Overlooked and Ignored

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Do you see that white spot? There were no warning signs or symptoms. .. just ear infections. That is a cholesteatoma.
It’s a cyst that grows and grows, destroying the bones inside my head.

How many ear infections are normal? 1 or two a YEAR! I had many more than that. Some doctors will only treat the infection… if you or your child have 3 or more in a year DEMAND a CAT scan. My first c-toma was undetected for so long when I went for surgery the doctor said I was probably only months away from dying of meningitis. It makes me sad to hear so many stories from parents who didn’t know what to ask or look for so I beg everyone… please read for more info

http://www.entnet.org/content/cholesteatoma

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3 thoughts on “Overlooked and Ignored

  1. Keep posting! So many more people need to hear about this disease.
    I suffered for years with chronic infections. Despite the obvious indicators (continuous drainage and putrid stench) I had been misdiagnosed time and time again. When I finally had a CT scan, after months of begging, the ball started rolling; same day the results were back I was ordered to travel to a specialist 12 hours away. I had surgery the day after the results came back. I have complete irreparable hearing loss in that ear; I try to remember it could have been worse; when I saw the doctor after recovery he indicated it was one of the worst he had seen stated it would have been mere weeks before it had become meningitis, possibly death.
    I will be completely honest, I do not deal well with my deafness and it is a bitter pill I have to swallow each and every day. I politely explain to people why I have to “turn my head”, why I need to see them speak, etc. And for some reason no one ever seems to hear me. The paradox of that is not lost on me.

    • Patti, I am so on that ride with you! It took a LONG time for me to deal with my deafness. But I did! And if I sit back and think about it now some times its a blessing. Not to many moms can turn off the kids when arguing over who started what. I look forward to writing more and ‘hearing’ from everyone!

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