worried about cholesteatoma op

hi,

i have had this op 3 times and it does get longer with each one. however the recovery is brilliant. there are obvilously some bit that could go wrong but chances are very minimal.

you will be fine and back to normal very soon

good luck xx

Hi Chris,

I had the same issues as you and had the operation carried out on the 24th of June.

My symptoms were relatively the same, loss of hearing, whooshing noise, loss of taste and constant infection.

All I can say is that the proceedure lasts about 2-3 hours and you will be in hospital for 1 night. I had whats called the combined approach in which they go through your ear and also drill behind the ear to remove the growth. The pain is bearable and I was back to work after 2 weeks. My main issue after surgery was the ear discharge, very annoying!

I had a followup appointment last week in which they took out all the packing ( lots of it ) and informed me that they managed to get all the growth out so there would be no need for follow up surgery. They did enlarge my ear hole so that they can keep a good eye on it but that is hatdly noticeable.

In summary it was no way near as bad as I thought, and I am now back at work and doing everything that I used to do.

I hope this puts your mind at rest a bit, if you have any questions please ask as I may be able to give you some sort of answer. Another good source of info is cholesteatoma.net.

Let me know how it goes,

Adrian.

[quote:738650056c=\"Adrian \"]Hi Chris,

I had the same issues as you and had the operation carried out on the 24th of June.

My symptoms were relatively the same, loss of hearing, whooshing noise, loss of taste and constant infection.

All I can say is that the proceedure lasts about 2-3 hours and you will be in hospital for 1 night. I had whats called the combined approach in which they go through your ear and also drill behind the ear to remove the growth. The pain is bearable and I was back to work after 2 weeks. My main issue after surgery was the ear discharge, very annoying!

I had a followup appointment last week in which they took out all the packing ( lots of it ) and informed me that they managed to get all the growth out so there would be no need for follow up surgery. They did enlarge my ear hole so that they can keep a good eye on it but that is hatdly noticeable.

In summary it was no way near as bad as I thought, and I am now back at work and doing everything that I used to do.

I hope this puts your mind at rest a bit, if you have any questions please ask as I may be able to give you some sort of answer. Another good source of info is cholesteatoma.net.

Let me know how it goes,

Adrian.[/quote:738650056c]

Hey, I had the same op and I am currently in aftercare, I have a follow up appointment with the doc in about ten days. So last night I accidently pulled out a bit of the dressing (maybe a centermetre or less) when I was checking out the cotton wool in my ear, do you think this is anything to be worried about? I really don't need for this to be infected again, what was your experience in aftercare at home or whatever?

Hi,

The surgeon advised me that if some of the packing came out it was not too much of an issue. They put a hell of a lot in there. There is usually about 4 bits, 3 short and 1 really long so 1 bit should not be a problem.

If you are still unsure, give the hospital a ring, i'm sure they will let you know.

Adrian.

thank you adrian.

my pre opp is on the 30th of sept. i'll let you know how it go's

chris[/b]

[quote:a500544c49=\"chris't' \"]thank you adrian.

my pre opp is on the 30th of sept. i'll let you know how it go's

chris[/b][/quote:a500544c49]

oh, adrian

did you have any bleeding from your ear? i have several times. freaked me right out the first time it happened!

thanks, chris

No, I had no bleeding, just smelly discharge. Good luck for the end of the month.

thank you adrian. still no news as after my appointment (on 30th sept) i've been left dissapointed as i've STILL not been given any opp date! i'm now experencing extreem dizziness and am not allowed to drive! i'm on tables to help with this, but there making me very drowsy. I have yet another hospital appointment on the 12th oct. lets hope i get some more news this time eh?

Sorry to hear you've had such a bad time mate. Hope it gets sorted soon. Keep me posted.

Adrian.

reading your post i hope your op isnt as long as mine ive had 2 cholesteatomas removed in 2 years and spent a total of 16 and a half hours on the operating table and 2 years after the last op im worse off now than before.Never really had much pain but now the pain is severe throw on top some vertigo with sickness oh and cant forget that god awful tinnitus all i can say is good luck

Hi Chris,

Your symptons are identical to what i first experienced when I first got cholesteatoma.  Mine started with whooshing in the ear followed by bad pain, then dizziness.  My GP like yours did not help as he kept telling me it was an ear infection and ended up giving me 6 months supply pain killers & should have sent me to a ear specialist!  After giving up with my doctors I looked up a hospital with a walk in ENT clinic and self admitted myself.  My dizziness was so bad I had to crawl across the floor to the clinic as by this point I was unable to stand up.  I was immediately put in a  hospital bed (with intravenus antibioitics) and made to wait a week for an operation to remove the cholesteatoma.  Possibly due to the time my GP wasted I ended up losing my hearing in that ear.  I was told that the dizziness, which eventaully gave me a spin attack(vertigo), was possibly due to the cholesteatoma getting across to my choclea.  It may be worth pushing them for an op' date or even doing what I did and self admitting.  Take care, SteveM  

Everyone here has success stories and I know you're trying to feel better about this but I need to share mine, surgery might be a big mistake for you

I’ve been having problems with my left ear since 2011 (4 years), constant ear infections, anti biotics and ENT visits. As a (previous) avid swimmer, I’d taken to using ear plugs as part of my daily regime since late 2012. I’d tried every type of ear plug bar the specially moulded ones, whether I was going for a shower or swim or visit to the steam room, I’d always have some kind of ear plug to block water getting in my ear.

In late 2014, I had a polyp removed from my left ear, a painless procedure done under general anaesthetic. After this, I had a follow up appointment with my ENT who told me I was developing a cholesteatoma and will need to have it removed. At the time, all I was worried about was being able to get back in the water, he assured me that I will be able to swim again, once the ear canal returns to a normal state post-surgery and I have specially designed ear plugs made. He did mention that I will never be able to go diving as the pressure could cause complications in my inner ear.

On Tuesday 30/12/14, I had an appointment to see my ENT specialist to finalise a date for surgery. I had done hours of research on the disease at this stage and was desperate to know if the operation was going to leave my ear canal wall intact, which would allow me to swim again. He told me that the type of surgery depended on how developed the cholesteatoma is and surgery was the only way to find out. I asked him if surgery was the only option, he half-laughed when he told me that the only way surgery is not an option is if I were in my 60s or older as the disease wouldn’t affect my life expectancy, as a man in his early 20s, if the disease is not removed it could meningitis, deafness, facial paralysis and death. He explained the risks of the procedure, which contain the entire list of not having the operation done. He half-laughed again and assured me that the risk of any of the aforementioned were miniscule as part of the surgery but almost certain in later years if the surgery was not done. I didn’t have much of a choice, I had to go through with it.

I had the surgery done on Monday 5/01/15, apart from the polyp removal the year before, I always awake from surgery in severe pain, I told to anaesthesiologist, my ENT and the nurses this and they assured me that it is a relatively painless procedure. I awoke a few hours later in recovery, the pain was beyond anything I had imagined it would be.

I can only remember bits and pieces of the rest of that day. I don’t remember being wheeled back to the ward. I realised there was a large bandage across my head, running from the top of the left side around to the right side of my jaw. I spent that night stuck in a horrible cycle of sleeping for 30 minutes or so then waking up to moan in pain.

On Tuesday 6/01/15, at around 10AM the ENT visited me and told me that I could go home at some point in the day. They checked to see if my face was paralysed and whether or not I had gone deaf in the operated ear. My face moved just fine and I could hear them scratching at my bandage through the inflamed tissue in my head. The ENT then cut the bloody bandage off my head. I was then told that the operation had been a canal wall up procedure and had been successful. I was being discharged with no anti-biotics, the only advice the ENT gave me was to keep my ear dry, I was told to return a week later on Tuesday 13/01/15. I was unbelievably relieved until I saw my face in the bathroom mirror, my left ear looked like it was sliding off my face, it stuck out a lot more and pointed at a different angle to my right ear, I put it down to the inflammation behind my ear, my head was swelling up to an unnerving degree but the doctors and nurses seemed to think it was normal. Hours later, I was given my discharge form and return appointment. The pain was still very intense, almost too blinding to walk with but I was told to take paracetamol and it should die down after a couple of days. I wasted no time in getting out of the hospital when I was told I could leave, I got my things and walked out and tried to forget everything that had happened in there. I was looking forward to going back to work the following Monday 12/01/15. I couldn’t sleep a bit that night, I just kept myself busy by reading but sometimes the pain was so bad all I could do was cradle my head in both hands and stifle moans and tears.

Wednesday 7/01/15, I removed the dressing the ENT had left in my ear this morning. It was so caked with dried blood and pus that it felt like I had taken away part of the inside of my ear when I pulled it out. I felt dizzy for a few hours afterwards and noticed that my ear was filled with dried blood. The ENT never mentioned anything like this happening but he only spent about 5 minutes with me while I was lucid. I remember feeling pain and feeling very cold even with two blankets and jackets on. I spent the majority of this day in bed.

Thursday 8/01/15 was much the same as Wednesday, lots of pain that didn’t seem to be subsiding. At this stage I was on at least 4000mg of paracetamol a day

Friday 9/01/15, I booked another week off work this morning as I clearly wasn’t getting any better. I went to my GP on the off-chance that something was going wrong with my ear. He said it was severely infected, he even brought a colleague in from another patient to have a look, he explained what had happened to me and she gasped when she looked in my ear, she said she'd never seen anything like it. I felt as helpless as a child. My GP gave me painkillers and anti-biotics and told me to contact him if my symptoms get worse, unless it starts to improve then I need to go back to hospital. I spent a few minutes later that day clearing a mess of red debris from my ear until I hit a slow flow of foul smelling discharge, varying in colour from green to red. The position of my ear is still no better than it was the day of the surgery, it points outwards instead of backwards, downwards instead of upwards. It’s taken all semblance of symmetry from my face. I plan on calling the ENT tomorrow as I feel like I’m only getting worse since the surgery.

I know this was posted some time ago however i thought the more experiences people can have access too the more rounded our knowledge on this subject will become.

Two years ago i saw my GP who like everyone else assumed my perforated ear drum may perhaps be a common source of infection in my ear, I was having slight hearing issues a bit of pain nothing serious, it just caught my curiosity. Of course i was put on a round of anti biotics which did nothing. Eventually Feb 2014 I had the most painful ear infection it had me curled up in a ball, I was literally clenching my hands into a fist from the agony for two weeks. Very swiftly the hearing in my left ear (the only one i have issues with to be clear) went from slight loss to total. So I told my GP, so we did a round of hearing tests to find out I couldn't hear anything from my left ear (how surprised i was.......). Long story short I know everyone has experienced some frustration with having a cholesteatoma being recognised, the unfortunate fact is a GP may see one case every 10 to 15 years and with hundreds of ear infections a week I completely sympathise with the overlooking of this terrible little ear disease.

So by Decemeber i had been diagnosed by the ENT finally with a cholesteatoma, i had a polyp in my ear too which was taken out there and then no anaesthetic for that one, mildy unpleasant but bearable.

My surgery for radical mastoidectmy was booked for 25th feb. The ENT specialist told me from a CT scan I had on the same day as my polyp removal that the extent of the cholesteatoma looked likely i would not get any hearing back. I must admit I took this better than I thought I had never considered I would lose my hearing from this I assumed it was temporary. A necessary sacrifice to ensure my overall health whats the big deal...

So the Op took place it took 3 hours, I awoke to be told everything had gone well, as expected the cholesteatoma had bested my poor ossicles and nothing remained except a part of the hammer I believe which was removed as to not encourage growth of another cholesteatoma. 

I took about four hours to come round to a point where i felt confident enough to walk etc. the nurses and doctors satisfied with my recovery discharged me, Again like everyone else I wore a headbandage for 24 hours which my unwilling sister had to remove the next day to her great joy.

Everything seems to be as dictated to me by the doctor, I have a Bipp dressing my ear so discharge is to be expected however its comforting when it smells medicinal and not that unique odour we aquire pre Op with discharge. Although the discharge from this dressing seems fairly relentless, again on my own research it's biodegradable I can only assume that is what constitutes for the amount weeping from my ear. 

My Op was on wednesday morning, it's now Monday morning I must admit perhaps i'm not one for taking pain although I think I can take my fair share ( 26 yr old male who has had enough injuries to gauge pain) but the pain is quite unbearable still. I feel Im writing this to take my mind from it but it really grips you!

I've been taking 4000mg co-codamol for four days, it ebbs the pain but I can't say it truly relieves you from it. My lowest point was earlier today it had me in tears, I think the culmination of exhaustion, Tinnitus, constipation (side effect of codamol) and shear stabbing pain absolutely overwhelmed me. My pain killers have run out but I was told, and read in some literature about cholesteatoma recovery that the pain following this surgery isn't too bad. Perhaps we are all affected differently. I do not think my pain is due to an infection as far as we can tell anyway. I'm having my stiches out on wednesday and will raise the issue then. Until then I will grin and bear it. Positive thinking has helped more than anything though, I truly sympathise with everyone over this issue. Such a tiny scar behind your ear makes it look so harmless but what is happening in regards to noise and pain on the inside is only understood by those whio have gone through it. I hope this helps in any way, reading other testimonies and experiences helped me get some closure. How to get some sleep though haha I really hope I'm nearing the end of this. Good luck everyone X