Just diagnosed

Hi rosalind,

It is completely normal to have fear for surgeries.

The truth be told is that the outcome depends very much on the Dr who is performing the surgery. If the person is doing such surgeries a lot I wouldn't worry too much about it. There are risks to a cholesteotoma surgery. The Dr can do damage to the facial nerve, leaving half of your face paralized. This hardly ever happens though so it's a small risk. No cholesteotoma is the same and it depends in what stage it's in. I personally need to have a second surgery done, six months after the first surgery. One reason is to get the residues out, second reason is that my hearing didn't improve at all. The Dr who does my surgery is doing about 20 of such surgeries a month and has been doing it for quite some time now. I am completely not worried about it anymore. Yes, i'll wake up with quite some pain (this depends per person really) and likely a headache as well from here to Tokyo like last time, but that is remedied soon with some ibuprofin. If the Dr needed to do quite some scraping nearly you balance organ in your ear, you might feel dizzy for a while. I would really ask your Dr after surgery how it went, if some areas were tougher than others, etc etc. In my case I am seeing a Dr who ONLY does ear problems and nothing else. I am 43 and after 10 days I went back to work.

For some people this doesn't work out the same. Key is to gather some more data about the person doing the surgery.

Thanks,

Mipam.

Hi, I was diagnosed in December, and had to travel to see family over Christmas and had the surgery mid Feb.  I was told that this sort of delay is OK - as soon as possible but not immediate.  For me I was told the growth had probably been there a couple of years.

I am now 1 week post surgery.

Unfortunately the surgeon had to take all three of my inner ear bones out, and I cannot hear at all in that ear.  This is the most disturbing thing to me - adapting to being deaf in one ear.  I am hoping that in the next operation (to check for regrowth) the replacement prosthesis return some sound.

Agree that it depends on the surgeon (mine had performed over 1500 ops), but for me it was also the extent of the growth (covering all three inner ear bones) that was a determining factor to the overall result.

 

I was diagnosed in July and didn't have my first surgery until November. Seemed like a terrible long wait but since my hearing bones were already eroded away, I figured a few more months wouldn't make a lot of difference..

If i was you i wouldnt wait as your hearing loss could be worse i was diagnosed when i was 8yrs old (now 21) and my parents did not want to wait for that reason and i came out of it with 80% hearing remaining in my ear which i am so very thankful for. I know it may be an expensive operation but its worth it in the long run.

Hello, I always believe A second opinion is best.  My son @ 10yrs old was diagnosed in Nov and we were able to schedule second opinion & surgery only 3 months later.  You can always request to be put on-call list for any last minute cancellations.  That doesn't hurt either.  It seems usually offices are willing to fit you in once you already have the Cholesteatoma diagnosis so just start making some phone calls first & see what happens.  Our surgeon had the best record of no recurring surguries in our area via our insurance company,  so I think doing your research helps.  I looked at where they went to school, their background & perfomance record to help us choose a surgeon we could be comfortable with.  The prospect of putting my first born under such circumstances was very, very stressful, unnerving situation for our whole family.  The decision was so hard to figure out.   We had never had such circumstances in our family before.  But I knew something had to be done & the quicker, the better.  He needed a better quality of life.  The ear problems were a constant worry & affecting his daily life at school.  I don't know exactly how much mastoid bone had to be removed with our son but I know it was more than we or the surgeon expected.  We didn't even have the CT scan available for the operating doc since we changed offices so quickly.  But all I know is that our doc we chose did everything in ONE surgery (removal, reconstruction, AND he got the titanium hearing bell implant).   It took approx 3 1/2 hrs.  Reocvery was 10days  but he was released with no restrictions because it all went so well.  My son has approx 80% hearing in the effected ear and we couldn't be more pleased to have all this done & over with.  He hadn't heard well for years so getting to 80% is a huge improvement for us.  We still do get check-ups every 6 or so months and he still has 2 tubes in, however all post-surgery tests have shown no more growth!!  All I did was to stress preference of ONE surgery only when I spoke to the doc for our son.  We did know and were told that usually in his condition there are 2 surgeries in the first year.  We did not dwell too much on future unknowns though & crossed that bridge later.  Luckily, all future checkups have been passed with no other consequences or surgeries.  So I highly recommend to do research on the best docs in your area.  Everything should be on-line & usually you can find patient comments for doc too.  Good luck!!  think positive, get it done, it'll be so much for the better I'm sure!

Hi thanks for the replies!! I'm getting it done at a private hospital on the NHS so luckily I don't need to find a surgeon and I've heard only good things about the guy who is doing it. The actual operation doesn't concern me necessarily it's the anaesthetic that worries me coz that's where I've had the issues in previous ops.

The waiting to get the date for my op is also not helping coz the longer I'm waiting the more im getting stressed out!!! Plus it's my 30th birthday on 15th March with a party planned on the 11th so the closer it gets the more worried I am that I'll have to cancel. Already given up on the plan to go abroad for a mini break on my actual birthday coz don't think the cabin pressure will do any good!!

I have the very same thing iv gone deaf in that ear as I didn't no I had it for years, once I had my ct scan I was brought straight in I am undergoing treatment now I will be going back and forward until we are sure it will be gone. Still waiting this operation I wish you all the best. Kim

Hi Rosalind

My name is Amy and im 17 years old

I was diagonised on July 6th 2016, I was rushed to hospital because i kept throwing up and i couldnt walk. After 6 months of ongoing ear infections it took the doctiors from april to July to sort and it got to the stage where i was on so manty drugs i didnt know who i was.

I was told at 5pm on a Thursday what was wrong and i was in surgery by 7;45 the next morning my surgeon told me he had never seen a case this bad. He had to remove all of my bones in my inner ear however i have 20% hearing which is amazing. Recovery for me took about 4 months due to the exceeding damage to my balance but I am fine now. They should opprate within a month because there is a high risk of megistist. Which they will try to resovle. Hope everything goes well. Keep me updated

Amy x