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,

That's so hard for me to believe...no pain due to your CMT. And yet, that's

what most doctors like to tell me... " well, at least CMT doesn't cause any pain " .

It really is incredible how differently we are each

affected, isn't it? My mobility is actually quite good but my fatigue level,

base-line pain, and general nerve dysfunction is quite troublesome.

No wonder doctors are confused, huh?

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-My daughter and I have no pain either with our CMT. Yet my late son

had terrible pain with his. yes, it is amazing how each of us is affected even

within the same family.

Barb

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  • 2 years later...

Hi,

I have had Cholesteatomas in both ears, and other than the bouts of

hearing loss and infections, the ear was otherwise normal. The

Cholesteatomas themselves didn't lead to any pain in my case.

Your case sounds similar to the situation with my right ear. I just

thought it was a bad infection when I had blood leaking out. In my

case, the Cholesteatoma was behind this. Definitely time to get

checked out.

Good luck!

>

> Hello,

>

> I am new to this group. I have read several posts and my condition

> sounds similar to most. Chronic ear infections since childhood,

tubes

> in ears, and ear leakage. Regretably, I have grown accustomed to

the

> symptoms and learned to live with it. Recently (about a year ago),

I

> got a severe cold and my left ear clogged and did not drain for

some

> time. A couple of days later, blood began to leak from my ear. I

went

> to my PCP and he referred me to an ENT. ENT did not like the looks

of

> my ear and ordered a CT scan and he mentioned the possiblity of C-

toma.

> I am scheduled to see the ENT on Monday to discuss the results of

my CT

> scan. What is odd to me is that although I exeperience slight

hearing

> loss, I don't feel pain in my ear. Is this typical?

>

> Thanks in advance for your comments.

>

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Hello,

My son had a congenital cholesteatoma, which meant it grew from before

birth. He had no pain or infections at all and was 5 when we found out

he had it. The Doctor could see something behind the ear drum for

almost a year, but thought it to be infection, but he never had any

pain. On the CT scan the area surrounding the middle ear in a normal

ear will be whitish, showing air in the mastoid and ear. If the area

around the ear is black it may be filled with c-toma. Also ask the the

report from the radiologist - it is full of helpful information.

Good luck! Judy

la10066 wrote:

>

> Hello,

>

> I am new to this group. I have read several posts and my condition

> sounds similar to most. Chronic ear infections since childhood, tubes

> in ears, and ear leakage. Regretably, I have grown accustomed to the

> symptoms and learned to live with it. Recently (about a year ago), I

> got a severe cold and my left ear clogged and did not drain for some

> time. A couple of days later, blood began to leak from my ear. I went

> to my PCP and he referred me to an ENT. ENT did not like the looks of

> my ear and ordered a CT scan and he mentioned the possiblity of C-toma.

> I am scheduled to see the ENT on Monday to discuss the results of my CT

> scan. What is odd to me is that although I exeperience slight hearing

> loss, I don't feel pain in my ear. Is this typical?

>

> Thanks in advance for your comments.

>

>

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Hello and welcom to the group. I had a very similar situation to yours. I had chronic ear infections for a number of years. There were times i would have one and not even know it because there was no pain. I dont know if thats normal or not but it did happen to me too.

On 1/31/08, avila10066 <avila10066@...> wrote:

Hello,I am new to this group. I have read several posts and my condition sounds similar to most. Chronic ear infections since childhood, tubes in ears, and ear leakage. Regretably, I have grown accustomed to the

symptoms and learned to live with it. Recently (about a year ago), I got a severe cold and my left ear clogged and did not drain for some time. A couple of days later, blood began to leak from my ear. I went to my PCP and he referred me to an ENT. ENT did not like the looks of

my ear and ordered a CT scan and he mentioned the possiblity of C-toma. I am scheduled to see the ENT on Monday to discuss the results of my CT scan. What is odd to me is that although I exeperience slight hearing

loss, I don't feel pain in my ear. Is this typical?Thanks in advance for your comments.

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