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Dealing With Cholesteatoma (My Story)

Posted , 16 users are following.

Ryan2895
Ryan2895

I thought I would do this to try and help people deal with Cholesteatoma. I'm 18 years old and been diagnosed with this problem half my life so I kinda know a little about dealing with it. I've had half a dozen major surgeries and I still go to hospital every 2 weeks for regular treatment and have been told this might be a lifelong problem. I wake up most morning dizzy and in a considerable amount of pain. Being completely death in the infected ear I think the thing that bothers me most though isn't the hearing loss or the pain it's the tinnitus. With another operation coming up I thought I should try and help someone else if I can. If anyone has any pain, regular bleeding from the ear or even something like ringing in the ear I advise you to go and get it checked straight away, it might not be anything major but It's better to be safe than sorry. Go see a doctor or even speak to one of your parents about it just don't ignore it. If the worse case scenario is Cholesteatoma just know that you never have to deal with it alone, If you ever feel down talk to someone about it. I hope this can help someone.

7 likes, 27 replies

27 Replies

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  • Court_Jester
    Court_Jester Ryan2895

    Posted

    Hi Ryan,

    I've just joined this group and am on a very steep learning curve.

    I like your positive attitude and admire you for your willingness to help others.

    Please keep us posted on your own progress, 

    Meanwhile, I discovered that it is possible to get a little gadget that helps with tinnitus.  When I have more information about it, I'll pass it on.  I'm in Australia, and in Summertime the cicadas are very noisy in the trees.  My Tinnitus gives me the experience of cicadas all year round, and when it first struck, I found that pretending it was 'only the cicadas' helped me to deal with it.

    I have an appointment with the Audiologist next week [for fitting of new hearing aids], and I'll make enquiries about the gadget I saw and pass on the information.

    Meanwhile:

    Did you hear the joke about the ENT Surgeon and the Dental Nurse?

    Neither did I ... I'm deaf.

    [laugh or groan at your leisure]

    Cheers!

    Court Jester

     

    • Court_Jester
      Court_Jester

      Posted

      I forgot to mention, I've just been diagnosed with Cholesteatoma, and have joined the Group in search of information whilst I await an appointment with an ENT.

      I've been told it could take 12 months just to get in to see him.

      So ... meanwhile I'm on a learning curve to discover how to deal with this misleadingly named difficult-to-spell disease.

       

    • erumsham
      erumsham Court_Jester

      Posted

      hi,

      i was just found c toma for my 12 year son and now started hoeopathic treatment for it want to know if anyone in this forum have tried out homeppathich treatment and it could get better

    • sunnysunshine
      sunnysunshine erumsham

      Posted

      Hi there, I saw your comment and decided to sign up just to reply to your comment. I have been operated 4 times for cholesteatoma and have been battling with this problem for a big portion of my life since the age of 7, including regular check ups and cleaning of the ear. I could practically write a book about it. When I was 7 I had my biggest operation which took several hours. Before the operation I had been battling with cholesteatoma for several months and no antibiotics could get rid of the infection due to the build up of skin in my middle ear, which eventually spread to my inner ear and destroyed 30 percent of my hearing. When the surgeon started the operation he thought it was only in the middle ear, which is why they had to extend the operation. The cholesteatoma was so severe that had I waited longer, it could have damaged my brain or other fatal complications! The point I am trying to make is, please be responsible and take your child to a doctor and let the professionals deal with it. The longer you wait, the worse it gets and can be very damaging as cholesteatoma erodes bones in the middle ear and eventually the inner ear. To this day I have a titanium implant in my middle ear due to the damage the cholesteama has caused. I had to get another operation because the implant had fallen loose. So please, for the sake of your child, go to a doctor!
    • erumsham
      erumsham sunnysunshine

      Posted

      Hi ,

      thanks a lot for ur concern i m visiting the best doc in town but unfortuantely he did not give a hope for haering for 12 year old boy thats was the main issue thats why now i m booked for second opinion for my son plus he also suggested a re construction surgury after an year yes my son too had anti biotics for abt 4 months finally nothing worked and now i m looking for best option for my son a neuro otologist which i hope i could find anyways thx

    • sunnysunshine
      sunnysunshine erumsham

      Posted

      I dont understand, you said that you just found out that your son has cholesteatoma? Is it still infected? Are you trying to treat the infection with homeopathic treatment? If so, I would leave it up to the ear specialist to treat. You can't treat a cholesteatoma with homepathic treatment, it's dangerous. When I was 7 the ear doctor kept giving antibiotics which didnt work. He thought it was just a normal ear infection that many children get. Finally we got the diagnosis and I was rushed for an operation. Good that you are getting a second opinion, because that is what we did and I was finally treated. It just sounds strange to me that they would diagnose your son with cholesteatoma and not do anything about it.
    • erumsham
      erumsham sunnysunshine

      Posted

      initialy for atleast 3 months he was misunderstood for ear infection n had undergone 3 to 4 courses for anti biotic nothing worked until it was diagonized for cholestoma my first doc was not hoping to save his hearing due to which i i have to look for second opinion which is due next week now i m focussed for neuro otologist if i could find soon the surgury date
    • sunnysunshine
      sunnysunshine erumsham

      Posted

      Ah ok I understand. Unfortunately this does happen that they misunderstand for a normal ear infection. The exact same thing happened to me in 1989. I went for months and months with antibiotic treatment and it did not work ofcourse since it was cholesteatoma and it just got worse and worse the longer we waited. Good that you are persistant. I'm so sorry to hear that you are going through all this :-( 
    • 4theloveofhorse
      4theloveofhorse erumsham

      Posted

      Hi,

       can you tell me what the homeopathic treatment for the Cholesteatoma was, I would like to try before having surgery.

      thank you,

      kelly

  • ian67108
    ian67108 Ryan2895

    Posted

    Hi all

    First time for me on any forum site but this site realy helps.

    My story.

    I had my c-toma removed from my left ear in December 2012 I lost my hearing and balance.

    I then had an infection in my inner ear and had to have a radical mastoidectomy in Aug 2013, then had to go to ent every 2 weeks for microsuction.

    The infection came back again.

    In December 2013 I had a petrosectomy with a dermal fat graft and a blind sac closure, this cleared the lot out filled the inner ear with fat from my stomach and closed the ear off permanently.

    in June 2014 I had a BAHA fitted, but it's not that good as I have no cochlea and all the sounds go through my scull to the cochlea in the right ear, hence no sense of sound direction.

    The bottom line is.

    I have no hearing in my left ear

    I dont get any pain and never have

    I do keep getting headaches.

    I don't suffer with wet ear

    I can put my head under water now.

    I don't have to go for microsuction any more.

    Whilst the operations were unpleasant they have had a positive effect on my health, but I still have very bad balance problems and don't know how to resolve it.

    I turned 60 the other day and feel and walk like I'm 80

    I hope this is of any use to anyone especially the last operation I had, it made a big difference

    Regards to all

  • diz123
    diz123 Ryan2895

    Posted

    Hi Ryan am new to this forum/group have just had Cholesteatoma surgery 3 weeks ago, 4 hours in surgery had a skin graft on ear drum as skin was growing upwards on ear drum and had gone most of the way round the drum. Ear drum was diseased also which Doc scrapped away and removed excess skin from behind eardrum also.

    Had packing removed from inside ear Friday just gone and a hearing test which showed hearing loss of 20% but was told this is to be expected as only just had surgery. Had to ask lots of questions to get answers but hopefully hearing will return to near normal but maybe up to 3 months before this happens. Not alowed to get wet for 3 months no flying and keep cotton wool in ear to infection. Reading other people's stories concerns me a little but hopefully will turn out fine. Have another doctors appointment 4-6 weeks hopefully by then the muffling will have stopped slight ringing in ear but not to bad.

  • tracy25770
    tracy25770 Ryan2895

    Posted

    Hello!

    Like you I have lived with cholesteatoma for most of my life. I was diagnosed when I was ten years old, alot of damage had already been done. I missed quite a bit of schooling due to persistent ear infections then when a new G.P checked my records and pointed out I had only ever visited his surgery regarding ear infections. I was referred to an ENT specialist.

    That was thirty seven years ago.

    Now after three mastoid operations including a reconstruction. I go for check ups every six months. I have had ups and downs mostly due to a lack of understanding of the disease. As long as its kept clean and dry, I don't really have many problems. I became accustomed many years ago to my loss of earring. The last operation was in1995. This is the longest I have gone without an operation.

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