Welcome to Miss Addy "Squeakers" blog. We would like to share our daughters journey of living with a Cholesteatoma Cyst.
What is a Cholesteatoma Cyst?
A cholesteatoma (ko-less’-tee-a-toe-ma) is rare, especially in children.
Typically, it is a growth in the middle ear, in just one ear but it is
possible for it to affect both ears. This growth can be present behind
the eardrum at birth or it can develop later, sometimes as a
complication of middle ear infections. A cholesteatoma is
not a tumor and is
not cancer.
A cholesteatoma is made up of layers of
skin tissue (epithelial) tissue. Just like an onion, it starts out small
and grows by adding layer on top of layer. Each layer is made of skin
tissue. The really
serious issue is that the cyst can eat away at whatever it touches. If a
cholesteatoma is not treated, it can invade the tiny bones behind the
eardrum (ossicles), dissolve part or all of the structures in the middle
ear, and as a result, cause hearing loss. If it grows large it can even
dissolve through the bone separating the middle ear space and the
brain. Serious potential complications of cholesteatoma include hearing
loss, brain abscess, dizziness, facial paralysis, meningitis, and
spreading of the cyst into the brain.
Last
spring (2015) Addison failed her hearing test at school so we received a note
from the nurse to take her to have further evaluation. We started with her
pediatrician who checked her hearing and concurred that Addison could not hear
out of her right ear. He then referred us to have another hearing test with a
specialist, again same results no hearing in her right ear. The next step was
for Addy to see an ENT whose appointments were normally a couple months out, but
she had a cancellation for the very next day so we took it. The ENT evaluated
Addy and said she needed a tube in her ear.
Surgery
was scheduled at Swedish American Hospital for April 23,2015. We were of course
nervous but not too bad because it was to be an easy procedure that Addy didn't even
have to have an IV, they just use gas and it was only to take a few minutes to
perform. The doctor came to talk to us shortly after and said that she did not place a tube
in Addison's ear. She said that once the started they found a large tumor/cyst
inside and did a biopsy. At that point I'm pretty sure Rich and I both stopped
hearing the doctor, you just start to panic ...what is it? why? what can be
done? biopsy... why is it cancer?? The doctor ordered a CT and referred us to
see a specialist from UW children's. The CT was now complete and we
had an appointment set to see a new doctor from UW. After 7 or 8 extremely long days the
biopsy came back benign, phew what a relief!!
The
doctor from UW told us that what Addy has is a large Cholesteatoma Right Ear
cyst. She said that it would need to be removed soon as it had grown very large, was right near her brain and these cysts can actually cause brain
abscesses.
Surgery #2 at
UW family Children's Hospital was on May 11th the surgery took 3 or 4 hours. After
surgery the doctor said that the cyst was very large and had both damaged and
overtaken all of the bones inside of her ear so she had to remove everything.
She said Addy would need to follow with an ENT for the rest of her life as
these things can re-grow. There was also hope for reconstruction of her ear
bones at some point to potentially help with her hearing.
Which
brings us to the present: At Addy's last follow-up on January 4th, the
doctor saw some small cysts growing back. She said she could do a CT to check
for more deeper inside but she needs to do surgery and have these removed anyway
so she will look deeper once they are in surgery. The surgery plan is that if
there are not too many or too big of cysts deeper inside that she will remove
those and start the reconstruction of her hearing bones. Surgery is scheduled
for January 15th at 2:00 & we are to arrive at 12:30. The surgery is
scheduled to take about 2 hours and 45 minutes.
