Just Diagnosed

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

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

Just a quick catch up to see how you got on at your Specialist ?

Hope you managed to have some of your questions answered.

Best Wishes

Donna

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.

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 ) 

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

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.