External canal cholesteatoma anyone?

Hi all

?I did find a really good website that simplified things without you having to analyse CT scan data!  I will find the link and send it to you. I went to see the ENT consultant today and had my ear packing removed 2 weeks and 1 day post op. It was very quick and no pain whatsover, now on optimize spray for a week 2 x a day and then just a follow up appt in about 6 weeks time. Still slightly uncomfortable but I can hear after the packing was removed and a lot less uncomfortable, I was told it was very small, hence not so many problems as those that some may have experienced. The moral of the story is, if you have had repeated ear infections- absolutely insist upon being referred to ENT. The GP won't necessarily pick this up, whereas an ENT consultant will, and the earlier it is caught, the better. Good luck Loopyloo and I will send you the link as soon as I find it again, you are right, hardly any info available on the internet!

Thanks so much ! I asked about it and he said they are rare in the ear canal. HaD all the signs of ear infection but swabs taken showed no fungus or infection just loads of cheesy muck in my ear that was microsuctioned every week since the 2nd week of Jan. I have always had problems with my ears -- Today he could see the canal properly for the first time and said there was a small patch of abnormality that is this thing. Is it less invasive when in the ear canal?

Thanks for your info Mieshkha.  My symptoms seem to come and go. If I'm busy at work I don't notice too much but once home and quiet I have felt a tingling at the base of my tiongue, tinnitus (not enough to keep me awake at night), occassional pain when yawn or move my jaw awkwardly, a couple of dizzy spells, uncomfortable feeling in my ear/side of face but non specific. I had a couple of big ear infections but non recently. I'm just wondering if symptoms had to be bad to be operated on. Also when the descision is made to operate, does it takes months on the waiting lists to get seen?  In which time it could be very uncomfortable. Really good to hear peoples/your views as this is so rare. Info tells you about researchetc, but not the actual patients experiances much. Thanks

Hiya. I was told it's a long wait which is disappointing. I have to have a CT scan next appointment. I hope it's tiny and they can just cut it out. I'm a wimp !

Hi

?It's less likely to affect your hearing when its in the ear canal rather than in the middle ear, so that's a bonus! My hearing tests came back fine by the way, although the debris inself blocks the ear canal so can affect the hearing and also my eardrum was very inflamed from infection hence the tinnitus.  So are you already under the ENT consultant or GP. I had a swab taken which showed a fungal infection but this was after I had already had an infection for some time and had been using anti-biotic drips which then makes you more susceptible to a secondary fungal infection. The ENT consultant didn't seem interested in the swab result? Basically when you get an ear canal cholesteatoma, your ear canal stops acting like a conveyor belt, taking stuff out of your ear and instead a pocket or pit forms, so all the debris collects in there and it becomes a vicious cycle and starts behaving like a cyst and grows. Have you had a CT scan yet?

Hi . I had a CT scan before Christmas, and an appt with consultant's registrar 6 weeks ago where he went off to ask consultant if I needed op. I didn't . My next appt is next week and I have lots of questions again. Not sure if I'd rather the op early or later, as still unsure how much of a problem this diagnosis or operation  is on my enjoyment of life and future. I'm getting the impression that every case is different and so then very hard to predict the difficulties on outcome.

 

Hi Marie

​I think the general concensus is that if you are young and fit and healthy then they decide to operate regardless. If you are an older person whereas the rate of progression weighed up with your life expectancy is outweighed, then they will just carry on with microsuction. Have you had a CT scan? Although not always completely accurate, if does give them an idea on how far it has eroded and gives them an idea of how surgery will proceed. If you are young, fit and healthy they will probably decide to operate. Re my waiting list time in the UK, the decision for surgery was made on the 19/12/16 and due to a cancellation, I had my op on the 16/02/17. So not too long a wait. I really hope it all goes well for you and please do let me know how you got on.

Kind regards

Hi Marie, apologies I replied before I got your latest reply!  I hope my latest reply answers this for you?

Thanks Mieshkha. I'll let you know what happens after next week. I'm in the UK too, luckily enough we still have the NHS and dedicated doctors. Thanks for your help.

 

Hi

?A long wait to see ENT or the scan? My doctor doesn't do microsunction, only the consultant did this. But I think this varies. If its any consulation, I am a complete wimp too! Re CT scan gives a rough idea of extent of erosion but again, I was told by my ENT consultant that basically they could carry on microsuctioning but I may eventually need an operation anyway or to go ahead with the op, I think the consencus if that if you are young fit and healthy (PS I am 45 so not a spring chicken but not an old rooser either)

they prefer to operate but if you are a much older person, and they think your life expectancy would be less than the damage caused by the progression of the cholesteatoma they they just carry on microsunctioning (depending on the extent of the erosion). I really hope this helps and please do let me know how you get on!

You are very welcome and please do let me know how you got on and wishing you the very best of luck

Kind regards

Hi mieshkha

No I'm waiting for the CT. He said he will send me an appointment for it. He was interested in the swab as it showed no infection- My ear canal was red and inflamed for 6 weeks but today if was not so inflamed and he could see the abnormality properly. My hearing test was not a problem. I'm 49 so there was loss at the higher pitch but they are not worried. My ear feels full all the time , itchy like a bug in there , it produces massses of cheesy stuff that just sits there.my face is sometimes numb like a cold feeling down my face. I have had lots of infections in the past. Horrible

Hiya

Waiting for a CT scan. He said it could be up to 6 weeks. I've been going to the ent doctor in Brighton since January and having the microsuction. The relief !!

All the best Loopyloo. Sounds like we are similar at the mo. I have microsuction in outpatients dept. Will be in touch with further news or info.

Hi

​How weird, I have been seeing the ENT consultant in Brighton too, who are you under? I have had feelings of numbness too, yes not pleasant at all!

Cool would love to keep in touch and keep each other's pecker up 🤗

Mr Das - who are you seeing ?

The same, you are in very good hands!

Hi zoby68 here sorry to join the discussion so late but I'm I'm Fuerteventura and my WiFi is non existent. I had my surgery 13 months ago and I would say 95% better than without. Still get occasional shooting pains but the feeling has mostly returned to the side of my head and not in constant pain anymore. I think I will always be aware that I had it done cos it feels different but OMG I'm so happy to be nearly sorted. All the symptoms you have are so similar to mine. I had Mr Obholzer at Guys, he's the top man at that hospital but I live in Kent so luckily fall into their catchment. I could also have had Mr Patel at st Georges Tooting. Best of luck to you and once I'm back in the UK next week I'll happily try to answer any of your questions

Hello All,  I've found you on this topic and am grateful for the shared experience.  My 17 year old daughter's surgery was just 4 days ago on 3/3/17, per ENT cholesteastoma was 'gigantic' and required ear canal and mastoid reconstruction, along with midde ear repair for large tear.  Grateful her hearing can hopefully be preserved, but recovery has been difficult so far.  My question is regarding dizziness/ balance following surgery.  It's early days yet but she can't walk across the room without wobbles and a hand on the wall.  Anyne else experience these symptoms, and for how long?  Balance concerns were her first symptom, beginning at 12 with mild vestibular impairment dx but this mass was missed on CT for another issue in 2014 and has doubled in size in that interval. She's so disappointed her return to school will be delayed. Thanks for any information. Best wishes.

Hi Renee,    Sounds like she and you have been through it. I'm seeing the ENT doc tomorrow for another microsuction. Had a CT before Christmas but no mention of surgery yet. I dont really have agreat deal of problems yet (bit of ear ache, slight dizzy feeling, occassioanal sharp pain), and still don't quite understand how and when surgery is decided on. I'll ask lots of questions tomorrow again. How often will your daughter be followed up in the ent dept? It's early days I suppose, maybe once the swelling has reduced it might feel different and come back fine. Hope more people get in touch as the condition is so rare , it seems hard to know the progress of all of it. All the best, Marie

 

Hi there all, Has anyone here had more investigations than just a CT, do they do MRI scans for this?? Just wondering because i didn't think the position of mine on the floor of the external canal would make me feel dizzy.  

Hi Marie I had just had a CT scan, my understanding is it gives them an idea of the cholesteatoma size etc but not always totally accurate/giving full picture.

​Out of interest, did anyone have pain after BIPP packing was removed and if so, for how long for?

Hi

​I was only dizzy immediately after surgery but my ear canal cholesteatoma was very small. I do hope she make a good recovery soon. Best wishes

Thanks Mieshkha,    Next question....does the operation remove all the cholestiatoma? but then I understand it can leave slightly damaged other bits??  ta.

 

Hi Marie

?I think with an ear canal cholesteatoma they can remove all of it, but there is a chance of recurrance,  whereas a middle ear cholesteatoma is more likely to erode structures related to hearing. But an ear canal cholesteatoma can invade the mastoid, temporomandibular joint?, and even the middle ear if left unchecked. I had some of the eroded bone in my ear canal drilled out as well as some healthy bone to make my ear canal more normal in shape again as well as a graft.

?Hope this helps and isn't alarmist. With me he said we could either carry on as we are ie with the microsuctioning, in which case I may have needed an operation at some point later day the line anyway or go for the op now.  Best wishes

Thanks Mieshkha, At Docs tomorrow. Will see what's advised.

 

Good luck Marie for tomorrow and a good tip, write all your questions down before the appt. I came away from a lot of appointments wishing I had done this, as I found that when I got to the appointment, my mind went blank and I forgot to ask the questions I had intended to and then kicked myself afterwards! Best wishes

http://www.explainmedicine.com/article/Otorhinolaryngology/Cholesteatoma-Of-External-E

Emis Moderator comment:

There is also a Patient leaflet on this site:

https://patient.info/health/cholesteatoma-leaflet

Good luck Marie.  Kylie's follow up was 1 week out from surgery, completed today. Next visit back is in 2 weeks, no more packing in ear after it was removed today, very easy process. I did ask about MRI prior to surgery and was told it was not needed for Ear Canal Cholesteastoma, that CT was best view.  She had one anyway for headaches and it came back normal, the mass wasn't even commented on. Agree good idea to bring list, helped me just today. Problem is cont. severe dizzy/balance issues.  No real answers except ?migraines, I suspect vertigo.  No school yet obviously as she's not sitting up or standing wthout dizzy, balance issues.  Hope more time helps but its slow going.

Hi so sorry to hear your daughters c'toma was so extensive. I presume she still has dressings in? This will affect her balance if so. I believe it will improve once they are removed as they essentially make you deaf, they go a long way in. She may also find it difficult to tell which direction sounds are coming from and how loud she is speaking. All this goes away with time and healing and hopefully once the dressings are removed she will be A OK 👌. Please send her my best wishes for a good outcome

Hi sorry but for some reason the rest of this conversation didn't appear on my screen so didn't see that your daughters dressings were already out. I had mine in for 4 weeks! I did have an MRI also a biopsy to check for cancer cells prior to final diagnosis

Oh and my surgeon said I should be good for 10 years but no one really knows if it will definitely come back

Did you have to have two operations in the end, i.e. a second operaton by maxillo facial surgeon to repair your jaw joint?