Cholesteatoma

Cholesteatoma is a serious but treatable ear condition that can only be diagnosed by medical examination. Persisting earache, ear drainage, ear pressure, hearing loss, dizziness, or facial muscle weakness signals the need for evaluation by an otolaryngologist.

My son, Dusty, had this years ago. I admit hearing he had a tumor in between his brain and his ear was a bit jarring. I mean who wouldn’t react that way to hearing the word, tumor?

With Dusty already having other complicating conditions this just added to it. Him not being able to describe things like a ”normal” person was difficult. He doesn’t have a pain perception, he can’t tell you if something hurts or he feels dizzy. We just had to watch him even closer to see what he was doing or not doing.

He experienced vertigo as well.

Below is an example of a cholesteatoma

Surgery for cholesteatoma | healthdirect

Cholesteatomas usually continue to grow if not removed. Surgery is typically successful, but occasional ear cleaning by a healthcare provider may be necessary. Additional surgery may be needed if the cholesteatoma comes back.[1][3]

In rare cases, complications may arise. These include:[1][3]
A collection of pus and other material in the brain (brain abscess) Hearing loss in one ear. Dizziness (vertigo) A breakdown of the facial nerves leading to facial paralysis, Meningitis Persistent ear drainage. Spread of the cyst into the brain

He had the surgery to remove it but we still need to watch him just in case it starts to grow back. If it does then they would need to perform surgery again to remove it.

It is hard sometimes to recognize symptoms of an illness on someone that has other medical issues going on. You don’t know if these symptoms are related to something they already suffer from or is it a new symptom of something else.

Kind of like someone suffering from allergies, coughing, sneezing, etc and folks looking at you as if you have the dreaded coronavirus.

It was extremely worrisome knowing the tumor could lead to meningitis. Knowing he had already fought through meningitis once in his lifetime scared me. Could his body fight it again. I mean he got brain damage from salmonella, how could he fight meningitis again?

I know he doesn’t have it now but knowing the tumor could grow back and he couldn’t tell us if he feels any different. By the time we noticed anything before it had already grown to a considerable size. I don’t even remember the reason why we went to see the specialist.

His hearing and speech have always been off. His neurologist has ordered speech therapy numerous times but every time we would go through the evaluation process they would say he didn’t need it. We have noticed a difference in his speech and that is why his neurologist ordered the speech therapy, over and over again. I don’t know if he got denied because the insurance company wouldn’t pay for it in the current state. Who knows. But we work on things at home the best we can.

We are grateful for the treatment he received and continues to receive, but know there is always a chance for the thing to rear its ugly head again.

Have a great week!

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