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Cholesteatoma question

2 replies

Mumto2two · 06/09/2018 23:23

Our daughter is 9 and has complex health issues relating to immune deficiency.
She routinely suffers recurrent infections in multiple sites, including her ears, and has had many severe ear infections and perforations. She had surgery for a severe retraction pocket last year in one ear, and then developed a larger deeper pocket in the other. This is fixed and non reversible, and we were told it was highly likely this would develop cholesteatoma, but only time would tell. She did have recurrent pseudonomas discharge for a few months, but this finally cleared after a long course of IV antibiotics and long term ear drops. A few weeks ago she woke up with severe vertigo, started vomiting and was unable to move. This has happened a few times since. The consultant we saw said that he could not see evidence of cholesteatoma yet, but she would certainly develop it at some point. Has anyone had cholesteatoma experience that initially presented with attacks of vertigo like this? She is having an MRI scan to check her inner ear, but is it possible for something to form there without being visible with otoscopy? Also, does anyone know how likely is cholesteatoma formation, with severe grade pockets and ongoing inflammation / infection issues? Any info or personal experience would be much appreciated. Thank you.

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Are your children’s vaccines up to date?
Rhayader · 10/09/2018 19:26

This is totally different but my dad had a cholesteatoma which started with vertigo and discharge from his ear. He had previous surgery on his ear but he was also in his 70s when this happened!

Mumto2two · 11/09/2018 13:34

Thank you, do you recall if this was obvious to the ENT doc, or was it only spotted after MRI? Have read mixed things about how difficult they are to spot. And the vertigo of course is very ominous.. did your Dad have it all the time, or was it episodic?

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