SMILES

My daughter has EEC syndrome. Along with a bilateral cleft lip
& palate and the associated difficulties those incur, she has
a multitude of related hearing problems. The biggest concern is
with cholesteatoma growing in her ears. Has anyone had similar
problems? What can be done about it? Any info or links would be
greatly appreciated!

Most children with cleft palate who develop hearing loss do so
as a result of fluid which accumulates in the middle ear. The
fluid results from the negative pressure which occurs due to poor
function of the eustachian tube (which connects the ear to the
throat). This in turn causes fluid to leak from the cells lining
the ear. In some patients with severe negative pressure, and
occasionally in some who have had tubes placed, pockets or holes
may develop in the eardrum. On rare occasions, skin from the
outer surface of the eardrum may accumulate or grow from the
eardrum into the middle ear space. This is known as a
cholesteatoma, and may be a locally destructive process resulting
in hearing loss. This problem requires surgical removal of the
cholesteatoma and, in some cases, reconstruction of the hearing
bones. If you suspect this problem in your child, it is
imperative that you visit with an ear specialist.

Most children with cleft palate who develop hearing loss do so
as a result of fluid which accumulates in the middle ear. The
fluid results from the negative pressure which occurs due to poor
function of the eustachian tube (which connects the ear to the
throat). This in turn causes fluid to leak from the cells lining
the ear. In some patients with severe negative pressure, and
occasionally in some who have had tubes placed, pockets or holes
may develop in the eardrum. On rare occasions, skin from the
outer surface of the eardrum may accumulate or grow from the
eardrum into the middle ear space. This is known as a
cholesteatoma, and may be a locally destructive process resulting
in hearing loss. This problem requires surgical removal of the
cholesteatoma and, in some cases, reconstruction of the hearing
bones. If you suspect this problem in your child, it is
imperative that you visit with an ear specialist.



<b>From: </b>David H. Darrow, MD, DDS

<b>Category: </b>Craniofacial General

<b>Date: </b>18 Nov 1997

<b>Time: </b>10:00:17

<b>Remote Name: </b>157.21.36.69




<h3>Comments</h3>


Most children with cleft palate who develop hearing loss do so
as a result of fluid which accumulates in the middle ear. The
fluid results from the negative pressure which occurs due to poor
function of the eustachian tube (which connects the ear to the
throat). This in turn causes fluid to leak from the cells lining
the ear. In some patients with severe negative pressure, and
occasionally in some who have had tubes placed, pockets or holes
may develop in the eardrum. On rare occasions, skin from the
outer surface of the eardrum may accumulate or grow from the
eardrum into the middle ear space. This is known as a
cholesteatoma, and may be a locally destructive process resulting
in hearing loss. This problem requires surgical removal of the
cholesteatoma and, in some cases, reconstruction of the hearing
bones. If you suspect this problem in your child, it is
imperative that you visit with an ear specialist.

Most children with cleft palate who develop hearing loss do so
as a result of fluid which accumulates in the middle ear. The
fluid results from the negative pressure which occurs due to poor
function of the eustachian tube (which connects the ear to the
throat). This in turn causes fluid to leak from the cells lining
the ear. In some patients with severe negative pressure, and
occasionally in some who have had tubes placed, pockets or holes
may develop in the eardrum. On rare occasions, skin from the
outer surface of the eardrum may accumulate or grow from the
eardrum into the middle ear space. This is known as a
cholesteatoma, and may be a locally destructive process resulting
in hearing loss. This problem requires surgical removal of the
cholesteatoma and, in some cases, reconstruction of the hearing
bones. If you suspect this problem in your child, it is
imperative that you visit with an ear specialist.



<b>From: </b>David H. Darrow, MD, DDS

<b>Category: </b>Craniofacial General

<b>Date: </b>18 Nov 1997

<b>Time: </b>10:00:17

<b>Remote Name: </b>157.21.36.69




<h3>Comments</h3>


Most children with cleft palate who develop hearing loss do so
as a result of fluid which accumulates in the middle ear. The
fluid results from the negative pressure which occurs due to poor
function of the eustachian tube (which connects the ear to the
throat). This in turn causes fluid to leak from the cells lining
the ear. In some patients with severe negative pressure, and
occasionally in some who have had tubes placed, pockets or holes
may develop in the eardrum. On rare occasions, skin from the
outer surface of the eardrum may accumulate or grow from the
eardrum into the middle ear space. This is known as a
cholesteatoma, and may be a locally destructive process resulting
in hearing loss. This problem requires surgical removal of the
cholesteatoma and, in some cases, reconstruction of the hearing
bones. If you suspect this problem in your child, it is
imperative that you visit with an ear specialist.

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!



<b>From: </b>

<b>Category: </b>Craniofacial General

<b>Date: </b>12 Sep 1998

<b>Time: </b>23:03:17

<b>Remote Name: </b>12.68.101.112




<h3>Comments</h3>


Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!



<b>From: </b>

<b>Category: </b>Craniofacial General

<b>Date: </b>12 Sep 1998

<b>Time: </b>23:03:17

<b>Remote Name: </b>12.68.101.112




<h3>Comments</h3>


Dr. Darrow, read your post re: cholesteatoma, do you ever find
that these growths continue past the ear drum area and into the
brain? Are some congenital? I know that epidermoid brain tumors
often found at the cerrebellopontine angle near the 7th and 8th
cranial nerves origin have also been called
"cholesteatomas" and am wondering about their
relationship to those found in the ear. If you have any info
please email me at samajane@braintrust.org thanks!

I have a 11 yr old who had a cholsteatoma,also 2 nephews , my
daughter had always complaned of haedakes, and had ear
infections,she has done great since she had it removed, now a
year latter she has a ear infection in the other ear it has a
tube in it I worry it has grown in the other ear.

I have a 11 yr old who had a cholsteatoma,also 2 nephews , my
daughter had always complaned of haedakes, and had ear
infections,she has done great since she had it removed, now a
year latter she has a ear infection in the other ear it has a
tube in it I worry it has grown in the other ear.

I would be intereste in finding out how this is diagnosed. We have heard that my sons mild hearing lose is "conductive, possibly due to genetic condition,normal for children with cleft lip and Palate" all from different people. Boy am I confused! He has tubes (set #4) in addition to holes left from previous tubes. I would appreciate any info. on this. e-mail:cuttler495@aol.com