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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

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  • deborah1969
    deborah1969

    Posted

    Hey there Ryan, I was 16 when I had my first surgery due to the same problem, it has started destroying the skull now I have a very thin layer of skull . I am now 44 and understand your pain it has been a lifelong battle .i just seen my specialist Friday as to where now another surgery in now set for Dec. 12.This will make my fifth surgery for this.i like you urge everyone to not to ignore the little signs . Doc says he will be using a bio active glass material to fill in the mastoid cavity, as it is horrible for me to have the regular cleanings I am supposed to have.i too am deaf in the effected ear. I haven't heard of many people having this problem until I really get to checking on it. Good luck in the future
    • gabygaby
      gabygaby deborah1969

      Posted

      Hi Debrorah

      i have just come across this thread and have recently had a radical mastoidectomy after suffering for many years with ear infections and never correctly diagnosed..Just over a year ago it was found i had a brain abcess above my bad ear but they still don't know for sure if it was caused by the ear infection.I am having to go regular for cleaning of my ear as well.I was told that my cholesteatoma was big and it wasn't known how big till they started to operate.Did you find you was still getting sharp pains behind your ear a few months after the op which come on and off with numbness round the corner at times the dr's seem so casual and say its to be expected.I have done a bit of research and it seems alot who have this op and removal of the cholesteatoma end up having another op which i really don't need to think i have to do it again.How has yours started to destroy your skull?i actually had a crainotomy last year when they discovered  the brain abcess and i get some weird sensations from both ops

  • trelissa
    trelissa

    Posted

    Can I say thank you. My daughter is twenty with cholesteatoma, because she has learning difficutlies, austism and now hearing loss she finds it difficult to explain what she experiences - so thank you for helping me to understand this from a point of view of the patient.
  • gabygaby
    gabygaby Ryan2895

    Posted

    Hi Ryan i have actually sent a reply back to Deborah instead of you but you will see it anyway.Its by chance i found this site.....
    • trelissa
      trelissa gabygaby

      Posted

      My daughter has just had her fourth op.  She has been lucky so far, she now has tuille phenomonon which is a huge issue, and now wears ear defenders, but finds the dizziness and sickness really difficult to manage.  She has tiny ear canals and tiny eustachian tubes, and we have been told that  this will be ongoing.  I really stress about this.  Her last op has left her without the ability to taste food.  -
  • debbie34565
    debbie34565 Ryan2895

    Posted

    Hi ryan i too have choleseatoma after having it over 20 + years now, ive just be diagnosed with polps in the same ear, i hate having this, its such an unpleasant smell, i can taste it (sometimes aswell as smell it) I never give people a hug on my left side (as i worry they too can smell it) I feel dizzy, and feel as though my face is going numb on the one side. you are right that people should be aware about any kind of disturbance in there ears and should get them checked out. When i was first diagnosed with cholesteatoma i'd never heard of it before, let alone spell it, but over the years i've got used to it, and should be having another op soon and bioposy on the polps, hopefully i get less discomfort and pain in my ear. Sometimes i feel as though i've been punched in the left side of my face from the pain.
  • ripstone
    ripstone Ryan2895

    Posted

    I live in the USA.  Had cholesteatoma surgery Nov. 2012 at Johns Hopkins Hospital in Baltimore, Md. by Dr. John Carey supposed to be one of the best in the country..  I was deaf in the left ear from c-toma before surgery.  Though the surgery was necessary I wish I never had to have it.  Here it is 5 months shy of two years and I still have to endure monthly cleanings and my balance has never returned fully.  I hate the disease as it has literally ruined my life.  I will see the Dr. June 4, 2014 for yet another cleaning.  I can tell my tinnitus though very low and sometimes non existent and my fluid balance disorder is coming from a nerve.  I am also left with no sense of taste or smell.  I will ask my Dr. this week if he can cut whatever nerve is ruining my life.  I can't drive and when walking I must be very careful as my balance sucks.  I know the surgery is necessary as without it too much damage and death can occur but if I had it to do over again I am not sure I would go through with it.  I don't mean to frighten anyone but be prepared to have some altercations to your lifestyle.

     

  • trelissa
    trelissa Ryan2895

    Posted

    I completley agree.  My daughter has had four operations.  She has learning difficulties also, so helping her to understand is so difficult.  She complains of tinitus, dizziness, echoing etc so often it makes me feel quite helpless.  She lost her sense of taste after the last operation.  She hates having them, and hates me for making her have them.  Obviously she has to. I took sodium valproate for my epilepty and it affected her, in such a way that it has added further complications to cholesteatoma.  I find it really useful to read posts such as this, as I need to understand her experience, due to her learning difficulties she finds it difficult to explain to me what she experiences, and I so want to help her.
    • ripstone
      ripstone trelissa

      Posted

      I fully understand.  I am getting better very very slowly but almost two years is a bit much.  I will be more than willing to keep you informed.  Johns Hopkins is supposed to be the best hospital in the world but I guess there is only so much they can do for this.  They keep telling me I am improving.  Ya could of fooled me.  L:OL.

       

    • trelissa
      trelissa ripstone

      Posted

      I have come to believe if by the end of the second operation, a third is looming, then you are in for the long haul.  I find it frightening, especially as so little research goes into this area.
  • ripstone
    ripstone Ryan2895

    Posted

    I have had 3 and a forth is looming. The forth is because my eardrum keeps blowing. If my ear settles down they will then close the eardrum again.   By the way my problem started after a bad cold that turned into glue ear. Unfortunately, ear weakness runs in the family.  Both my mother and great grandmother had otosclerosis.  My poor great grandma never got past a hearing aid. My mother has prosthetics placed in her ears in the 1970's and her hearing was restored. I am fortunate to live in the state of Maryland. Both the University of Maryland Hospital and Johns Hopkins Hospital do extensive ear medicine/surgery. Baltimore Maryland has a lot of hospitals. Sort of the hospital capital of the USA.  The old saying here is, if yor're gonna be sick, do it in Maryland.  I have been patient but my patience is running thin as I am sick of being sick. 
  • ripstone
    ripstone Ryan2895

    Posted

    I know you have government medical plans there. We are fighting against it here but if you can check and ask if any of the ear doctors there trained at Johns Hopkins. Johns Hopkins purposely educates doctors from all countries. They totally want their trained doctors in all countries. Someone over there likely trained at Hopkins.  Over here most ear nose and throat doctors are called Otolaryngologists. When you get into serious ear diseases you then go to a neurotologist.  That is where I go now.  You might google Johns Hopkins Hospital and read up on their advancements. You can also email them and ask if they can refer you to someone over there that they may have trained in neurotology.  There is also a Dr. In Switzerland who has made great strides in this field. I will post his name tomorrow.  It's on my other computer and I have spoken to him via email. I believe he is in Geneva. 
    • jay43019
      jay43019 ripstone

      Posted

      My son had his operation done by Mr. John Hamiltion at the  Glouscerter Hospital in the  uk.  Mr Hamilton is highly specialised in treating cholesteatomas. He also works privately and has a website with more information
  • ripstone
    ripstone Ryan2895

    Posted

    I just remembered his name.  He is ENT Institute, dr. Oskar Kujawski, Geneva, Switzerland.  One of the big causes of cot a is Eustachian tube dysfunction.  Dr. Kujawski has developed a surgery that clears the tube by entering the tube endoscopically through nose. If I don't get better soon I am considering visiting his institute. He did tell me he is training two American doctors to do this surgery. Yesterday would be soon enough for me. 
  • esclaved
    esclaved Ryan2895

    Posted

    Hey Ryan and all the folks who've responded below. Thanks so much for starting this post and your inputs, replies and most important of all, your experiences. My niece has been diagnosed with C-toma and we're hoping to try Homeopathic treatment before we opt for the surgery. Your postings have given us very important perspectives. I'll keep you posted.

    Ripstone, your input on the swiss doc is much appreciated as well. We'll see if is a feasible option for us.

    For those of you who are dealing with this and feeling down, all I can say is keep your morales high and have faith in yourself. You'll be just fine......have faith.....and hang in there!

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