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Author Topic: Pretty sure I'm about to die  (Read 2470 times)
Posts: 1

« on: November 24, 2013, 11:08:26 PM »

35 yo female with life-long history. It was either congenital or acquired after tubes were inserted and then fell in at age 3.

At age 12 the first big piece of rotten bone fell out of my ear. Ear drum was never affected. A series of doctors missed the hole in the ear canal and infection festered and spread for years.

At around age 22 an ent discovered the hole and did a partial canal wall up mastoidectomy. I felt better for several years with 2-3 flare ups a year that seemed to  resolve with antibiotics. Then the flare ups got more intense and more frequent.

Over several years multiple scans, both ct and mri, said everything was fine. But I knew it was still there. That brings me to this year. In April a new ent ordered a ct scan. It said everything was pristine. He did not believe there was any infection but he agreed to do a skin graft to close a tiny hole in the ear canal.

When he got in there he found the entire remaining mastoid bone was destroyed and infected. The cavity was full of granulation tissue. He removed the rest of the bone. I woke up so relieved that finally they had found it, but that was short lived because my symptoms are worse now than before and as usual scans show nothing. I know that the cholesteatoma has spread into my skull bones but I cannot get any doctor to go in with a negative ct and mri.

I am definitely running out of time. I have a bed set up in the living room. Cant work. High intracranial pressure and bp. I am starting to have some neurological symptoms.

Can anyone advise?
Posts: 15

« Reply #1 on: November 27, 2013, 03:51:52 PM »

I'm afraid that I might have a c-toma as well. A ct showed nothing. Did they remove a c-toma in April? Is that what happened in the surgery? Some doctors just like to do another surgery six months later to see if it has come back. Have you went to a cholesteatoma specialist? I think an otologist is better than an ent. How many doctors have you been to? The ent that I went to today is going to order an mri but I found out about it and I am not going to be able to put this helmet on my head and lay in this tube for an hour without moving. I can't do it. What is suppose to be more reliable? The ct or mri? I can't get any answers to my questions about this? A technician told me that an mri would probably be better for a ctoma or soft tissue mass. The ent that I was going to said I have eustachian tube dysfunction but I think there is something inside my ear. It feels that way. I've had two myringotomies since September. One to drain fluid the other for pressure as my eardrum was slightly retracted. I had  the second one almost two weeks ago. Since then I have been left with a constant ringing in that ear. I'm hoping it goes away as my eardrum heals in several weeks. I didn't have any ringing in my ear until immediately after the procedure. I wish I had never had it done the second time. I have neurological symptoms as well. I feel alittle dizzy at times and have pain in my ear which is why I think I how something inside there. How bad is it to take an mri? Does it make you feel trapped inside? Did you have to put a helmet on your head and did they give you an injection when you took it. If they gave you an injection what was it like? I don't want to go thru all that if there is a chance it isn't going to show something. I'm sick all the time plus I can't hear out of the one ear. I don't know what to do next?
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