Cholesteatoma - any experiences

[dottygamekeeper]

Following an ear infection a few weeks ago I was referred to hospital and identified as having a cholesteatoma in my right ear and am now awaiting surgery to have it removed and a graft to repair it. Has anyone else had experience of this - what was the op like, how quick was your recovery, and are you now able to swim, fly etc?

Just bumping for the day time crowd - anyone?

Hi, would like to let you know that you are not on your own with this. I am in the process of recovering from my op at the moment. This is my third cholesteatoma op. what would you like to know OP ? can give lots of advice, if you are unsure or worried.

Hi thanks for spotting this - am a bit worried that you have just had your third op, I assumed that one would sort it for good. How long were you in hospital for - I have been told one night stay. How did you feel afterwards - were you able to drive, do things normally - I have been told no exercise, gardening etc for two weeks post op, no flying for 3 months. How visible is the scar, as it sounds as if it will be in front of my ear and over the top? Was it very painful post op. And finally, has your hearing improved, stayed the same or deteriorated?

Am anxious about the whole procedure really - dreading the GA, not sure if there is any nerve damage - the consultant says they can't tell until they open me up - and worried about recovery afterwards. Any words of reassurance/advice would be great.

Hi dottygamekeeper,
Try not to panic too much about this -easier said than done, eh?-sometimes only one op may be needed and it may never trouble you again.The good news is that once you have been diagnosed with this,you will be monitored by your ENT specialist for a long time if not for good so that if there is a reoccurance, they will find it and deal with it. They are apparently quite hard to find in the first instance.
In all three op's i was in hospital overnight and out the next day. Sorry in advance for the long post, but i will try to give you as much info as i can about it.All 3 ops were between 4-5 hours in surgery each.They will probably give you some paracetamol and something to stop acid reflux before you go under the knife as you will be under an anasthetic for a while and they will be tilting the op table to work on your cholesteatoma. They are long ops because this is quite delicate surgery and your consultant will want the best possible outcome for you.If you have any concerns about the anesthetic, ask to see them when you are admitted (they will probably come to see you anyway). I was terrified of being sick -bit of a phobia of mine- havent been as yet.
My first 2 ops, right ear then 2 years later left, both were cut in the manner that you describe. the scars are minimal and wont be noticeable once healed.
They will shave a small amount of hair surrounding the ear, but again, unless your hair is very short, wont be too visible.
Pain afterwards ? Not as bad as you think it will be considering the area of your body they are working on. I am a bit of a wuss with pain and i liken it to a dull headache on one side. It will ache as you will have packing in your ear and a tight bandge around your head overnight (comes off before you leave hospital.The fist op i felt awful groggy for a few days afterwards and this was because the anesthetist decided to give me some morphine - not nessasary imo. 2nd op, my anesthetist was wonderful. When i explained to her how i felt after first op, she looked up the notes (that was when i found out about the morphine) and said she would make sure it was different this time. I came round in the recovery room quicker and half an hour later was wandering around the ward with my drip feeling wonderful and wanting to go straight home! What i am trying to say is that every anethetist is different but if you let them know your fears they will try to do their best for you.
Sorry i am digressing. So, no heavy lifting for 2 weeks, do as little as possible and take things steady. I was driving after 2 days this time as my balance has been good. you might find it will take a few days to get your sea legs again ! I too have been told no flying for three months,so i think that is the norm. My hearing after each op has been the same or slightly better. am awaiting the outcome of this third op as i am nearly 2 weeks post op and still have packing in my ear at the moment. Damage to the facial nerve is possible but rare these days as you will have a facial nerve monitor attatched to you to minimise the risk of cutting it during the op. You will most likely find that some things will taste a little different too afterwards as they may have to cut through taste nerves on the side they are operating on, again this is minimal and you will get used to it.
The important thing to keep in your mind at the moment is the reason why they are doing this-to potentially save your life. The best thing has happened already -your cholesteatoma has been found and is going to be eradicated.
Phew!!! Do you mind if i ask how yours was diagnosed? had you suffered chronic ear infections as a child ?

Hi dottygamekeeper,
Try not to panic too much about this -easier said than done, eh?-sometimes only one op may be needed and it may never trouble you again.The good news is that once you have been diagnosed with this,you will be monitored by your ENT specialist for a long time if not for good so that if there is a reoccurance, they will find it and deal with it. They are apparently quite hard to find in the first instance.
In all three op's i was in hospital overnight and out the next day. Sorry in advance for the long post, but i will try to give you as much info as i can about it.All 3 ops were between 4-5 hours in surgery each.They will probably give you some paracetamol and something to stop acid reflux before you go under the knife as you will be under an anasthetic for a while and they will be tilting the op table to work on your cholesteatoma. They are long ops because this is quite delicate surgery and your consultant will want the best possible outcome for you.If you have any concerns about the anesthetic, ask to see them when you are admitted (they will probably come to see you anyway). I was terrified of being sick -bit of a phobia of mine- havent been as yet.
My first 2 ops, right ear then 2 years later left, both were cut in the manner that you describe. the scars are minimal and wont be noticeable once healed.
They will shave a small amount of hair surrounding the ear, but again, unless your hair is very short, wont be too visible.
Pain afterwards ? Not as bad as you think it will be considering the area of your body they are working on. I am a bit of a wuss with pain and i liken it to a dull headache on one side. It will ache as you will have packing in your ear and a tight bandge around your head overnight (comes off before you leave hospital.The fist op i felt awful groggy for a few days afterwards and this was because the anesthetist decided to give me some morphine - not nessasary imo. 2nd op, my anesthetist was wonderful. When i explained to her how i felt after first op, she looked up the notes (that was when i found out about the morphine) and said she would make sure it was different this time. I came round in the recovery room quicker and half an hour later was wandering around the ward with my drip feeling wonderful and wanting to go straight home! What i am trying to say is that every anethetist is different but if you let them know your fears they will try to do their best for you.
Sorry i am digressing. So, no heavy lifting for 2 weeks, do as little as possible and take things steady. I was driving after 2 days this time as my balance has been good. you might find it will take a few days to get your sea legs again ! I too have been told no flying for three months,so i think that is the norm. My hearing after each op has been the same or slightly better. am awaiting the outcome of this third op as i am nearly 2 weeks post op and still have packing in my ear at the moment. Damage to the facial nerve is possible but rare these days as you will have a facial nerve monitor attatched to you to minimise the risk of cutting it during the op. You will most likely find that some things will taste a little different too afterwards as they may have to cut through taste nerves on the side they are operating on, again this is minimal and you will get used to it.
The important thing to keep in your mind at the moment is the reason why they are doing this-to potentially save your life. The best thing has happened already -your cholesteatoma has been found and is going to be eradicated.
Phew!!! Do you mind if i ask how yours was diagnosed? had you suffered chronic ear infections as a child ?

oops posted twice- sorry

Thanks for this - all very useful. Yes, I had lots of ear infections as a child, then at various points in adulthood, but all treated with antibiotics and seemed OK, though I was aware that I was a bit deaf in one ear and at one point someone said they thought I had a perforated ear drum. In my mid twenties I was monitored for a while (every 6 months I think, having microsuction, but nothing untoward). Am now 48 and have had the odd ear infection over the years, last time saw GP for it was 3 years ago until one evening in July my ear started bleeding and on visiting the GP they diagnosed ear infection (though I had no pain) - they asked me to come back a week later, then referred me to ENT as an emergency, and after microsuction a cholesteatoma was diagnosed. Now on list for surgery, have had CT scan though apparently it doesn't give them much info?

Am feeling worried about nerve damage even before the op because I have noticed slight numbness on the same side of my face as the 'bad' ear though the hospital seemed to think it was not necessarily connected. Although I am dreading the op, in some ways I would just rather get it over and done with - not sure how long the NHS waiting list is here, but have just discovered I am covered for it by my PMI - however the consultants secretary is away and despite phoning every day this week no one has got back to me to book in privately, so am not making much progress.

Regarding the numbness, i would be surprised that if the c-toma was damaging your facial nerve that the scan hadnt picked it up. I had 2 ct scans this time round.First one normal scan,then i was recalled 2 days later for another with dye injected to make the scan clearer. I should explain that the op i have just had has been done where i now live in New Zealand. This had been the only time i have had CT scans done. I too had been covered by medical insurance, however, i would have needed to find the first 20% of the total cost of the op - and my consultant said that could run into 20 thousand + dollars if they found that i needed not only an ENT surgeon, but a Neuro surgeon too. So that option was out of the question and i opted for public healthcare. My wait ended up being 6 months and i was classed as "fairly urgent". Longer than the wait on the NHS in the uk for the first 2 op's. If I remember correctly, in both previous cases, the wait was no more than 3 months from being diagnosed to surgery.
Have you looked on the internet for information out there on other peoples experiences yet ? I know that I have become a bit obsessed with doing this as i had never even heard of a c-toma before i was first diagnosed. I think we are quite a rare lot!!!!.There is a facebook page about c-tomas where people write their experiences of it.There are people from all over the world posting -some good, some bad. Dont let it worry you too much.
The waiting is a bit nerve wracking isnt it ? I know just how you are feeling at the moment -sat there thinking that every day that you are waiting that this thing is getting bigger and doing more damage, when the reality is that c-tomas are slow growing and we can have these for years without knowing that they are there. Have you had any dizzy spells at all ? And do you have 'leaky ear' as I like to call it ?.
As PMI is an option for you, keep on trying to get your op done quicker, if only for your own peace of mind so the wait doesnt drive you up the wall.
On the subject of pain, its amazing isnt it that, like you, we have had ear infection after ear infection without any aches or pain since childhood. I remember being around 7 years old and for about 2-3 weeks suddenly going nearly deaf. My mum took me to the local school clinic in the area, who told her that i was probably making it up and attention seeking!!! She says she could kill them now, knowing that they didnt take it seriously, and she feels like she somehow let me down believing them. My hearing came back as suddenly as it left and i had no more episodes of deafness, but ear infections on and off throughout my life. I am surprised that i am not immune to antibiotics due to the amount i have taken over the years!!!
Keep your chin up Dotty and post back soon.

Dotty, foregot to say I will be going back to see my consultant for my post op follow up and to have the packing removed in my ear in a few days time, so i will let you know how it goes so that you have an idea of what usually happpens after surgery.

Thank you ohoh for all this information - it has been good to hear of someone else with the same problem, no-one else seems to have heard of it. The only time I get dizzy is when I go swimming and get water in my ear - obviously since the diagnosis I haven't done this, and am very careful to keep my ear dry at all times. Not sure what you mean by a leaky ear? - occasionally it got a bit gungy but I never thought any thing much about it as it didn't hurt.

Have you been able to swim after your previous ops and if so, how did you keep your ears dry?

I will assume in advance that you will be having a radical mastoidctomy. If so, the sugery you will have will mean that as well as removing the c-toma they may do some repair work on your ear drum and any small bones that have been damaged from the disease.
They will also try to smooth out and make your ear canal wider as once they perform yor surgery your ear will probably not be as self cleaning anymore as it normally would. You will have regular trips to have micro suction done after the op because of this.
Your ear canal is made wider and smoother in order to allow any debris such as wax, keratin etc.to drain freely or be removed easier by microsuction to prevent build up and the risk of another c-toma forming.
Unfortunately I have not done any swimming for the last ten or so years. However, after my 2nd op, I did tell the consultant that i would like to start swimming again and once my ear canals had settled down in regards to their shape, I had a pair of custom ear plugs made on the NHS so that swimming would have been possible again.I never got the chance to use them (swimming was an occasional thing for me) and now they are a bit useless for me due to the third op.
So it is possible for you to swim again, you just might have to wait a short while. Discuss it with your consultant after the op, they will find a solution for you.
You will also need to keep your ear dry when you shower and wash your hair too. I found that smearing some vaseline on a cotton wool ball and sticking it over my ears has been the easiest way way to keep water out when showering or washing my hair. I should point out that in the past i have been a bit lazy about keeping my ears dry and think that has partly caused problems i have had with recurrent ear infections, so please get into the habit of keeping the ear canal dry once surgery has been done and save yourself grief.
Yes, the gunk is the 'leaky ear'.Mine has been pretty bad for a couple of years which prompted me to seek out a consultant otarologist off my own back over here in NZ, as i had been going to the GP who had been prescribing antibiotics for ear infections, and they just wern't having any effect.
He immediatly diagnosed a recurrent c-toma (which i suspected) and this prompted my third op.
Its quite difficult isnt it, when you want to find out about other peoples experiences of it but no-one seems to have heard of it or experienced it ? And because there are no obvious physical symptoms, people around you wont understand how frightening it can be to be on the recieving end of a diagnosis of something you have never heard of.
TBH, we are sometimes given too much information when we are told of risks,complications and possible outcomes of diseases and surgery, as the only reason to give all this information is to fully inform you as a patient so that you dont sue the hospital for non disclosure.