External canal cholesteatoma anyone?

Thank you for your support. I must agree, I feel very lucky to

have been born in the UK always have when it comes to

medical and educational matters. I never realized Australia

treated their older generation so awfully.Age shouldn't even

come into it as far as I'm concerned, if you are fit for surgery it should be done. Unfortunately Utopia doesn't exist which ever side of the world you're from! I think part of the reason I

posted on here is that I feel I'm boring everyone I know to

death with this just trying to get them to understand what this

invisible disease is like to live with. I'm a 47 year old mother of 3, working full time, just trying to get on with it really. I am by

nature a very positive person and tell myself often things could be much worse I could have been diagnosed with worse. It's

just that there's even less info on external c'toma than the

normal type and was hoping someone here may have

experienced the same. I wish you the very best of luck and if

you just want to chat anytime I will be happy to. Take care

A problem shared is a problem halved.  It's helpful to chat with fellow sufferers.  This Site has helped me come to terms with my particular problem, and I have stopped feeling so 'sorry for myself' over a problem that I may never get to fight.  Our Pensioner Health Scheme is, in general, pretty good.  My hubby and I have both had totally free surgery in Private Hospitals, under the Pensioner Benefits Scheme.  I'll be having a couple of melanomas removed on 24th of this month ... in  Private Hospital ... with the choice of local anaesthetic or full anaesthetic totally without charge.  It would seem that it's just E.N.T Surgeons who are a bit 'selective'.  And I suppose the problem is presumed less 'urgent' than malignant melanomas.  After reading some people's experiences with cholesteatoma surgery, I'm in no hurry to get mine dealt with.  I'm in no pain, and am managing

well enough with my hearing aids.  Thank you for sharing your story here.  It's good to know people understand, and, in your case, know more about the problem and can advise me.  Let's keep in touch.  Cheers!  Jeniffer aka Court Jester.

Hi

 

I am 45 years old, based in East Sussex UK. My problems started over 2 years ago, I think caused by a faulty headset. I work ironically as a medical secretary and where I used to work, they supplied me with inadequate equipment, so I had a headset which was missing a sponge, which meant I had a hard bit of plastic, shaped like a cone which went in my ear, which hurt my ear.

Shortly afterwards I got a feeling of my ear being blocked. I thought it was wax, so went to see the nurse to get my ear syringed. The nurse was surprised my ear felt blocked as there was little wax which prompted me to see my GP.

 

The GP thought I might have a problem with my Eustachian tube so prescribed a steroid nasal spray. That didn’t work so I returned to the GP who suspected otitis media with effusion as he thought my ear drum looked dull and subsequently referred me to ENT.

 

By the time my ENT appointment came through, sod’s law a few days before, my ear cleared. Nevertheless, I attended the ENT appointment, I had hearing tests and a pressure test which came back fine and was subsequently discharged. 3 days later my ear felt blocked again and my GP subsequently re-referred me back to ENT.

 

Whilst waiting for the ENT appointment, I then developed a full-blown ear infection i.e. ear discharging, itching, pain and a feeling of pressure. I went back to the GP who suspected otitis externa and was prescribed anti-biotic drops. This failed to alleviate, I actually felt worse, more pain and developed fluid on my cheek, perhaps as my ear canal had closed?

Went back to the GP who prescribed me more anti-biotic drops and took a swab. On next visit to GP as still not resolved, swab came back as fungal infection (probably caused by prolonged use of anti-biotic drops) so prescribed me anti-fungal drops. Eventually got appointment with ENT consultant who micro suctioned my ears, telling me there was “a huge amount of debris” in there and prescribed me more anti-biotic drops. I felt confident that this would resolve things as now the debris had been cleared, the drops may reach the parts they were meant to reach. I was advised to cancel my next appointment if everything had resolved. Things did resolve, however I still had a strange tingling sensation above my ear, so decided to keep my ENT appointment. On my next visit to ENT consultant, I thought I would be discharged, but in fact was told I had a small area of exposed bone in my ear canal and that he would need to “hit it hard”. I had my ears micro suctioned again and was prescribed more anti-biotic drops and steroid drops. On the next visit, unfortunately the Consultant wasn’t available and I saw the reg who didn’t seem to be able to micro suction ears but told me he was unable to see if the skin had grown back in my ear canal as it was coated in a film from the drops. He advised me the infection had cleared and just to continue with the steroid drops for another 2 weeks. On my next visit, I saw the Consultant who micro suctioned my ear, which on this occasion was extremely painful and then he gave the diagnosis of an ear canal cholesteatoma and advised that I would need a CT scan and a canaloplasty for which he put me on the waiting list. I had my CT scan last Monday and am hoping it is confined to the ear canal. I saw the Consultant last Dec 2016 and have been advised the op is likely to be scheduled for June/July 2017.

 

I’ve been advised you get signed off sick for 2 weeks but am wondering how this works, as I hear you don’t get the ear packing removed until 3 weeks post op and considering I use headphones for my line of work, do not see how it would be feasible to return to work after 2 weeks with ear packing still in situ?

 

Whilst I am grateful my cholesteatoma is in the ear canal rather than the middle ear, where it could cause problems to my hearing, I am nonetheless still anxious about the results of the CT scan and the op itself.

 

Symptoms currently are of tinnitus, occasionally ear drum throbbing/pain and a weird tingling sensation above my ear.

 

I would be very interested to hear how you got on (excuse the pun!) It has been 2 years domintated by ear problems!

 

 

Hi

?Thanks for your response and I am so sorry that you had such a rough time. I had my op last Thursday, and I have been told that it was caught early and that it was confined to the ear canal. Nonetheless, I would like everybody who has any symptoms of an ear infection to get it checked out. If there is an cholestetoma, than the earlier it is detected the better. I am now nearing a week after surgery. I awoke from the anaesthetic to a huge pressure bandage around my head which was very uncomfortable and I spent a sleepless night with a thumping ear and discomfort. However it has since improved. I was scared when I awoke from the anaesthetic as I found I couldn't close or wink my eye on the affected side but all OK now. However, there is tightness around the stitches around my ear which makes smiling uncomfortable, I can't carry anything heavy as this causes pressure on my ear. I can't hear anything as my ear canal is packed and it is uncomfortable. Also, be prepared to expect swelling of the ear, it sticks out at first but gradually improves, swelling on that side of the face and soreness of the neck. I had an incision behind the ear and also widening of the entrance to the ear canal (canalplasty/meatoplasty) and a graft. Have a check up  approx 2 weeks after op and have been told I should expect more ENT checkups and microsuction before my ear becomes self cleaning again. I have been lucky in comparison to others stories, but it is nonetheless not an easy ride.

Hi, glad you are recovering and hopefully everything will return to normal again. I had my check up after surgery and my ear was repacked as it was still draining weeks later and literally dripping down my neck. I also had suction to remove debris I assume but I can say it was not that painful. My eye on the same side still does not wink or close fully even now and I have had some more scans but hopefully nothing is happening again.

I'm discharged now from ent but of course you are correct that if we get ear infections we need to go get it checked asap. I actually saw numerous doctors before my diagnosis and each just thought a simple ear infection. I actually thought I was going crazy as I felt something was wrong seriously or at least I felt I needed reassurance from an Ent specialist. I eventually got seen by one after my hearing went, I had blood in the ear and my face went numb. I was diagnosed on my second visit within a week of the first.

I was also told just before I went to theatre that the surgeon didn't know if it was cancerous or not. I did ask though and he was just being honest.

My head and ear stayed numb for quite some time after and I was very swollen after sleeping flat with fluid building up.

Hope things continue to improve for you.

karen

Hi. I've recently been diagnosed with EECC. I find I have allot of symptoms which I don't know if they are part of the ear problems or I'm making them up! I see the doc next week and will ask but have you had many symptoms before surgery was decided on?? Also I have pretty much always got some eczema on the back of my ears and wondered if this would prevent surgery. Any advice would be gratefully accepted. I've been searching for information for ages and I'm glad I've got here.

Hi

?Main symptoms I experienced were repeated ear infections resistant to treatment which entails feelings of intense pressure, discharge and itching.burning and face swelling up slightly on that side, ie otitis externa symptoms when it was in full flow, after that dull ache and a weird tingling sensation above the ear and a sense of the ear feeling "plugged" and tinnitus. Not sure about the eczema, you will have to ask your consultant? Good luck with it all and as per below, I will see if I can find you that link re to the website that gives you simplified info, it's not easy finding any understanble info on the internet! Let us all know how you got on

 

Hi maria

My symptoms were complicated because I had other things going on on the side of my head I had cholesteatoma. I know when each doctor looked in my ear the comments were

full of white debris

retracted eardrum

perforated eardrum

Full of scabs in ear

so swollen they couldn't see

polyp lesion

My symptoms were a strange vomit smell as I thought when I put my head under water in the bath. I thought it was my skin.

Ear fullness and pressure that I could of ripped my ear open to release it

blood after ear drops

face numbness after ear drops

Dizziness

not being able to hear properly

felt as if insect was in so the nurse syringed it at the surgery but nothing budged. She said to syringe the infection out so it didn't keep reinfecting.

hurt to sleep on

They told me I needed surgery and leaving it would put me at severe risk. I signed for my op on the day of diagnosis. It was extensive and they told me it had near enough hit my brain. I couldn't understand the ct scan revealing scutum bone eroded?

Hi Karen,

   Thanks for giving so much information. I saw to consultant yesterday for a microsuction. I was getting increasing symptoms for the past 2 weeks, but I think it seems that the suction has releived the 'pressure' and  so far I'm feeling better today. The consultant told me my choles... was minor and I felt she sort of didn't beleive I was feeling those symptoms  (more tinnitus, face pain, tingly tongue) I did wonder if it was me over thinking it all but I do think the suction has releived it . I'm 54 and the consultant said I could have the op if I pushed for it but I should be ok for a while. I said I didn't want op for now as there are risks to it anyway. (I also asked about the eczema behind my ear and she said it wouldn't stop the op. Not sure if she was really interested though)  I think my old Mum had this too but was never diagnosed, she was in her 80s when she died. She had tickling in the ear, glands in neck up, hearing loss and discomfort. I think older people might just live with it and never know. Thanks for all the info, it does help me to know what sort of things to expect/feel, then I know I'm not just imagining it. I hope you've got some releif from your problems. Sounds like you've really been through it. Did you manage to work through all the pain/discomfort? Must be so stressful. I worry that it might affect my job, teaching  - rushing around at primary school usually at full pace. Enough to make you dizzy without this added! Ta

Hi Marie

Yes I managed the pain from the cholesteatoma surgery ok. I had microsuction too before my surgery. I also felt relieved and actually thought that was it. It was certainly more comfortable but upon going back the next week I got my diagnosis. I had 3 consultants come in the room trying to microsuction again but they all diagnosed cholesteatoma and it was sort of panic stations tbh. I was rushed for hearing tests, given my papers to sign for op and scheduled for a ct scan.

I was diagnosed end of November and my ct was December and I also had my mouth lazered too in December for a precancerous lesion which needed doing before my ear. My ct results were given to me in early January and my surgery was February. I did try to hold off it but they said it needed doing quickly.

The ct scan told them my scutum bone was eroded and although it did not mean anything to me I googled and apparently its a good sign the cholesteatoma is eating away at things and a good sign it's definitely cholesteatoma.

My surgery was supposed to be through the ear but they did say they would not know for definite until they looked. I asked just before going down theatre if he thought it was actually cancer and he answered he honestly did not know yet.

I came around and had a full mastoid obliteration and was unlucky I was paralysed on the opposite side with ramsay hunt (diagnosed a few days later). My own skull was used to do grafts and I had cartlidge to make eardrum repair. I also had a new ear canal attempted as they say but as yet it's ok. It was widened after too with more packaging as it started to close.

All in all they said I was lucky as my tumour (as they called it after surgery) proved complicated.

The pain from the ramsay hunt hurt most. My cholesteatoma side was numb for a long time. I took tramadol, ibrupropen, paracetamol, high dose steroids, antibiotics, and antivirals lol.I was in la la land.I wanted to work but was signed off and then lost my job for being off. Another story. I got depressed then tbh. I had lots going on but if it had just been the surgery I think I would have managed given the chance.

I suffered pain but like I say, I had a few things all at once with the mouth, the shingles and the surgery.

Wow! You have been through it. Sorry you've had it so bad. Not surprising you got really down, anyone would with all that. I hope you've got through the worst now and can look forward to a brighter time for yourself. I've read up a coouple of articles which talked about a consultant using lazer surgery to get choles.. away with much better results. Do you know if this is what your or all surgeons use now. This dr was in cheltenham and gloustershire. He was leading the way internationally for choles... surgery, but that was in 2010. I wondered if it's always done that way now. 

Hi Marie

Yes I know of the man in Gloucestershire. I asked my gp if he could do mine as I thought you could opt whereabouts you wanted the surgery and I knew he did work nhs but she said she had tried to contact him and he never answered??

I was also told lazer could not do my surgery. I was told it was in my ear canal and then I was also told my scutum bone was eroded so could not understand that as I thought the other type cholesteatoma eroded the scutum. If it was confined to the canal then what was eating my bone?

I was told that my hearing bones may be cut but they would mend them at a later date or maybe during surgery. I was terrified of losing my hearing completely. That is how I got to see this operation that the man in Gloucestershire did.

Also I was told that a hospital closer to my home was better in case things go wrong. I had no choice of the surgery. They told me that if things went wrong at surgery they could mend but if I allowed the cholesteatoma to be it would cause all sorts of things that could not be put right. Like I say, they got my operation papers there for me to sign on the day they actually diagnosed me.

Hi Karen. I know what you mean about getting some info and then it not fully explaining everything and then having more questions. Like you , I thought there was patient choice but in reality prob not. They were probably doing the best for you if your case was urgent.  I do trust my consultant . She's been doing this for a long time. I feel a bit awkward asking her questions though or if she does the lazer surgery etc incase I offend and seem as though I'm not appreciative. At the moment I'm ok, but will have to weight up the balance of pain etc with an op that can give probs too. Take care. I'll post again if I learn anything new or if things change. Thanks for sharing your story, all the best Karen,  Marie.

I wish you well too maria. One thing I forgot to add. Apparently mine was also growing on the face nerve. I had complained to my gp for some time I had thought my face was lopsided on my cholesteatoma side. Of course it was dismissed as this and that. When i got diagnosed he said ifci didnt have surgery my face would certainly collapse. He said if it did during surgery they could mend it. No brained really.

I also had big red blood spots on the roof of my mouth on the cholesteatoma side. I still aren't sure if connected . It was all at the same time as my ear problems. All I know is that my surgery was rushed for some reason and whatever it was I AM grateful for my surgery and my surgeon was fantastic. Just a pity it took so long to be referred to ent and then perhaps it wouldn't have been so complicated.

Yes Karen. I think mine is interferring with the facial nerve a little. I'm thinking it's when the area gets swollen and congested it puts a bit of pressure onto the nerve. I couldn't understand why at first as it's the external ear canal but now I've looked at the anatomy I can see swelling could. The symptoms are not all in my mind. Even though I am a worrier I do tend try to look on the positive side.  Take care. Will be in touch .

I looked at the anatomy of the ear too lol.....not really understandingit though.

At the moment I am still having a fullness problem down the side of my ear to my neck. They really don't know why so they say and I think it's fluidy. I had an ultrasound of my neck last Friday and it was because for years I had a small lymph node up as I can see in the occipital area. It's never changed and never really bothered me tbh but a few weeks ago it turned into an abcess. I went to get antibiotics and my doctor wanted a scan. I waited 5 weeks for a scan so not urgent.

I had thought it was all ok as the radiographer said my salivary glands were ok and she could not see any lymph nodes. Then she said my results would be back with my doctor within 2 days which did seem quickly. Anyway it got there Tuesday and by Wednesday I have received a letter to go see my doctor. Oh no. I just hope it's nothing to do with my ear problem. I just never understood all these things could be related.

They did find infection in my head when they operated too. Maybe infection is showing now.

Just have to wait and see.

It's strange we all have these symptoms but if you ask ent I bet they would say they are not related. Symptoms you can live with unless they are damaging interior structures.

Actually my scan was Monday, results back Tuesday and letter received Wednesday. That's just how bad my mind is lol

Yes, my consultant seemed to dismiss my symptoms becausethe CT showed the ear canal damage is minor, but it's not her head. It's all so complicated. Keep on doing as your told, I'm sure they'll get you sorted in the end. x

Don't know if you will read this maria but my scan has shown a thyroid nodule. I am having a fine needle aspiration on it. When I read lots of my symptoms could be related. I would think it's more underactive if it's causing symptoms because they are my symptoms I have had for so long. It's likely not cancerous but they are doing this just in case as the scan I had done found it. I never related it though.

Just so relieved if it is something because again, I thought I was cracking up.

Hope you are going OK.

Hi Karen,  It sounds like you might be getting somewhere. I hope this means you will get the correct treatment. I don't know anything about thyroid things but is it treated with tablets?

I'm not too bad at the moment with my ear (microsuctioned 3 weeks ago)but I do still feel washed out. I've got another throat virus/heavy cold which I hope doesn't get to my ears. Losing my voice today. I just feel generally run down. Have done for a while. No face/ear  probs at the moment but I've started on loads of vitamin suppliments to try and boost my immune system. Between menopause symtoms, cholest.. and colds and flu, I'm not sure which one is my main problem. So decided on vitamins to cover all. Hope things are picking up for you,   Marie

Marie, I always thought I had an ongoing infection for some time. My white cell count was always high and I was sent to heamotology twice. I had a hidden infection they thought. My face went lopsided as I thought and numb. I tested it with cold keys. It was some time though after suffering a full feeling in my ear and pain when lying on it. My tinitus was a heart beat, pulsating type. I was backwards and forwards for over a year. In fact I thought it must be fungal so I had a clove of garlic sticking out. I didn't put it deep in my ear, just inside enough to try to kill the infection lol.

I still feel low now and when I had this thyroid nodule found I was excited that that could be my cause. It apparently isn't because I had my tsh done and it's come back normal today so a bit more worrying about the nodule as it's another red flag besides whatever the scan found. Apparently if it's abnormal it's better as most probably either over or underactive thyroid.

I need a holiday I think. It's just one thing after another and each time they find things I always think they relate to my symptoms. In fact reading about hypothyroidism I have had most symptoms but always down to depression and anxiety. My neck has been more painful for a few months now but never related it cos it's at the side and down the back of my head. And it's sore down the side where I had my cholesteatoma surgery ....more beneath my ear and into my neck.

I won't be given tablets for my thyroid cos it's functioning normal. Just has a nodule on it so just have to wait now for this biopsy. I don't think they rush because it's very treatable if it's found t be anything.

Hope you are feeling better soon ftom viruses.

Hi Karen, I suppose that's one of our problems,- there are so many structures all about the ear and neck. Then it's hard to know what is what. I hope your ENT consultant gets you sorted. Keep your spirits up, I'm sure you'll get there in the end. Once you get all the checks through then you'll get it sorted.  Marie x