put your tongue on a weak 9 volt battery to test it...thats what my tongue feels like ...lol. My Dr. says he sees nothing wrong looking into my ear canal...I don't think he is going to see anything because it's in and beyong the ear drum. I recently met with the Cheif of surgery at the Hospital to explain my frustration with my Dr and his lack of care it seems to look futher and investigate my issues, I am so frutrated so just wondering if anyone else has had any issues. Thanks 

I've just had cholesteatoma surgery yesterday in the queens medical centre as a day case.

Igoogled this morning why do I have a numb tongue with no taste on the infected side, no one mentioned this to me yesterday before surgery so was hoping it was just a side effect. My tinnitus is as loud as ever, and now I've also a loud pulsating in my head. Hoping this is just a side effect also.

I was in theatre for and a half hours, I had already been told back in March by my consultant that it was a very large mass and was sitting on my facial nurse which is why I had lost the feeling in the right side of my face.

6 and a half years I'd been misdiagnosed and falsely medicated for migrain.. so glad I eventually got a second opinion as my symptoms were becomeing much worse.

Hope you girls are sorted. Any advice from post op people greatly welcomed

Sam

Katie good morning jyst wanted to ask you if your ear back to its normal place and if you still fill numbness.or if your face still swollen.how long did it last .i just got surgery in may 2017 and i have that now