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Chloesteatoma as an adult and permanent hearing loss

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nick23731
nick23731

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

34 Replies

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  • zoby68
    zoby68 nick23731

    Posted

    Hi Nick I'm just recovering from c'toma surgery which I had on 30th January 2016. Your story doesn't sound disimilar from mine .I'm 47 and I never had problems with my ears until October 2013 when all I had was an ear ache, anti-biotics sort of did the trick but by December 2013 I had lost my hearing. This then became a years worth of daily anti-biotics and syringing every few weeks which would clear the hearing temporarily for maybe 2 weeks at a time. Eventually my GP said there was so much debris in my ear canal they couldn't see what was going on. The leakage of oterhea was intermitant and I thought it was water from hairwashing but no this is a sympom to be expected with c'toma. I also had an episode of white pus coming from my ear whilst I was in Spain! Eventually I was sent to ENT at local hospital who ran a plethera of tests only to be told after months that they were going to send me to Guys in London as my c'toma was growing in the external canal and they didn't know how to deal with it locally as its rarer than the extremely rare "normal c'toma". I have spent the past 2 years struggling to get to this dealt with I feel extremely lucky that it shouldn't have any long term effect on my hearing as it was in the external ear canal. The symtoms you describe are exactly the same as mine so all in all you sound pretty "normal". Have a look at ENTkent website as Mr Fairly gives some good info on what to expect he is head of my local ENT team and seems to know what he's talking about. Unfortunately you don't really have any choice about the operation as every peice of info on the net says its the only treatment. You say there was no sign of C'toma on your scan for sinus surgery but they may not have been looking for it as its so rare and very difficult to diagnose. Don't know if I've helped but it helped me being on this forum just knowing I wasn't alone. Best of Luck

    Zoe

    • nick23731
      nick23731 zoby68

      Posted

      Hi Zoe, 

      Thank you for your response and sharing your situation, it is good to hear of other cases similar and that's great you are making a recovery. 

      I had had a look at the ENT Kent website and it was very helpful. Hopefully my MRI will reveal exactly what type of surgery needs to be done. I guess for me it is having the infection removed and then further down the track looking to see if anything can be done to get some hearing back. Other questions I have are quality of life such as swimming, watersports and sport in General which are a big part of my lifestyle.

      Could I please ask how your surgery went and what the recovery has been like? Any post surgery problems?

      Thanks again and and hopefully hear back from you. 

      Cheers,

      Nick 

  • zoby68
    zoby68 nick23731

    Posted

    HI Nick, I know the advise is to keep your ears dry apparently the same rule applies to everyone c'toma or not. A dry ear is a healthy ear apparently. I have been assured that swimming will certainly be ok but use either cotton wool soaked in petroleum jelly to plug your ears or ask for a swim plug to be made for you. They can mould them specifically to the shape of your ear. Other sports shouldn't be a problem unless your balance is affected by damage to your hearing. I won't know how surgery went until I have my dressings out in another 10 days. I'll be honest and say its not massively painful but that may just have been the codeine, paracetamol and ibuprofen regime I left hospital with! Am off the pain meds now though but have unfortunately caught a doozy of a head cold which is not advised but hey what can you do. My ear is swollen and bruised and packed with BIPP which is quite uncomforable but not painful. Initially the ear was completely numb and is still feeling a bit weird but at least I can feel it. I had a facial nerve monitor on during surgery which has left lots of small holes in my neck again not painful just irritating. The wound itself appears to be healing well. I was quite insistant in not having staples so luckily have dissolving stitches. Have lots of strange tinglings and spikes of pain in the ear and around the wound as it heals. I did have a small piece of muscle taken from the side of my head to create an arterial graft in my ear canal this has left me with some probems biting and chewing but this is getting better, was surviving on porridge last week. I don't know if that is normal or just because of where my c'toma was. I believe that part of the op was where it differs from the usual c'toma surgery also for me there is no reconstruction of the hearing mechinism for which I daily count my blessings. I was completely terrified before surgery as there is so little info out there and what there is quite negative. This is a serious disease with serious consequences and hobsons choice for treatment. My advise is to write your questions down as you think of them because you'll never remember them all when your with the consultant unfortunately your GP is unlikely to know much. Keep phoning your consultants secretary to check up appointments and results my local hospital has been a nightmare and for most of my consultations my test results weren't there so you need to be proactive. I even had to go and get results emailed to Guys from my local hospital, the delays have been endless. Please be aware that the NHS 18 week rule starts again everytime they order a new test! I was 51 weeks and 1 day from diagnoses to surgery even with the constant pushing and fighting. Sorry been rambling a bit which must mean Im getting better lol. 
    • nick23731
      nick23731 zoby68

      Posted

      Hi Zoe, 

      thanks again for for your message. I hope your recovery is going well. 

      I have been doing a lot of research and came across a Doctor from Gloucester called Dr Hamilton who seems to be highly regarded. He has developed a laser technique and a few other variation in the operation which seem to have vast improvements compared to the standard operation. Was a laser used for your operation? 

      He he has helped people with ossicle damage gain hearing again so I thought it was worth contacting him to get a second opinion. I am seeing him on the 23rd and should see my NHS surgeon on the 22nd which should then hopefully give me a way forward. If I go private it won't be cheap but if there is any chance of gaining my hearing back and successfully getting rid of this disease then I will do it. 

      I will let you know how I get on. 

      All the best with the recovery. 

      Nick

    • zoby68
      zoby68 nick23731

      Posted

      Good luck Nick, let me know how you get on please I' m all for finding out about alternatives to surgery, although too late for me others read these posts and it would be good to spread the word.

  • darren03844
    darren03844 nick23731

    Posted

    Your case sounds a lot like mine. I noticed my problems with the ear after being on holiday to spain too. Actually your case has scared me a bit as I was told I need a CT scan so the surgeon can see how far it is, this is after confirming I have c'toma so now I am thinking it might be bigger than I think sad

     

    • zoby68
      zoby68 darren03844

      Posted

      Hi Darren I had ear problems a year before I went to Spain it was just unfortunate that my infection was at its worst then.

      Once I was under ENT ,which was after Spain, things were a

      lot better as they were managing things then. CT is standard

      diagnostics for c'toma, takes a few minutes and helps the

      surgeon to know what they're up against. Try not to be scaredas c' toma are slow growing and benign. I don' t think my story is very typical and I stopped posting on here for awhile as my c'toma is " in the wrong place" so I don't ( touch wood) face

      the same problems with hearing as others on here so feel a bit lame lamenting my condition when others have such terrible outcome as hearing loss. There are some really inspiring

      stories on here that may help you, although I think we're all

      scared because what's the chances of meeting someone else with this condition, not like we have a lot to draw on is it? I will suggest looking up a young woman called Bethmarie on this

      forum she is inspirational and really happy to talk. Good luck,

      keep talking and please try not to panic.

    • darren03844
      darren03844 zoby68

      Posted

      Thanks Zoby. Do you think the spanish water has something to do with it? Might be thinking over the top their but a few cases from reading occur after a holiday in spain. Guess we are just susceptible to bacteria in our ear. Thank you for letting me know a CT scan is normal that has put my mind at rest.

      Do you may me asking how long have you had it? Well known since diagnosed.

       

    • darren03844
      darren03844 zoby68

      Posted

      By the way already had the CT scan been for my pre op assessment passed all that so now just waiting for the op. To be honest I am more scared about being put to sleep.
    • zoby68
      zoby68 darren03844

      Posted

      Hi Darren no I don't think Spanish water is responsible, from what I gather this is an auto-immune condition which means your body is doing it to itself .As I said I was having problems a year before I went to Spain. The aneastastist will talk to you about going to sleep and what they will be doing to keep you safe during the operation, I have had 7 aneastetics in my lifetime and I'm still here, so try not to worry, the professionals know what they're doing they do it everyday. 

       

    • darren03844
      darren03844 zoby68

      Posted

      Cheers zoby I know they are very good at what they do and apparently it has never been safer to be put to sleep. I was put to sleep a few times as a kid to fix my legs after bad breaks I think that is what is making me nervous.

       

  • nick23731
    nick23731

    Posted

    Hi Darren, 

    sorry to to hear you are going through the same condition. I feel your frustrations with GP's. I feel their knowledge on these conditions are not great and the easy fix is to prescribe anti biotics. I just wish I knew it was serious as at the time the doctors were so relaxed and said just take the pills, hardly a mention about keeping the ear dry and I then went on another holiday in Croatia where I did plenty of swimming. If only I knew the seriousness at the time things could have been different and I should have been referred to a ENT specialist far sooner. 

    I haven't suffered headaches, just hearing loss and tinnitus. The discharge stopped a month or so ago after I was given drops from the ENT. I have an MRI scan tomorrow and then see the NHS surgeon on the 22nd and am getting a second opinion from a surgeon in Gloucester on the 23rd. He sounds like he knows what he is doing so I'm hoping there is still some hope of retaining my hearing but am also realistic. 

    Keep in touch. 

    Nick

    • darren03844
      darren03844 nick23731

      Posted

      Sorry to hear about your condition nick. I agreee GP'S seem to be useless with this condition but I guess they are a jack of all trades. No offence to them but they should listen to us instead of throwing out antibiotics.

      Is your vist to Mr John Hamilton? If so I have read nothing but good things about him.

    • nick23731
      nick23731 darren03844

      Posted

      Thanks Darren, yes anti biotics seem to be their easy fix for everything. 

      yes, appointment is with Dr Hamilton, I've read a lot of good things about him so am looking forward to meeting him and I'm sure it will be a bit of piece of mind knowing I have explored every avenue once I see him. I feel a lot of confident seeing him than a NHS surgeon, who I'm sure is very good, but Dr Hamilton seems a lot more qualified in this condition. 

  • nick23731
    nick23731

    Posted

    Hi guys, 

    Just to let you know, I had my surgery last Wednesday with Dr Hamilton to remove the chloesteatoma. The surgery went well however I only had a mild case of chloesteatoma and what was thought to be chloesteatoma on the ct and MRI scans was infact a significant amount of scar tissue which had rapidly eroded through my hearing bones and balance organ. I am told that this is extremely odd and he has not come across anything like this before. It seems as when I first had the ear infection that this spread and damaged my bones so quickly that the damage was probably done in the first few weeks. One ossicle was completely eroded and another was half eroded and was removed in surgery. I now have one ossicle, unsure about the cochlear at this stage, I haven't had hearing since august though there is the faintest of hopes that I may get some hearing now all of the scar tissue and chloesteatoma is out. I'm feeling quite relieved that I went with Dr Hamilton and not through NHS who I feel probably wouldn't of delved as deep into the problem as Dr Hamilton and also having his laser procedure seems to have removed all of the disease. I'm expected to make a full recovery (besides my hearing) and should be able to go swimming and get the ear wet after three months. I am also feeling quite fortunate as the infection narrowly missed my facial nerves and muscles so I could of been in a much worse condition. My balance organ on the left side has been affected though I have been told that my brain has most likely adapted to using the right side of my balance and this should not cause me too many problems. Trying to think on the bright side as at 25 years old I hope I have a long time left to live and am sure I will be able to adapt, though am also very relieved at what else could have been if this was not detected earlier. A lesson from this I would pass on is to not waste time going back and forth to your GP it seems like they no little about this disease and time is precious with this disease so get yourself to a specialist as quickly as possible if you have any of the symptoms. Feel free to ask me any questions about the surgery, it took four hours and I woke feeling fine, just a little drowsy. I get the stitches out tomorrow and am being very careful not to get the ear anywhere near water. 

    Cheers,

    Nick

    • Becky157
      Becky157 nick23731

      Posted

      Glad the surgery went well. I had surgery 37 years ago for the same thing. I have recently (18months ago) had a mastoid cavity obliteration operation. My surgeon Mr Patel was brilliant. I had the obliteration done at st Georges in tooting. I only have to see him now once a year. Brilliant news. I can swim and get my ears wet which I couldn't do until 18 months ago. I took my kids snorkelling for the first time last year.

      I am deaf on my left side but Mr Patel reconstructed my hearing snd I can now have a hearing aid which was really exciting bearing in mind I haven't heard on that side dince I was 11 I am now 47!

      Hope all remains well with you and you make a full and speedy recovery

    • nick23731
      nick23731 Becky157

      Posted

      Hi Becky, sorry I've been slow to reply! Am backpacking around Europe. That's fantastic news that you are able to get your hearing back! What caused you to lose your hearing 37yrs ago if you don't mind me asking? And is this procedure something new which was not available back then? 

      I saw Dr Hamilton on April 11 and all was positive with the healing. I've just been very careful to not get my ear wet at all and need to remain doing this for three months, though I'll probably do this for longer. 

      In terms of only hearing in one ear how did you find this and did you get more used to it and accepting over time? My biggest/frustrating issue is being stuck on the left side of people in group environments and only hearing bits of what they are saying and I get frustrated having to ask people to repeat themselves as I feel I am being annoying.. In most environments I'm not too bad just in loud setting like pubs etc I struggle which is annoying as I am very social and love talking to people. 

      I'm wondering whether lip reading courses could be handy and although unlikely, there's always hope that some technology could come up in time to fix my cochlear and return hearing. Just a very unfortunate thing to happen to me though I remind myself that there are people in far worse situations than me.

      On a side note, have you had issues with tinnitus also? 

      Hopefully  hear back from you! 

      Nick

       

    • Becky157
      Becky157 nick23731

      Posted

      Hi nick

      fantastic news on the healing front. It was probably easier when I was 11 to lose my hearing than it is when you are an adult. All my friends new what side to sit on so I could hear, pubs are the worse as they are so noisey. I had to have my eardrum removed when I was 11 because of the c'toma. I had this procedure done in 2014 called a mastoid obliteration. This blocked the hole that was made by the c'toma and Mr Patel also made a new eardrum from my tragus and made some new hearing bits, he was dissapointed that he couldn't restore my hearing fully but I can now have a hearing aid.  Have you looked into having a bone anchored hearing ear? I had thought of lip reading lessons but over time you can learn to pick up words etc.. I luckily don't have tinnitus. Enjoy your backpacking round Europe and stay ssafe.

      Becky

    • nick23731
      nick23731 Becky157

      Posted

      Hi Becky, 

      Yes I guess when you are younger you can adjust easier but still unlucky to get at any age! I still struggle to believe that a year ago I always talked into phones with my left ear and now can't hear a thing. Is that bone anchored implant the baha? I've been told that I could do this however it may override in loud situations, though once home I'll discuss with the surgeon if this could work. Simple things like walking down the street talking to friends on either side could be fixed by a baha I guess which would be fantastic. 

      Thanks! Will do! 

      Cheers,

      Nick

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