Re: Just found out I have a c-toma

[Guest guest]

Hi! I too have a cholsteatoma, Ive had surgery already its been 4 yrs and according to the doc it hasnt returned. I do have some mild hearing loss because the c-toma ate away at my little bones, I had a plastic bone put in place and I think it helped cause my hearing loss is mild but it was worst before. welcome to the group,im sorry about your c-toma,feel free to email me with any questions

best of luck,

Pamela

Pampers420@...

Just found out I have a c-toma

Hi all,I was diagnosed with a c-toma a month or so ago. From what I've readhere, my story is fairly typical. I'm 42 years old and have hadrecurring ear infections every year, all my life. My c-toma isadvanced and may have been in place for years. My ENT tells me thebones of my ear have melted away from the recurring infections. Idon't have any noticeable hearing loss though, so I'm hoping that willremain the case.He also said that my c-toma may be conducting sound to my inner ear inplace of the normal dinky bones that are supposed to be in there. Heis going to get more resolution from the CT scan first so we'll know.I'll be going into surgery sometime in the coming weeks. For those ofyou who are in the same position, I wish you all the best of luck.

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[Guest guest]

Mark,

I wanted to wish you luck with your upcoming surgery. I am 41 and was

diagnosed last year with the c-toma but before I could go for surgery, I

found out I was pregnant. We waited until I had the baby and then had

the surgery. The c-toma had eroded all the bones in my ear and had

moved into the inner ear. My ENT removed c-toma and grafted a new

eardrum but was unable to do reconstruction. I am exactly 1 month post

op and doing very well. If I can answer any questions or lend moral

support, feel free to contact me. Good luck!

Paige

>

> Hi all,

>

> I was diagnosed with a c-toma a month or so ago. From what I've read

> here, my story is fairly typical. I'm 42 years old and have had

> recurring ear infections every year, all my life. My c-toma is

> advanced and may have been in place for years. My ENT tells me the

> bones of my ear have melted away from the recurring infections. I

> don't have any noticeable hearing loss though, so I'm hoping that will

> remain the case.

>

> He also said that my c-toma may be conducting sound to my inner ear in

> place of the normal dinky bones that are supposed to be in there. He

> is going to get more resolution from the CT scan first so we'll know.

>

> I'll be going into surgery sometime in the coming weeks. For those of

> you who are in the same position, I wish you all the best of luck.

>

[Guest guest]

Hi Mark. I wish you the best during your c-toma adventure! My 21 yer

old son has had c-toma's removed from both ears, he was told that he

will probably be facing at least 2 more surgeries to replace bones that

were taken out during the surgeries. He has been a real trooper through

all of this and he told me that he had no regrets about the surgeries.

The Dr. suspects that he has had c-toma since he was a small child,

from the age of 3 weeks on he had constant ear infections, we had his

tonsils and adnoids removed and at least 20 sets of tubes, it amazes me

that no doc ever diagnosed it until he joined the army at 19 , when he

got to basic training at Fort Benning they dicovered the c-tomas right

away and gave him a medical discharge.

Tony (my son) is doing well, as I am sure you wil to! Try to keep a

positive attitude it helps with healing and any adjustments to your

hearing after surgery. Even though c-toma is serious we joke a lot

about it and I have always felt that laughing helps more than crying or

being depressed1

Hang in there, my familie's thoughts will be with you,

Barbara Mother Of Tony in Seattle

[Guest guest]

I want to say Thank You to everyone who has offered advice and

support! I'm a bit nervous but my attitude is, accept what live gives

and hope for the best. It's great to see all the positive and

supportive responses here. I'll keep everyone informed and stay up to

speed on what everyone else's experiences are.

-Mark

>

> Hi all,

>

> I was diagnosed with a c-toma a month or so ago. From what I've read

> here, my story is fairly typical. I'm 42 years old and have had

> recurring ear infections every year, all my life. My c-toma is

> advanced and may have been in place for years. My ENT tells me the

> bones of my ear have melted away from the recurring infections. I

> don't have any noticeable hearing loss though, so I'm hoping that will

> remain the case.

>

> He also said that my c-toma may be conducting sound to my inner ear in

> place of the normal dinky bones that are supposed to be in there. He

> is going to get more resolution from the CT scan first so we'll know.

>

> I'll be going into surgery sometime in the coming weeks. For those of

> you who are in the same position, I wish you all the best of luck.

>