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?
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.
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 appreciated
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?
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?
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.
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.
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
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.
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
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,,,
kk123 - I hope your surgery ended up going well. I had a surgery to remove my cholesteatoma 20 years ago, when I was about 7. The cholesteatoma had removed 2.5 of the 3 bones. The surgery went fine, BUT the surgeon replaced the missing bones with plastic prosthetic bones...in order to complete the surgery they inserted a tube to help with draining. To do all this they obviously have to cut a hole in the eardrum, the problem was that they replaced the skin from the ear drum hole with skin that came from behind my ear (near my scalp). When the tube fell out (through the eardrum), the eardrum never healed itself properly. To this day I still have a hole in my eardrum that continues to get bigger, the hole now covers about 80% of the eardrum and I have approximately that much hearing loss in that ear. I have had surgeries to try and fix the eardrum, but it keeps opening back up. I am familiar with not being able to hear in that ear and it isn't a major problem since I am so used to it now. But I can also not get water in my ear, which is annoying showering etc.
Has anyone else had a similar experience with cholesteatoma surgery leading to the loss of an ear drum and therefore loss of hearing? I am wondering if it is possible to get a hearing aid that helps offset this loss? (if such an aid exists that functions without an eardrum) as the surgeries to replace the ear drum have not worked.
I have just had a mastoid cavity obliteration operation. Whereby they filled the cavity left by the c'toma with muscle. They have created an eardrum using the cartledge from inside my ear. It is still early days to see whether I can hear again or not (not heard in that ear for 35years). I have looked into a BAHA hearing aid which is bone anchored but the doctor has told me to wait to see if this is a success. I will keep you posted
My daughter was finally diagnosed at 16 with a C-Tomato. As an infant/child she had ear infections, but not a whole lot. I brought her to an ENT specialist at around 9/10 years old and she was dismissed as having allergies. It was finally at just before her 16 birthday when she started having blood draining from her ear that we realized that something was very wrong. MRI revealed a golf ball sized C-Toma in her left ear...hearing tests showed about a 25% hearing loss. ENT specialist believes based on size of C-Toma, that she was born with it. Surgery was scheduled for 4 weeks later. After 3 hour surgery, she had ear drum reconstructed using skin from under her arm and C-Toma removed. She was lucky as it was growing downwards towards corrotted artery. Ear bones were almost removed but determined to be okay. A year later at 17, a second surgery to make sure there was no more C-Toma growing was performed. Now at 18 she recently saw doctor and had hearing test...hearing is only a mild loss...about 10%. We consider ourselves very lucky and are optimistic that it will not return. Follow-up in a year. Best of luck to all dealing with this.
Hi Anthony, I had the operation on November 5th. I am still off work till the week after next. It has been a long recovery. The scar behind my ear has healed really well. The surgeon cleaned out all the old diseased bone and muscle and took muscle from the side of my head to fill the cavity. He also removed some cartledge from just inside the ear and made into into an eardrum. Then just top it off he put a titanium rod between my "new"eardrum and the cocklear. It's been extremely odd. I think I sound like I am talking into a bottle and there's been a bit of popping and cracking. I dont think I will get "proper" hearing but there is still some swelling and the inside of the ear is still scabby (nice). But he is extremely pleased and a hearing test will show whether there is any improvement.
I have noticed little things like if I scratch my ear I can "hear" it I don't know whether I can hear it or whether it's the vibration! Time will tell. Just glad it's over now. Next hospital visit 6th February. Can't get it wet yet which is causing grief when washing hair! But once the scabs have healed I should be fine for getting it wet and swimming(I hope), will let you know how hearing test goes.
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.
My heart goes out to any parent having their child go through this. I really could not imagine if it were mine. In fact I would prefer another 10 operations myself than that.
Helo, i had a cholesteatoma mastoidectomy on left earand removal of incus and malleus ( 2 out of 3 bones) however stapes which doc said was the most important one was saved and a titanium rod was placed to connect eardrum and stapes just 1 week ago. I am completely deaf on the left ear and hear faint ringing in ear. Did your ear ever clear up and did your hearing come back? If yes how long did it take. Thank you
Glad your op went ok. Once the ear had settled I had a hearing test and my hearing hadn't changed. But because he had reconstructed my eardrum it meant I can now have a hearing aid, which was never an option before. Had the hearing aid fitted 2 years ago and it made me cry. Hadn't heard in that ear for over 35 years!
I hope yours comes back successfully. Please do let me know