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Just Diagnosed

Posted , 11 users are following.

terry3207
terry3207

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?

Thanks

1 like, 25 replies

25 Replies

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  • donna97903
    donna97903 terry3207

    Posted

    Hi Terry

    Good to hear from you.  November not a long time to wait at all, at least it

    will all be over and done with soon.  Will keep you in my prayers.

    Keep well and keep positive smile

    Best Wishes

    Donna

  • terry3207
    terry3207

    Posted

    Just an update that surgery has been re-set for the 20th (1 week later) due to the Doc being unable to have his way at the (In-Network) facility that my insurance will cover.

    Pretty "Stupid" that my insurance co. will only pay for the UH "Westlake" facility and not the UH Main Campus facility...I mean "What difference does it make right?"  Same Doctor...same procedure either way and still a UH Hospital??? Try n Figure that one out!!!  Makes absolutely NO SENSE to me.

    But...I am SO GRATEFUL to my Surgeon for adjusting his schedule to perform my surgery for me...LOVE him!!!  What a "Positive Attitude" he has as well.

    I am told he's the BEST in this field.  I am Blessed ; o )

    Yes Carole, I am in Ohio.

    Hope you are doing Well razz

    • cholestear
      cholestear terry3207

      Posted

      Hi Terry -  It's been 10 days since your scheduled surgery and I hope you can post something here soon to let us know how you're feeling and how it went.  Did it really take only 1 hour, as your doctor predicted?  What type of surgery did Dr. M do? Canal wall up, canal wall down, hybrid, atticotomy or something else in between? 

      My surgery is in 10 days and I'm terrified. It helps a lot to hear others stories to at least have an idea what to expect.  I've heard that mine has been there for quite some time as well - so I'm afraid of how extensive it will be. 

      Hope you are well enough to post soon and on the road to recovery.

      J...

  • Suffolk_Carole
    Suffolk_Carole terry3207

    Posted

    Hi Terry

    It's a pain having to wait another week but sounds like it will be worth it to get the surgeon you want.  Hope all goes well & will be thinking of you.

    I had my nurse appointment early October. she used her suction tool & got some wax out, then said she can see right to my eardrum & it is clear, no 'granules'.  Just wish I was convinved as it still feels clogged up. It crackles all the time - again Nurse said this was wax hitting the ear drum.  I'd like to go back to my GP but don't want to waste her time if I'm being a hypocondriac.

    Wishing you all the best.     Carole

    • horo
      horo Suffolk_Carole

      Posted

      Hi Carole,

      I'm in Suffolk too - Bury to be precise. I was diagnosed back in July this year after having an infection that started back in March.

      I've had ear problems that arose from having measles as a toddler. I had my adenoids removed at about 8 years old followed by three myringoplasty's to fix my perforated eardrum over the next 20 years, suffering for over 40 years now with recurrent ear infections.

      I'm still waiting for a date for my surgery, which I was led to believe would be within 18 week of diagnosis at the West Suffolk Hospital, but was told it may not now be until "sometime in 2016". I find this very worrying. I have no idea how fast a cholesteatoma grows and I already have a strange sensation when touching the right side of my face (it's in my right ear) and have awful pain both in and behind that ear. I know that my face drooped when I had the measles that caused the ear problem in the first place.

      Hope everyone's doing ok here - let us know how your surgery went Terry, when you're able confused

    • matt2382
      matt2382 horo

      Posted

      Hi Horo,

      I hope you’re well you’ve had the operation by now and have recovered successfully.

      I live in Brandon and am also going through consultation for a cholesteatoma at West Suffolk.

      I’m 35. It started as a light infection after I went swimming in July, I was practically dismissed by the doctors twice and told it would get better on its own, which it didn’t! The third time I went to the doctor (early September) I was referred to West suffolk and diagnosed with a suspected cholesteatoma. A week later I had a CT scan and now have my first appointment with the surgeon on 21st November, I assume to discuss the results.

      I had suffered with very bad headaches usually in the evenings and sometimes nausea specifically behind my eyes, and the odd ice pick stab at the top of my head, but didn’t think too much of it as nothing else seemed particularly wrong at the time - I  just assumed it was allergies or sinus flare ups. 

      As I write this I have a bit of a cold and a chest infection which appears to be making the symptoms of my cholesteatoma worse (light dizziness), which I guess any sinus infection would... 

      I’m just wondering what your experience was like at West Suffolk, was your consultant Dr Truman and your surgeon Dr Fahmy? He’s the guy  who will be carrying out my operation apparently. 

      Terry - if you see this I hope you’re also doing well and will excuse the thread hijacking, however I’m sure you’ll agree it’s good to know someone nearby has gone through the same thing with likely the same people.

      Thank you.

      Matt

  • stace619
    stace619 terry3207

    Posted

    Hi there, 

    I am 24 years old and have recently been diagnosed with "the monster". I have suffered with ear problems for as long as i can remember, I've had endless amounts of grommets inserted as a child and as an adult i have had 2 myringoplasty/tympanoplasty operations. 

    I was hoping for some insight about what to expect for the future from people who have experienced this beast first hand! I have damaged hearing in the affected ear, but i am terrified at the prospect of losing it entirely. How have you all been affected after surgery?

    I have had a substantial amount of bleeding from the affected ear for several weeks, to the point where it has become "normal". I went to see my GP yesterday, and he had never heard of the condition and googled it!!! He didn't know what to do, so sent me on my way. I am not due to see my consultant until the 17th of December, and within the last 24 hours, the affected ear and surrounding area has gone totally numb. Is the numbness something others have experienced? Its not a pleasant experience!

    Please share any advice you have - it would be greatly appreciated. 

    Thanks, 

    Stace

  • terry3207
    terry3207

    Posted

    Hi Everyone,

    Just an update...I had my surgery on December 1st. 

    Everything went "very well"!  My Surgeon and his Team are the BEST, I am VERY Blessed to have had him.  He said it was Very Close to my brain and he had to do a Lot of scraping in there.  It took 2 hours.  He was able to "restore" my hearing and said that he is pretty sure he got it ALL.  I go back this Saturday to have the packing removed and then back again in 6 months to make sure there was nothing left that started growing again.

    I must say that I have read so MANY "Not So Successful" stories on here and I was Very worried and concerned.  Sometimes Googling things helps and sometimes it does not but I feel it is always best to be aware of whatever possiblities that "may" come your way so that you can prepare appropriately.  

    I went thru a lot of different feelings while waiting to have this done and going over the "what-if" scenerios and I think that is probably very normal considering what we ALL know and have experienced with this unusual condition.

    I know I have said that I was BLESSED with a GREAT Surgeon...

    I CANNOT Say that ENOUGH!!!  

    I believe that when someone goes "out of there way" to "CARE enough" they should be recognized for it.

    My Surgeon "Dr. Meggarian" is not only an EXTROIDINARY Doctor but a WONDERFUL Human Being.  For a Doctor to "care enough" to adjust and arrange his CRAZY schedule to accomodate his patients is just "beyond dedication".

    First off the POSITIVE attitude that he showed me was "So Comforting".

    The Team of Anesthesiologist's and Nurses that took care of me throughout the operation and during recovery were EXCEPTIONAL as well.

    I feel as thou I am doing a commercial for them but they were ALL so Very Special that I HAD to mention it.  

    As far as the recovery, I had "Very Little" Pain, I was given a patch behind my ear for the nausea because my drive home was an hour and a half after the surgery.

    I had No nausea.  I was taking the pain pills but mainly to stay on top of any pain I may have experienced for the first few days.  I slept a LOT with those and it didn't take long for me to call and switch to Advil.  I think the only real discomfort was my jaw.

    It hurt for about a week until I started on the Advil.  I couldn't eat very good.

    A bit of a sore throat afterwards (from the thing they put in back of your throat to help you breathe)...when I first came out of it my stomach was burning but they put some zantac or something in my IV and it went away pretty quick.

    I had the surgery on Tuesday was off work the rest of the week and went back the following Wednesday for about 6 hours...that is when I started on the Advil because I wanted to speed my recovery up.  I think if I had done away with the pain pills sooner and started the Advil sooner I would have recovered a little quicker.

    Not sure how it will feel when the packing comes out but I am just planning to take an Advil before I go ; o )

    I Truly hope that this has provided some "Positive" feedback for some of you that are just going down this road and have just been diagnosed.

    I feel So Bad for those who have suffered "worse" with this condition.

    My thoughts and Prayers are with You, and I Pray that you will get thru it as quickly and as painlessly as I have.

    The WORST part is the "Waiting" and Not knowing exactly what it has damaged and destroyed in there.  

    I hope you all have as good a Surgeon and Team as I had...They really made it Easy for me ; o )

    Take Care ALL...MERRY CHRISTMAS & HAPPY NEW YEAR to You ALL!

    THANK YOU FOR YOUR SUPPORT!!!

  • laura.rr
    laura.rr terry3207

    Posted

    i have also recently been diagnosed

    im 12 and have just had my CT scan

    i dont know when my op is but it is around between now and mid feb.

    i have tinnitus and some headaches but that is about it, other than hearing loss - this is what i struggle with.

    in lessons i struggle to hear and guess a lot of what my friends are saying

    all i want to know is - does the op hurt ? what actually happens in the surgery when you get it with the NHS ?

    does it hurt after?

    thanks

    Laura

    • terry3207
      terry3207 laura.rr

      Posted

      Hi Laura,

      Just want to say "Don't Be Afraid"!

      I was in "very little" discomfort.  They give you stuff for pain when you are there and for when you leave.  To be honest, I did not know that I was able to take Advil and if I would have taken it instead of the Oxycodone that they perscribed, I would've probably been a lot better off.  I wasn't feeling a lot of pain, I just wanted to sleep "all the time" and I think that was from the Oxycodone so that is why I think I would have recovered much sooner with the Advil.

      It's been 27 days since my Surgery and I went back to work the week after my Surgery for a couple of days the first week then back to my full schedule the second week.

      When the ear starts to heal you feel more discomfort then when it is first done and I think that is because it is so numb with no feeling at first.

      I am still having a hard time keeping water from getting into it...that seems to be the hardest part for me because I wash my hair in the shower.  Would love some suggestions on that.

      I do use "headbands" at night to keep my ear from bending while tossing and turning and pulling the covers up.  It "really helps".

      Also I wear them around my dog because I love to play with her and there was one time that she had accidentally hit it with her paw and that didn't feel so good.

      What ever you do, "Don't Worry"...there are so many stories and every situation is unique.  My "Biggest" worry was that mine was so "VERY CLOSE" to my brain.  

      My Surgeon knew that and did everything he could to get me in as soon as he possibly could.

      He told me he does not think I will need another surger but he cannot say for sure.  

      I go back in April for a hearing test and I will see what he says at that point.

      I still have the crickets and ringing in my ear but I am going to wait until the 3 months are up before I panic...there is still a LOT of healing going on in there.

      If there are Any questions, Please don't hesitate to ask.

      I will try and respond as quickly as possible.

      DON'T WORRY ; o )

       

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