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Help and advice please.

Posted , 2 users are following.

Christ2fear
Christ2fear

Hi everyone!

I am new here. I have been looking for answers for years now. I already had two mastoidectomy operations to remove the cholestatoma in my right ear. I already lost my hearing. The only concern I have is that it still smells bad. I have been to a number of EENT's already and it is frustrating to hear that nothing is wrong but I know for a fact that there is wrong, my ear has a smell. I can smell it and I can also hear comments from people beside me or near me that there is something going odorous. I can no longer go to public places and social gathering and I can't go or join a crowd and that is is very disturbing for me coz I need to work for myself and my family. Hope anyone can give me advice and solutions for this problem of mine. Thanks in advance for your support and help. 

0 likes, 7 replies

7 Replies

  • Hope6767
    Hope6767 Christ2fear

    Posted

    Have the doctors perform a mri or cat scan? The pictures will tell them. If they havent demand one. This disease usually is in middle ear with the pockets of air. If the pockets are not present on scan,that means something is filling the space( either the disease or scar tissue). Also the medince ciprodex(drops for ears). If the medince works the smelly ear( s) will not smell anymore. Depending on the severity of disease surgury may be required. Get a scan and have your ent look at it, hopefully they can get you into a specialist for this disease.
    • Christ2fear
      Christ2fear Hope6767

      Posted

      Hi Hope,

      Thank you for your advice. I am really down at the moment. I have lost my girlfriend and work because of this disease. My only problem is that it still smells specially when im in a cold place. I can no longer sit in the middle of a crowd of in between people. I usually sit or stay at the rear seat or at the back where I am not in the middle of people because i am down when they make fun at me. They usually just speak eye to eye to talk about my ear. I had bren doing research on what medicine could help remive yhe smelly ear. It is dry, no dischsrge and had seen doctors in Singapore and was told that the operation was good and it is dry and they dnt see anything that can cause the smelly ear. I often tell them it smells when it is directly hit by air or when Im in a cool place and you sit besude me then you will smell it and it makes me sad coz i am disturbing their lives and makes them uncomfortable. People will always close their nose with their hands or cough or sneeze because of my disease. Hopefully i can find a medicine or eardrops which will make the smell ho away coz that is the inly dilemna i have right now. I always wanted to be normal and act normal whrn im in a group or crowd where i dnt have to jst stay at the back or rear.

    • Hope6767
      Hope6767 Christ2fear

      Posted

      My daughter had the same problem with the smell. The other kids wont stand near her and teachers would call me complaining she smell. Go to your ent get your ear(s) clean out, and ask for a medicne called ciprodex. You put in your ears. If it works the smell will disappear. Give about 3 weeks. If it doesnt clear up ask for the cat scan/mri. We have dealing with this for several years and we are lucky because we live near Vandybilt hospital with alot of ents that specialize in this diseases. This disease is dangerous if left untreated. Alot of her problems are because of moisture(swimming shower),season changings ,and weather pressure(when it about to rain). She doesnt swim and wears custom earplugs in shower. Earplugs you can get at ent or audiologist. I paided $10 us.
    • Christ2fear
      Christ2fear Hope6767

      Posted

      I hope it will work with mine.. not sure if what is yhe cause even doctors tell there is nothing wrong where in fact there is.. i jst can t understand it because yes it is dry and not discharging but it smells stills when hit by durect air or in cool places. Ny doctors are already tired dealing with me because almost every month i get to see them and complain about my dilemna.

      Doctors say it is because my ear is no longer the normal one and it does not produce normal eatwax already that is why it smells.

      I will look for ciprodex and will try it. I have earwax remover drops now but it does not help. I have been for months looking for any drops to help remove the smell.

  • Hope6767
    Hope6767 Christ2fear

    Posted

    The medicine is prescribed by your doctor. You can't buy it over the counter. Go to you ear doctor and ask for it. Give 3 weeks to see if it will clear up. If it doesn't clear up or it returns after a few weeks ask for the cat scan or mri. A smelly ear is not normal.
  • Hope6767
    Hope6767 Christ2fear

    Posted

    Also not all ear doctors can see a problem with cholesteatoma and it takes a specialist. My daughter has to go above a normal ent doctor to get evaluated. I sent you in private message info on the medicine.
    • Christ2fear
      Christ2fear Hope6767

      Posted

      Thanks a lot .

      Already had two surgeries and last one made my ear dry and good no morr discharge but it still smells though especially in cool places..

      I will try to look for neurotologist and will update you..

      Really appreciate your help and lifts my spirit. Thanks so much!

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