Just Diagnosed

Posted , 11 users are following.

Hi, I have just been diagnosed with a Cholesteatoma.

I have complained about a full feeling in my ear for "years" but never really checked into it.  I have complained off and on of the feeling of water in my ear and the Doctor just would give me antibiotics to clear it up and this process has been going on for years as well but the fullness never left.

Last year I had to fly to pick up my Sons car and bring it back home.  It was the most miserable flight I have ever had.  My ears hurt so bad and when I got back home I "again" went to the Doctor and got antibiotics for another ear infection.  Shortly after that I started hearing crickets in my left ear that would never leave.  I tolerated it and never got it checked because it just wasn't bothering me all that much but then the "thunder storms" moved in and I started getting lightening strikes of pain in my ear and they got bad enough that I was using a rice pack on my ear almost all day to make it feel better.  I went to an ENT and after a lot of testing, he was going to put a tube in my ear.  He was in the process of preparing to put the tube in and pulled back a piece of crust over my ear and all of the debris fell out.  That is when he diagnosed me with a Cholesteatoma.

I have to go to another specialist next week.  My ENT said that this is not something that just happened in the last 6 months, he said it has been there for a while.

Now after reading several posts I am really worried.

I have never experienced any discharge with odor.

I am wondering if anyone else experienced the pain and the ringing "before" being diagnosed?  I am thinking that maybe mine has progressed to something not so good.

What should I expect when I go see the ENT/Surgeon?

I have been experiencing many nasty headaches, but I have allergies and sinus issues and just figured it is from that.  Now I am thinking that maybe I should really be concerned. 

I hope that they "will" do a CT scan because I am pretty concerned now.

Can anyone offer me any advise or give me any kind of "positive" news?


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  • Posted

    Good Morning Terry,

    I was diagonsed with this monster as I like to call it 2 years ago.  I am 42 now but have experienced the fullness in the ears for over 20 years before I was diagnosed in 2013.  Fast forward and I have had 2 operations in my left ear and

    in June of this year my right ear was operated on.  I wont lie, its a nasty horrible disease but I am alive and well and still live my life as normal.  Dont suffer headaches thankfully but I did suffer with horrendous dizziness and vertigo, along with constant noises in my ear which at times sounded like an F16 fighter taking off lol.  Since my operations though the dizzy spells have all but gone, vertigo too and the noises are now more quiet.  My CT scan was basically a waste of time as the choloesteotma was much bigger when my surgeon went to operate.  I do suffer allergies too and tend to sneeze alot, this is controlled with a nasal spray.  Hearing wise I have been left with a 25% reduction in my hearing in my left ear and I have still to have the hearing test for my newly operated ear.  I dont wear hearing aids though but I do manage.  Sorry for rambling on, if you need to know anything at all please feel free to ask, its nots the nicest of things to have but with a good surgeon and a good sense of humour you will be absolutely fine.  Best Wishes, Donna


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    • Posted

      Hi Donna,

      Thank You so much for your response.

      Everything I have been reading about this disease certainly does qualify it to be called a "monster".

      Yes, the fullness has always been an issue but not bothersome.

      The ringing crickets aren't even the worst part.  The dizziness off and on and the pain that I call "thunder storms" is what I am having the worst issue with.  I do get bad headaches but I am not certain that they are related to the Cholesteatoma.  I am going Tuesday, September 1st to see the ENT Sugeon for the first time.  After everything I have been reading I am hoping that he actually does order a CT scan because now I feel a bit worried.  When my ENT went in to do the tube and found it I must say it felt so good when he was suctioning out all of that stuff.  My ear felt wonderful and I just wanted him to leave the suction tube in there.  (I guess that might sound strange to someone with a normal ear but I am guessing that you know what I am talking about)

      I just went to him this Tuesday and they got me the appointment with the Surgeon already next week.  I am hoping and Praying that there is not too much damage already but it seems my symptoms are more of the progressive type.

      Can you tell me how soon I can expect to return to work afterward and what can I expect to feel after the surgery?  I am hoping the pain is not as bad as what I have been feeling in the ear already.

      The rice pack that I heat in the microwave has been my "best friend".

      At times I just want to tie a string around it to hold it to my head and keep it there.  My job is not physical, I am an Admin Assistant for an IT company so I mainly do a lot of paperwork, computer work and answering the phone, etc...  I don't want to be off too long because I do accounts payable and receivable for our company and I don't want to get behind on our billing.  Do you have any tips or suggestions that will make the recovery any easier?  I SO APPRECIATE your response.

      You have already made me feel better by having someone to talk to.

      Thanks ; o )

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  • Posted

    Hiya Terry,

    Ah someone else who loves the ear hoover ! Its my pal too.

    Firstly I would tell you NOT to read about this on the internet, I did so before my first operation and it resulted in me having to be heavily sedated before my op as I was hysterical the morning of the op.  Everyone is different in their experiences afterwards but if it helps I will give you quick run through of mine.

    Once you speak to your surgeon you will know if he is able to operate through the ear canal or like mine behind (on both occasions).  My first op was 3.5 hours long, woke up with big bandage round head (it can be quite uncomfortable) no dizziness just groggy.  Was allowed home the same day as thankfully I am not sick after anasthetic, off work for 2 weeks (I too have an admin job).  Best ever advise I can give you is sleep upright for the first few nights or at the very least keep head elevated, DO NOT under any circumstance bend down, or over exert yourself, your body really needs to rest, if you can do that the healing is alot quicker.  After 3 weeks you get your packing removed from inside your ear, this is a quick painless procedure, I have to follow up with my surgeon every 3 months as my ears are now non self clearing, so its hoover for me.

    Hospital gave me painkillers of paracetamol, ibuprofen and I took these for around 3 days.

    Second op my surgeon tried to get in through my ear canal, realised the toma was too big and had to cut in behind again.  Unfortunately my op was just over 5 hours long and boy did I feel it when I came too.  Pain was alot more on the right side but again, same pain killers given which I had to take for slightly longer think if was 5 days.  I took 4 weeks off this time only because I then developed an allergic reaction to the BIPP packing that goes inside your ear, apparently this is quite rare and I have very sensitive skin so dont panic on that score.

    The hospital will tell you to sneeze with your mouth open, try not to sniff too much and as long as you rest up for a good few days you will be fine.  Let me know how you go, if you need anymore info please do not hesitate to ask.

    Best Wishes

    Donna smile


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    • Posted

      I know this thread it super old but I too have ctoma in my left ear and go for surgery in 2 weeks.. I am beyond scared for this surgery since they say I will be out for 5 hours and well it's my ear its gunna hurt bad.. I can take pain pretty well but when it comes to my ears nope!. Also I am super nervous that I'm going to walk out of there deaf! Cause I did read about this on the internet 😭😭😭

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    • Posted

      Hi Patti,

      I wish I could tell you not to worry and that would work but it is always scary to face the unknown.

      I just knew I had no choice but to get it taken care of and the pain I had prior to the surgery was "much worse" than after the surgery.

      The ctoma had grown upward and was eating was starting to eat into the skull bone. Those headaches were "terrible" and non stop. I had to wrap a heated rice pack around my head to help the pain.

      I woke up after surgery with a bandage around my head but no pain just awkward.

      Its definitely awkward for awhile but that goes away. The weird part was I had accidentally bumped my ear afterward one time and could tell it was not securely attached at first LOL it was a very weird feeling but as it healed it returned to normal. There are still some numb areas around it but I can live with that.

      All I can tell you is the worrying and the fear of waiting is worse than the surgery.

      You will be FINE.

      I am not deaf but I still have the ringing that I have been told I will just need to get used to and I have. They are just crickets that are with me every day, if they get too annoying I use an app called mynoise.net and choose a sound that helps balance it out then I don't notice it as much.

      I wish you the very best and will keep you in my thoughts n Prayers.

      Hang in there and try to think positively.

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    • Posted

      Thank you so much for being so caring! Lol I know I wish I could just turn off feeling scared lol I know in my gut everything is going to be ok and my brain is just whirling with what Ifs lol.

      Also from the ct scan it does not sound like its anywhere near my brain or skull supposibly.. Just to let u know ur testimony is very positive. Thank you

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    • Posted

      So I have had my.op and like u said it was fine hahaha nothing to even really worry about.. now it has been 4 days and basically no pain but superrrrr itchy I just wanna itch it1 so bad! Lol the stitches have almost all desolved already.. and my appointment is on tuesday.. I'm assuming I get that stuff out of my ear.. how did u wash u hair I'm at a lost they said it is VERY important to not get my ear wet especially with the packing in there..

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  • Posted

    Hi Terry

    I have just found this discussion and wonder how you are getting on. Really hope they are sorting it out for you.

    I've just seen my GP who thinks I also have this condition so am trying to learn as much as possible. (GP did say 'don't look it up and worry yourself' but I'm the sort that has to know!).

    I'm a bit concerned that she said it may take 3-4 months to get the initial ENT appointment, although she said it might be quicker when she mentions her suspicions. Did you have to wait this long?

    All best wishes.


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  • Posted

    Hi Donna and Carole,

    Thank You both for checking with me.

    I did see my ENT Surgeon on Tuesday.  He said he agreed 100 percent with my ENT Doctor Neuman.  He had No Problem seeing the Cholesteatoma...He said it was large, black, hanging down in there.  He had 2 students in the office with him and had them look at it as well.  

    He was really awesome...he told me the Good news is that it was not cancer and he could fix it.  So I was Very pleased with his confidence.

    He took time with me and asked what symptoms I was having and I explained everything.  He told me he was concerned about the dizziness off and on and he does not normally order a CT scan but wanted to get one done just to see how to prepare for the surgery.  He said that if the disease has spread to the "vestibular bone" there would be some extra preperation he would need to make for the surgery.

    He said he did not want to schedule the surgery until he sees the CT scan.

    So I had the scan done the same day downstairs in their facility and I have another appointment to go back on the 15th.  I will know then when I have surgery and how he will proceed with it.

    He told me he will probably do it on a Friday and get me right out of there.

    So I really liked his confidence.  

    I am sure I will learn more when I follow up on the 15th.

    A guy I worked with...his daughter had the surgery and she also had the same Surgeon...(Dr. Cliff Megerian)...He is top of his field at Cleveland University Hospitals.  He told me his daughter went in on Friday and she only missed Friday and Monday from work.  He said Dr. Megerian didn't give her any time off of work.

    He said she had some pain for a few days after the surgery but was feeling better by Tuesday.

    I think that each situation is unique and there may be more damage in one situation than another.  There are also complications that could arise but I hear that those complications are pretty rare anymore.  

    Our Pastor's Father had it done YEARS n YEARS ago and he said his Father did have Facial Paralysis.  (Not a great thing to hear) but I try n keep in mind that WAS Years ago.

    I believe Donna said it right...the more you read and hear the more it can play on your fears and emotions.

    I only know that "I have No Choice...I have to have it done and It is What It is"!

    I look forward to not having to deal with the Pain I have now (which is getting pretty old).  I accept that I will probably be in some pain afterwards for a few days (that's understandable considering what needs to be done) but long term I hope it is for the better.  : o )

    Thanks for All of your Wonderful Support and for talking with me.

    I will "definitely" keep you posted on the date of the surgery when I know and how it all went.

    : o ) 

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  • Posted

    Hi Terry,

    Thanks for your message.  Really pleased everything is going quickly for you, quicker to op = less time worrying.

    There always seems to be a misconception that this is cancer, its not in any form, they refer to it as a tumour as it mimics the way in which cancer eats away at everything.

    Before you know it you will be in and back out and it will all be over bar the regular check ups.  I for one am relieved to have had both surgeries, fingers cross it stays away for a wee while at least.

    Best Wishes, will hear how you go after the 15th.

    Donna smile

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    • Posted

      Thanks Donna...You are Sweet ; o )

      And Yes...I agree, it is a relief to hear it is Not cancer as they all say how it spreads and does damage like it is.

      Just keeping my fingers crossed and saying LOTS of Prayers that the damage is minimal. 

      I will keep you updated my Friend ; o )

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  • Posted

    Hi Donna and Carole,

    Well I went to see the Surgeon yesterday.

    He showed me the CT scan with Cholesteatoma on the computer.

    He zoomed in and explained everything to me.

    Apparantly mine had done a lot of damage and has actually started to grow upward and into the skull.

    I am scheduled for Friday, November 13th.

    He wanted me scheduled the first available Friday and the first case on that day.

    That was the soonest that they could schedule me.

    I was reassured that I am in VERY capable hands and I was told that Dr. Megarian is the Doc that actually invented this surgery.  They told me before he came up with the surger they wen thru the skull to do this...so I am feeling much better with that being said.  I feel VERY confident in his skills and know I am in good hands.

    He is working in 2 different hospitals and has 2 different secretaries who interact to create his schedule.  

    He asked me how I was feeling and I told him that the past 2 weeks have been okay.  I haven't had any major pain and ever since Dr. Neuman removed the piece of skin in the front of the ear I have had like cookie crumbs that fall out of my ear (especially at night while I am sleeping)  when I wake up I feel them in there and clean them out.

    Dr. Megerian told me that he may have to go back in after a couple of months to make sure he got everything but he said every once in a while he can "knock it out of the park" and that is what he is going to try to do with me.  (LOVE his positive attitude)  I couldn't be more Blessed or Pleased to have him as my Doc.

    He asked how long I think I have had this and I told him that I have had that fullness in my ear for at least 20 years...He said that explains a LOT.

    It never was too bothersome so I just dealt with it.  When the pain and dizziness started is when I knew something was not right.

    He told me he will make a small incision in the back of my ear and it shouldn't take more than an hour and I should be able to go home that afternoon.

    Let's hope and Pray it all goes "that well".  I guess this is his specialty so I am taking him at his word and letting God guide his hands and do the rest ; o )

    Thanks for all the Prayers...Keep them coming in the next couple months.

    I will keep you posted.

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    • Posted

      Hi Terry

      Thanks for keeping us updated and it sounds like you are in very capable hands. Your surgeon sounds very confident and should get it all sorted out for you.

      Are you in Ohio (you mention Cleveland University Hospital)?

      I will be thinking of you and hoping all goes very well for you.Keep up the positive attitude & look after yourself.

      I'm in Suffolk, UK and have my first appointment  at ENT on Tuesday. I've managed to put it mostly out of my mind for the last couple of weeks as it is not giving me any problems.

      Huge thanks to you & Donna for sharing your experiences and wishing you both well.



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