Hearing after cholesteatoma surgery

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I am 22 and was told I have cholesteatoma yesterday. Even after getting recurrent infections in my right ear once every year for the last 6 years I did not think a condition of this nature would exist. So it came as a major shock to me! I know it is rare but if not treated can cause many complications. I am really worried how my hearing would be after the tympanomastoidectomy with removal of ossicles/hearing bones as at the moment I have only slight loss at high frequency. Is it a definite hearing aid will be needed after? is the hearing loss mild/severe? Is there anyone who has not needed a hearing aid?

Anything will be much appreciated! Thank you

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  • Posted

    Hi sorry to hear, it was a shock for us when we found out our 10 year old had a cholesteatoma, try not to worry. our son has his 1st surgery at Great Ormond Street and has combined approach tympanoplasty where the canal wall was left up. The cholesteatoma had eroded 2 of his 3 bones. During second op 6 months later the surgeon reconstructed the one bone he had saved and our son's hearing is good now - just mild to moderate loss in one ear but you would never know. I also met a man in his 40's on holiday who had had both ears affected and didnt wear hearing aids. Hope all goes well for you, take care.
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  • Posted

    Hi there,

    I am now 16 years old with this condition and going for my next operation soon, This will be my fifth operation and my first was when I was in year 5 at school. I am now in year 11. As far as I am aware my whole ear was cleared by the doctor who is reluctant to re construct my hearing until I am 5-10 years clear of the disease. The scans I had for the last two years should it had not re occurred until the latest one. It is very small and the size of 2mm. As my ear is very cleared the doctor could not see the skin the scan indicated with a microscope. He said he will get a better look in operation as I will be asleep. If there is anything he can remove it through the ear hole straight without cutting me open. Furthermore, I have never once used a hearing aid despite my affected right ear suffering hearing loss. I can hear at the back of the class, but I guess i have got used to it. My condition is now much under control. my first operation and second took around 7 hours and the third and fourth around 3 hours. This one should take approx 40 mins. I hope I helped. A reply would be appreciatedsmile

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    • Posted

      We sound like we have had the exact same experiences...do yoyou know why the doctor wanted you to wait 5-10 years though? I'm in my 10th year without it and was wondering why my doctor has never mentioned this surgery.
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  • Posted

    I don't think enough parents think of that properly. the abilty to communicate is a big part of what defines us as a person. Hearing aids can be problematic. Use it only whilst your ear is healthy. My daughter was seven when she first had it so I managed to get her into BSL classes that were provided at her school. Lip reading is also useful. Most people seem to focus upon the operation, but when the figures are so high for recurrence a stratagy has to be considered. At the worst a parent needs to do a deaf awareness course, not just the 1/2 a day thing that is often done, but the course. If you can get a custom made swim mould from your audiologist than that will reduce the issues involved, as will mcrosuction. I would imagine you have had these done. How do you cope with the long term prognosis?

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  • Posted

    I don't think enough parents think of that properly. the abilty to communicate is a big part of what defines us as a person. Hearing aids can be problematic. Use it only whilst your ear is healthy. My daughter was seven when she first had it so I managed to get her into BSL classes that were provided at her school. Lip reading is also useful. Most people seem to focus upon the operation, but when the figures are so high for recurrence a stratagy has to be considered. At the worst a parent needs to do a deaf awareness course, not just the 1/2 a day thing that is often done, but the course. If you can get a custom made swim mould from your audiologist than that will reduce the issues involved, as will mcrosuction. I would imagine you have had these done. How do you cope with the long term prognosis?

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  • Posted

    Hi!  Just wanted to encourage you.. I am 59 years old and just had surgery to remove a cholesteatoma.  Yes there is fear of hearing loss but the consequenses of not doing it are worse.  I made it through the 5 1/2 hour surgery great! .  they removed all of my hearing bones and my eardrum.  They rebuilt an eardrum at the same time.  I will go have check ups but hopefully in 6 months , they will rebuild the  bones  and i will hear.  It's amazing what can be done.  In the meantime,   i stay positive.. i am not wearing a hearing aid and hopefully won't have to in the future. I am thankful it was caught when it was.  It had started to eat through my facial nerve..  the sheath is gone but my nerve is still intact.  i have to be very careful not to get an infection.  I swear i can hear out of that ear but my doctor says i cannot.   I have high hopes that i will not need a hearing aid after the operation to rebuild the ear.      Make sure you have surgery as quickly as possible to keep damage to a minimum.  I hope your surgery is a success and  I will pray for you!     feel free to stay in touch and ask me any questions as i go through this  a step ahead of you.    I am glad to help. 
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    • Posted

      I completey agree, speed is the essence of it.  If it is left it will still continue to eat away at the bone, creating a bigger area in which to catch the skin debris, and more likely to have a repeat of the experience.  You do have to act fast. 
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    • Posted

      I have just been diagnosed with cholesteastoma and will be having surgery next week.  The cholesteastoma has eaten all of the bones and also has eroddd a section of the temporal bone. The sheath is also gone from my facial nerve. My doctor is planning on 1 long surgery - clearing the cholesteastoma, rebuilding the bones and ear drum as well as repairing the gap in the temporal bone. How was the recovery? Did the facial nerve damage make your recovery more difficult? Have you had to have additional surgeries? The dr says it will be a 2-3 week recovery. Is there anything I can do to make the surgery / recovery easier?

      Thanks for any input you can give.

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    • Posted

      Hey there I just got diagnosed with cholesteatoma yesterday and still have to go for a ct scan to see how bad this is.. But how did your surgery go? How's ur hearing? I started reading up on the internet and scaring myself lol...

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    • Posted

      Hi Patti,

      My surgery went very well. It was 6 hours long.  I am about 10 weeks post op and my hearing is definitely improved.  I have a little drainage still but it is healing well. The surgeon is very pleased. I go in January to have it tested to see how improved my hearing is.

      Before the operation  I was very nervous about my facial nerve and being able to move the effected side of my face. There is no noticible difference! I can raise my eyebrows and smile! The dr did however have to cut the taste nerve but it had been so destroyed I cant tell! ( about 2 years ago all I could taste was salt - I told my dr and my dentist about my change in taste but they had no idea why that was) I was also very nervous about the fixing / patching of the bone between the ear canal and brain. It was 5 mm. Honestly though the the hardest part of this whole experience is I can never get water in my ear. This is hard especially when washing my hair.  I do have a little system but I still have to be very careful.

      I was very scared since my cholesteastoma was "massive"  but there was no alternative since it is so destructive. I have to have my right ear done in February. The disease process is much less advanced. I am not looking forward to surgery but know what to expect! I am very lucky that I live outside of Boston.  My surgeon is very good and I like her a lot. She is very good at what she does and I trust her. Good luck and don't hesitate to reach out again!

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    • Posted

      Hi Gia,

      I just had my c-toma surgery on Jan 3rd, 2018. My hearing loss has been a gradual thing. I would tell my family doctor on many occasions and she did nothing...she would just say there was wax buildup and she couldn't see my eardrum. In November my hearing declined a lot and she finally sent me to an ENT dr. He told me on the first visit that I had a c-toma.

      By now you would have had your surgery and I hope you've healed well.

      I am only 5 1\2 weeks since surgery. The c-toma had eaten 2 1\2 of the bones needed to hear. I don't know if there will be more surgeries in the future. I can hear if something is against that ear, to a degree.

      Because of my job, I was off work for 5 weeks.

      I have lost my taste in the surgery side. So if anyone has any input on that I would appreciate it.

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  • Posted

    Hello, I had my surgery when I was 11 in 1979. I had all my hearing bones removed. I am completely deaf on my left side. It has almost NEVER bothered me. I have fully adapted to only hearing in one ear. I have thought lately about maybe a hearing aid in the form of a BAHA. Only my close friends even know that I am deaf. I am due now to have a mastoid cavity obliteration but it has been 35 years since my ear operation and I have not had any operations since so having read other peoples stories I do think I am quite lucky to have lasted this long with just the one op. Good luck
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  • Posted

    Hi my son has not had to wear a hearing aid after surgery.  He loss was severe to profound and then after the reconstruction of the bones it went to mild to moderate loss.  However, since the 2nd op he thinks his hearing has got worse and we are in the process of getting this checked.  I have a friend whose daughter is profoundly deaf in one ear and some people don't even realise.  She is a bright girl and doesn't wear an aid.  The only time you really know is she will always put the phone to one ear and sometimes she swaps sides when talking.  Hope all goes well with your surgery.

     

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    • Posted

      My daughter has 70% hearing loss.  We were told that she would be completely deaf as due to complications caused by her disabiility she will need ongoing operations so she would completely lose her hearing.  I have found that she is excellent at lip reading and has developed coping skills.  It was important to teach her techniques in which to communicate.  It is really worth thinking about, even a basic form of signing like makaton can support their ability to communicate.  When a person is hard of hearing they have to put extra effort into understanding what has been said.  My daughter was able to learn BSL, and we learnt it as a family.  This is not okay for everyone so something like makaton can be useful. She had already taught her self lip reading as part of her coping skills, there is a form of lip reading called cued speech.  I was shocked at the level of challenges faced by  a person who used to be able to hear that goes deaf.  It is important to be in touch with the NSDC as they can provide appropriate advice.  It is a process that can be difficult for the hearing family so this sort of support is so important.  I cannot emphasise how important ths is to their emotional well being
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  • Posted

    Hi had 3 surgeries 1998- 2001 my ent dr told me i would not lose maybe 5% of hearing well here 2014 still ear infections vertigo and deaf in that ear,,,
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