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Author Topic: White cloud behind eardrum?  (Read 8067 times)
Rachelsmom
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« on: March 22, 2011, 06:02:40 PM »

My daughter is 5 years old, strong healthy girl.  She rarely gets sick so 2 weeks ago, she had what turned out to be a viral infection, but since she was running a high fever I took her to see her pediatrician.  During the physical exam, the doctor said she saw some "white cells" in her ear and she wanted to see if it cleared out with the viral infection.  So I followed up today as the cold is all gone and the doctor said she saw "a white cloud behind the eardrum".  When I pressed her more about what it could be she mentioned maybe cholesteatoma.  But she didn't want to worry me, but referred me to a pediatric ENT.  She said, he would be able to tell me more because his ototscope is a microscopic type and can see better.  The appointment with the ENT is next Monday (my doctor requested it to be within 2 weeks).

I know I should not worry or consider the worst case scenario just yet, so I just thought I would ask how you or your child was first diagnosed.  I'm also curious because in reading the symptoms, the white in the ear is the only one, I think.  My daughter is pretty tough, so maybe she was having ear pain and is used to it?  I asked her if it hurt and she says "no, only after the doctor looks at it".  Also, there is no drainage with foul smell.
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Rachelsmom
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« Reply #1 on: April 05, 2011, 04:23:55 PM »

Thought I would post a mid way follow up in case anyone is reading this...

The ENT also confirmed something "white behind the eardrum" and ordered 2 tests: hearing test and ct scan.  Hearing test was done at his office and she passed everything.  I am very encouraged by that news.  The CT scan was done Friday (4/1) and I delivered the results to the ENT's office the following Monday (yesterday).  The doctor should be calling me soon but I know he has 6 different offices so I'm sure it will take some time for him to get to that office, review and call me.

During the exam, I asked the ENT what it could be.  He said it may be cholesteatoma but her's would be congenital since she has never had any ear infections or problems.  He said but it may also be an osteoma that will either go away on its own or small enough to not require any surgery.

I am anxiously awaiting the call from the ENT as l am very confused.  I have been called the "Google Queen" by loved ones, so I have been scouring the internet researching and this is what I've found the possible causes might be:

middle ear ostomas - are rare and usually occur in people that swim in cold weather - Does NOT apply to my daughter BUT it is viewed as "white"

congenital cholesteatoma - again rare, hearing loss is common (does not apply) and is viewed as "white"

Glomus tumor middle ear - Hearing loss common and is viewed as "red" - Both does not apply

Tympanosclerosis - Viewed as white and chalky but is ON the eardrum, not BEHIND it

Another concern is the actual CT scan films...I had them for a few days so I tried my best to interpret them, but of course, I did not have much success! Roll Eyes  The only thing I did not like was one film in particular - In my very-unprofessional opinion was a mass that started off small in the first frame then each frame following was enlarged bit by bit.  AHHH, I'm trying to remain positive but I want to be prepared for the worst. :'(
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aksmall
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« Reply #2 on: April 05, 2011, 09:01:53 PM »

Gosh, I don't think I've been on this site since September...Today I scheduled the second look surgery for my 4 year old daughter who was diagnosed with and had surgery for congential cholesteatoma in her right ear after a well-child check-up last year. 

I, too, have an affiliation for Google - I read horrible, horrible things online in the days after the first ENT used the term cholesteatoma.  Throughout this entire process (tests, waiting, diagnosis, surgery, follow-ups, and now as we prepare for another surgery), I am comforted by two things: First, I have every confidence in the doctors we selected at Johns Hopkins Hospital in Baltimore, MD - they are truly exceptional.  It's okay to "shop around" for your ENT.  Second, my daughter has always been strong, happy, playful, and (besides an undetected hearing loss) symptom-free.  The doctors have commented that she must have been used to the pain/pressure from the c-toma.  Heartbreaking for me, but she never complained.  The day of the CT scan and hearing test (last year), I was shocked to learn that my daughter had experienced a hearing loss in her right ear, especially as her speech and language were always advanced.

My daughter had her first surgery in July 2010.  The doctors believed that they removed all of the c-toma, but to do so, they also had to remove the bones of hearing.  This made my daughter's hearing loss more significant. We're going for the second look surgery in June - if the c-toma has not grown back, the doctors have discussed placing a piece of cartilage under the eardrum and using a titanium prothesis to restore some hearing.  It's a process and I'm still learning. I trust our doctors and I'm savoring time with my daughter.  Wishing you all best.   



   
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PAmom
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« Reply #3 on: April 06, 2011, 03:47:20 PM »

Ok... I am VERY similar to you with my obsession with searching online and scaring the heck out of myself!!!!   However I think Cholesteatoma would scare anybody.  I had never even heard of it before!!!

My 9yr old sons cholesteatoma was discovered during a routine wellness appointment with his pediatrician.  He said he saw a whitish/yellow pearl in his ear.   I couldn't believe it!  I was expecting to hear how healthy he is and how much he had grown... I was not expecting to hear a word that ended with "toma"!!!!  I immediately went home and researched Cholesteatoma... and I felt sick to my stomach!!  I was so worried and cried ALOT!!! 

I scheduled an appointment with a pediatric ENT from the Children's Hospital of Philadelphia (CHOP).  A hearing test was performed and he "passed".  His hearing was in the normal range.  However for the vibrations test (I think this tests the vibrations of ear drums and bones?) he "failed" for his right ear.  I was shocked!   My son then had a CT scan done which showed there was a cholesteatoma in his right ear.  I cried and cried some more!!!!  My husband kept saying, "okay it didn't grow into his brain, he's a healthy boy except for this cholesteatoma.  We just need to get his damn thing removed from his ear. Things could be so much worse than this"

My son had surgery at CHOP in September 2010.  The doctor performed a Tympanomastoidectomy.  The doctor said he may have to remove the ear bones because the cholesteatoma is wrapped around the bones.  The surgery lasted 5 hours and the doctor was able to scrape the cholesteatoma off the bones without having to remove them.  Of course the cholesteatoma could grow back.... so that is always on my mind.  However, for now I am thankful that my son is doing great.  His hearing is still within normal range.  I do wonder what his future hold as far as hearing loss, but I need to live in the present and not worry about possible cholesteatoma scenarios or I'm going to go crazy.  Also...he had surgery on a Wednesday and was able to return to school on Monday.  The surgical site was amazing.  There was barely a drop of blood.  It actually looked like someone just drew a line with a pencil on the back of his ear.  It looked nothing like the absolutely horrible pictures that I discovered online!!!  My son will have another surgery next year to see if the cholesteatoma has grown back.  Of course I'll be a nervous wreck for that surgery... but I trust his doctor and CHOP.  They were amazing. 

Best wishes to you and your daughter.
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gemma.1
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« Reply #4 on: April 13, 2011, 07:13:29 AM »

my daughter is 5 years old and has had cholesteatoma 4 nearly 2 years well so we think anyway.she had her first operation last year which took 5 and half hours they had 2 remove bones and rebulid her ear drum.she was due 4 a check up operation 6months later but doctors never sent 4 her so here we r now and she has just had another operation 2 see if it has cum bk and it has twice as bad the cholesteatoma has destroyed her new eardrum so we r now waitin 4 her 2 have another operation in june.she has a terrible smell cumin from her ear and im just wondering if any1 has any ideas of tryin 2 disguise the smell abit as she is at school and dont want children pickin on her.
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