Chloesteatoma as an adult and permanent hearing loss
Posted , 7 users are following.
Hi there,
I am a 25 year old male and have recently been diagnosed with Chloesteatoma in my left ear. My case is a bit different it seems as until July 2015 I had a perfectly good left ear. I picked up a cold and ear infection while on holiday in Spain in July 2015 to which a week or so later I was hearing bells going off in my ear constantly. I was put on three different doses of anti biotics and ear drops between July and October. I began to get white discharge from my ear about a month after I had the infection and this discharge turned yellow a month or so later. It was not until January 2016 that I was able to see a ENT specialist who diagnosed me and this was confirmed with a recent CT scan. I have not had any hearing (besides the bells going off in my ear) since I first got the infection back in July. After I had the CT scan and hearing tests I have been told that my ossicles have been eroded and I am very unlikely to get hearing in my left ear again. The infection has dried a little bit from some ear drops which the ENT specialist gave me and I have an MRI scan this week as they want to determine if surgery is absolutely necessary before going ahead. I have seen two ENT specialists at this NHS hospital. This morning I woke to find my ear slightly wet again and with a tiny bit of blood which prompted me to go and see the hospital to which they assured me that this was normal and can happen.
It it seems as though a lot of people have problems with their ears in childhood which leads to chloesteatoma. Has anyone been in a similar situation to myself? The more information the better.
Note: I had sinus surgery in February 2014 and the CT scan I had in preparation to that operation has shown no signs of chloesteatoma.
Thanks,
0 likes, 34 replies
amylou86 nick23731
Posted
I am 3 weeks post op for cholesteatoma, I had never had an ear infection until 2013. In July 2015 I went to the doctors as my hearing had got worse (I first seen a difference in my hearing back in 2013) for a number of weeks I was given different courses of antibiotics for a nasty ear infection (7 weeks continuous antibiotics). I was due to fly to Spain at the end of August and the doctor said he was fine with me flying but my eardrum could perforate and what to expect. 4 days after my flight home I suffered horrendous pain and a lot of liquid draining from my ear, the doctor confirmed perforation. Time went on and the pain got worse so did the discharge, dizziness and smell. I was referred to ent after kicking up a fuss in the gp's. After 4 trips there being told I did and didn't have a perforated eardrum they decided to put me under a general anaesetic to have a proper look it was then they discovered the cholesteatoma and no perforation. This was the end of Nov.
I have had a few problems since the op with infections and pain and am due to have the last bit of bipp pack removed wed. My consultant basically told me before the op that a op had to be done due to the outcome should it not be removed. I still don't know much about how big/small it was or how much of the mastoid was affected, when I have asked I have just been told it had to be done when it was. Also when asking if I will get my hearing back I have been told I might do but it's to early to tell and we Will cross that bridge when it comes. I can go swimming in around another 3 weeks.
I hope you get the answers your looking for! The nhs can be a pain for appointment times etc but I have been very lucky to have had my op within 4 months of being diagnosed, I think due to the fact I was bothering them so much...it's worth a try
nick23731 amylou86
Posted
it it sounds like we've had a very similar story! I understand your frustrations with NHS and gp's knowing little about this disease, it got me pretty mad at times. I always wonder if I'd checked myself into a&e early on and seen an ENT specialist that things could of been different. Basically mine they think is an infection that got me really good and wiped me completely, the cholesteatoma was minor but ct scans looked like cholesteatoma, I'm pretty thankful it didn't hit my facial nerves as it only just missed this! Balance was wiped too but I'm having no balance issues as apparently my brain adjusts to work off the right side.
How are you feeling now post op? Has any hearing returned?
Hope to to hear from you,
Nick
amylou86 nick23731
Posted
I'm 5 weeks post op now and went for a check up fri and a piece of skin has grown in the cavity, I'm sure that's not the medical term but how it was explained to me, I don't really know what it means and the consultant did say he wasn't pleased about it! He has said it won't ever get as bad as it was as I'm being seen regularly but the impression I got was that it's coming back.
my hearing hasn't returned yet but it may so will wait and see. How are you now? How's the hearing, pain etc?
nick23731 amylou86
Posted
I'm feeling quite good, mild tinnitus, no hearing unfortunately (am going to look into a baha and whether this will benefit me or not) just being very careful not to get my ear wet. The scar has healed perfectly, I still feel my ear is a bit tender up the top and if I move my head too far around I can feel a little pull, guess it's not completely 100% but should get there soon enough,
Keep in touch with how you are getting on! All the best.
Nick
darren03844 nick23731
Posted
nick23731 darren03844
Posted
Yeah I agree gp's could be held more accountable unfortunately it sounds like they follow a basic guideline/template and don't delve as far into issues as they should. I think (touch wood I don't have to) if anything happened to me again I would pay to see a specialist for a consultant to speed things up as time is precious with these things. How is your hearing now and have you got a date for the op?
darren03844 nick23731
Posted
My hearing seems ok in my affected ear but I think that is just because I have got used to it, if I close my other then it is really muffled but in everday life it is fine. Yes I have a date set for the operation it is a week today, I am absolutely bricking it. I do not think it is the thought of them opening my ear drilling etc it is being put to sleep.
I will let you know how it goes.
Camoulin nick23731
Posted
I am a 26 year old female who has had a similar experience I'm some ways as far as I can tell, although I've always had problems with my ears, the cholesteatoma diagnosis seemed to come out of nowhere. Sorry if this comes out really boring but I'll try to cover as much as I can!
I have been deaf on one side (my left side) for as long as I can remember, though presumably there was a time when it wasn't so bad! I remember numerous hearing tests when I was around 4 or 5, which persisted as I got older, but no one ever really seemed bothered about why I was deaf! Doctors would just accept that I couldn't really hear - so in turn I just accepted it also. It was a running joke at uni that I couldn't hear you if you stood on one side of me, which to me now is really bad!
There were reasons offered - glue ear, ear infections, even a 'miss-shapen' ear canal but again no one really did anything about it. I had been given an 'otovent' balloon which is a very attractive nozzle you put to your nostril and attempt to blow the balloon up with your nose. Think as a way of regulating the pressure in your ear canal. This was a hit at uni. Only after repeated visits to my gp when I returned from university and told them I struggled hearing with my job did they decide to try anything and referred me to a consultant.
I had 2 sets of grommets put into my left ear over a couple of years, which seemed to momentarily help after the first was fitted. The second achieved nothing though which began to ring alarm bells. I had also started to get numb parts of the left side of my face (lips and tongue) which I attributed to an infection, not realising this could be linked to the facial nerve.
This is when I was referred to another consultant who began to suspect all was not normal in my inner ear. Even then they missed the possibility of a cholesteatoma and instead scheduled me for a stapedectomy back in October (he thought my bones were simply fused together). They put me under general anaesthetic, went in through my ear drum and that's when they saw the cholesteatoma! As the risks associated with cholesteatoma surgery are different they had to come straight back out and stop the operation.
I was then sent for CT scans to see how far it had progressed and I had my surgery on the 27th April (5 days ago) during one of the days of the junior doctors strikes so I was quite lucky! They went in through my ear drum and also behind my ear. They cleared out the cholesteatoma as far as I am aware and unfused my bones which were apparently covered by 'scar tissue'. Luckily damage to my facial nerve was avoided during surgery which I am thankful for
I haven't struggled too much with pain, although the pulsatative tinnitus has been very annoying! I am also struggling with my balance a lot more than I thought I would. I find that loud tv before bed really makes the tinnitus angry which I'm sure in turn does nothing for the dizziness. I read that swelling 2-3 days after surgery is at its highest, so maybe this will settle down shortly (I hope so!)
It just goes to show how little is known about these things and how hard it can be to get a straight answer for anyone suffering with ear problems. I'm still not sure when my cholesteatoma began or what caused it. Used to do a lot of swimming when I was younger, maybe that's a factor. I'm surprised by how many of you guys on here have had similar experiences considering it's so 'rare'! It makes me think there are a lot of undiagnosed folk out there.
I hope all is well following your treatment.
Best,
Camilla
nick23731 Camoulin
Posted
Apologies for my late reply.
So sorry to hear of your situation, how is the recovery going now?
I agree that there's very little knowledge out there regarding ear problems. I always took my ears for granted and now realise just how much of an impact losing hearing in one ear is, I am struggling in group situations and it drives me mad as I'm a very social person and hate missing what people are saying. How have you come to cope with these situations over the years?
Is is your balance ok post op? The nerves are pretty scary to think how closely related they all are, my balance on my left is gone however I have only minor issues. I've been travelling the last few weeks and have found when I've done lots of walking and I'm hungry and tired I sway a little but nothing major, just takes getting used to. I play cricket so am interested and worried to see if this is going to have any impact once the season starts up. Tinnitus is also horrible isn't it, mine comes and goes and I'd love to know what can be done to reduce this.
I hope all is ok and hopefully hear back from you.
Cheers,
Nick
Camoulin nick23731
Posted
Thanks for your reply
it helps a lot to read about other people's experiences!
Recovery is much better now, thank you! It's been 11 days since the surgery and I'm pretty much back to myself - like you mention, if I get tired I get a little wobbly (or doing things like looking up quickly) but I think this gets better the more you get used to it. Maybe once you start playing cricket again your balance will adjust after a few games? Especially if your brain has been managing with your other ear - fingers crossed for you.
How long after surgery did you get back into any exercise..?
Tinnitus is a real pain that no one really understand until they get it! Do you mostly get it at night when it comes on? Luckily mine has really faded now so I can only hear it if I'm exercising.
With regards to adjusting to life with one ear, I think it must have been tougher for you as you had more of a sudden change.. I naturally tend to position myself when walking so that I can hear people on the good side.. Getting to the right seat in restaurants is also key!! Also, letting people know when you can't hear them helps as you can only say 'pardon?!' so many times without it getting embarrassing - I think 3 is my cut off!
Glad that you're getting on well with travelling - this has got to be a good sign - especially as I'm guessing that involves a few planes?
Best,
Camilla
nick23731 Camoulin
Posted
Thanks for your reply, it does really help hearing of others experiences. Also glad to hear that you're recovering well. I got back into walking around and feeling alright after about a week from memory. I've done a few good hikes and have been fine, just get a bit wobbly but also I don't think I was eating enough on these walks too! I really hope the balance will not be an issue once I get home and start going to the gym and getting back into cricket, fingers crossed it all works out.
I find my tinnitus can come at any time. It never wakes me up at night, though I tend to get it at the end of the day when I'm relaxing and then just whenever it feels like it I guess. Some days it doesn't stop. I remember when I was growing up I would sometimes get a ringing ear very randomly though never thought more about it, I think it's common that a lot of people with good hearing get the odd bit of tinnitus though I can't help but wonder if this was an early sign even though nothing was picked up on a ct scan.
I definitely agree with trying to get a good seat in a restaurant! I can't stand having to keep asking people to repeat themselves however at the same time do not want to really tell everyone I have a hearing difficulty, only my good friends know and I just do my best to get on the right side so I can hear well. Not a bad idea with the 3 times rule thanks. I guess over time I'll learn to accept it more, just hard when a year ago I had perfect hearing..
Have you ever looked into getting a baha to transmit some sound to your other ear? It's something I want to look into once home.
Hope to hear back from you, it's great being able to talk about all of this!
Thanks again!
Nick
Camoulin nick23731
Posted
No worries!
It is really odd to think you had great hearing a year ago - as frustrating as it is for you, it's interesting to speak to someone who has knowledge of what it's like at both ends of the spectrum! Do you ever feel like you can mostly hear the noises inside your own body rather than the outside world..? What's been the biggest change for you? (I know that seems like there'd be an obvious answer to that!)
I used to physically turn my head a lot when listening to someone so they were on my good ear side as there was no way I'd catch what they were saying if not - I think following surgery that might have stopped slightly which is good! (But I don't want to jump the gun just yet!) I have my meeting with the consultant a week tomorrow so will know more then.
Oh, I haven't heard of the Baha, which is pretty disgraceful! I'll give it a Google now - how did you find out about them? Is there a chance you will regain any hearing in the future..?
I have to say I'm pretty much used to not being able to hear on one side and it honestly doesn't bother me too much as I've never known perfect hearing! I think you'll adjust with time to the situation if it stays the same
there are also a couple of benefits when it comes to sleeping as if there's an annoying noise - you can just turn over and block it out! It sounds like a pretty pathetic silver lining but it's come in useful quite a lot!!
One thing I have found difficult is the isolating aspect of deafness - you can't always confidently respond in a group conversation as you can't be 100% sure you're talking about the right thing! You can get laughed at quite a lot which is fine once you're used to it - I think this made me quite shy at times though - plus I think it made me tend to go off into my own world too.
I think you're right with only telling your close friends if you're not comfortable talking about it - people can't always guess you have a disability just by looking at you so you've got the ball in your court with that one
Hope all's well!
Camilla
nick23731 Camoulin
Posted
sorry for my late reply, how did your consultation go? Any improvement?
I think the biggest change besides the obvious has been the increased effort it takes to confidentially hear people, it gets pretty tiring on a night out! I'm always trying to get on the right side so I can hear well, something I never had to think about before now. I also turn my head a lot or sit more directly at people which does help. I don't think I will naturally regain hearing, my options would be the baha which I need to find out more about or there's always hope that one day a method could be developed to gain artificial hearing. I met a robotic engineer travelling who said there are many developments out there for hearing so there's always hope! I'm surprised that no one mentioned a baha to you before? It is supposed to transmit sound across from your good ear but can often override in loud situations.
I know what you mean about struggling to be confident of what you've heard, I find I just have to ask people again to be more clear. Very frustrating.
Hope all is well and hopefully hear back from you.
cheers,
Nick
Guest nick23731
Posted
I'm a 29 year old male and was diagnosed with a cholesteatoma in my left ear about 2 years ago. I had modified radical mastoidectomy, tympanoplasty and also a tonsilectomy 3 weeks ago. Two of my hearing bones were removed and I've been told I'll need to wait 12 months before they can complete the second stage mastoidectomy.
I still have packing and a wick in my ear to facilitiate drainage and it is to be removed next week (24 days after surgery).
At the moment the tinnitus is driving me crazy. It started 36 hours after being discharged from hospital (likely when anaesthetic wore off). I just started using Stilnox (Zolpidem) as it was causing insomnia. I work in engineering and find I cannot concerntrate because of the loud ringing and wooshing sounds since surgery. It's an understatement to say it is driving me crazy.
I knew of the risks but never realised the recovery would be this difficult.
How did you find the recovery and is there anything you did that helped improve your condition?
I'm really hoping getting the packing removed will make a difference.
Any help would be greatly appreciated.
Best,
Kieran
nick23731 Guest
Posted
Very sorry to hear of your condition. The main thing with this disease is that the surgeon gets rid of the infection completely so you have a dry and safe ear. My surgery was different to yours as it was more of a infection and only mild cholesteatoma and it was done in one stage using a laser to evarorate the growth. Fingers crossed i do not need to have another one, I have an MRI scan at the end if this year to monitor progress. I'm still keeping my ear dry and unfortunately no hearing has come back.
I completely understand your frustration with tinnitus. It is absolutely horrible and does impact on your life. I have done a little reading and some common remedies seem to be on diet and lowering stress. I do agree that when I am angry and stressed the tinnitus seems to be worse. Some days I don't notice it much and others it infuriates me. The last few weeks it's been going constantly though some days I can somehow ignore it. When I first got the infection it sounded like I had a fire alarm going off for the first week, I really struggled to handle that.
Have you retained any hearing now you have lost two hearing bones or is your cochlear ok? I have full hearing loss in my left ear which I struggle with everyday now, doing my best to get through it.
In terms of recommendations I would say you just have to try your best to ignore the tinnitus which is a lot easier said than done, you'll have bad and good days. Also in recovery really ensure you're not getting your ear wet at all. Showering is a real pain.
i have also been told that I could see a brain specialist to measure and study your behaviour to see if they can trigger tinnitus however I do need to study this further. I'll also make more of an effort to eat a lot more healthier and see if this improved tinnitus.
Let me know if you have any more questions, happy to try and help.