Cholesteatoma - Numbness

Posted , 8 users are following.

Hi there, 

I am 24 years old and have recently been diagnosed with "the monster". I have suffered with ear problems for as long as i can remember, I've had endless amounts of grommets inserted as a child and as an adult i have had 2 myringoplasty/tympanoplasty operations. 

I was hoping for some insight about what to expect for the future from people who have experienced this beast first hand! I have damaged hearing in the affected ear, but i am terrified at the prospect of losing it entirely. How have you all been affected after surgery?

I have had a substantial amount of bleeding from the affected ear for several weeks, to the point where it has become "normal". I went to see my GP yesterday, and he had never heard of the condition and googled it!!! He didn't know what to do, so sent me on my way. I am not due to see my consultant until the 17th of December, and within the last 24 hours, the affected ear and surrounding area has gone totally numb. Is the numbness something others have experienced? Its not pleasant!

Please share any advice you have - it would be greatly appreciated. 

Thanks, 

Stace

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15 Replies

  • Posted

    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

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    • Posted

      Hi, 

      Thanks for your reply. 

      Oh wow, that was quick! 2 weeks! I'll be lucky if my hospital sorts it in 2 years haha! Where abouts did you have the op? I hope that you are feeling a bit better and you heal quickly! I feel for you with the tinnitus! It is something that i suffer with now and again already, so i totally understand how frustrating it can be! 

      I havent heard of the losing taste thing before, it never even crossed my mind! How awful! I'm not sure if/and when i get the op, if my surgeon will be able to go in at the front, as i have previously had 2 ops done that way. I am also seeing my specialist on the 17th! So please let me know how you get on there! 

      My best wishes to you. Feel better soon and take care x

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    • Posted

      QMC queens medical centre in Nottingham!

      Well they thought I had a polyp so I went in to have that removed and the surgeon said "oh there isn't one there so good news you can go home" I said well no it isn't because now I have no answers so to bad ear for 4 years and I get passed pillar to post and told to use olive oil and I'm not one to kick up a fuss but I did and he sorted it all for me and got me in ASAP. I thought they was going to tell me February or something as the waiting lists are 4-6 months!

      I'm getting used to the tinnitus but when I notice it that's when I get frustrated Haha!

      You taste nerve and facial nerve run right through the middle so they have to be really careful but I had to loose my taste nerve 👍🏼 I love food too and nothing is the same now lol!

      I'm recovering really well though thank you it's just sooooo itchy! And I'm dying to wash my hair but can't find a way around not catching my ear lol!!!

      Hopefully they get you a date quickly! But preferably after Christmas lol!

      Xx

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    • Posted

      Oh really!!! When I put it I thought imagine if its that same Place haha!

      They are great well the surgeons are! Ahh well fingers crossed they get you in quickly! Like I say mine was 2 weeks!

      Are you going to the QMC on the 17th or your hospital to push for there! X

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  • Posted

    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

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    • Posted

      Hello smile

      Thanks for your reply. 

      Wow, your husband has really been through a lot! Was he aware of the disease on the brain or was there no symptoms? 

      It sounds like he had a skilled surgeon to have had no nasty side effects ..ie the tinnitus and loss of taste etc..however, saying that, those things are very minor compared to the infection. 

      I hope the healing process speeds up for him as i bet it is frustrating for the both of you! 

      Best wishes to you and your husband 

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  • Posted

    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.

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  • Posted

    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 
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  • Posted

    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

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  • Posted

    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
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