Chronicling The Comerfords

Friday, March 30, 2012

Amelia and the Cholesteatoma

Sounds like an interesting title doesn't it? Maybe I could write a children's book to pay for this surgery...

A few weeks ago we were at our pediatricians office for a completely different matter and she found what looked like a tiny pearl in Amelia's ear. She said it looked like a cholesteatoma, a benign tumor behind her eardrum, and referred us to a pediatric ENT. This week we met with the ENT to confirm that it was indeed what our doctor thought and set up surgery. Good news is that we have some time because it is so new.  We are going to wait until school gets out so she will not miss anything there.  I almost hate that I am waiting until may because it gives me more time to dwell on it.

Here is what I've learned so far (and let's remember I am just an Mrs not an MD)... As far as the tumor goes there are 2 types, one you are born with, which she has, and one that is acquired. She has the better of the two and she is the earliest detected case he has ever seen. This is great news because it is not touching the eardrum yet and he feels pretty certain it has not grown too deep towards the brain bones. From what I understand Cholesteatomas themselves do not seem to be so bad. They are not cancerous and would never become cancerous. They are just a mass of growing cells. The problem seems to be the location. They grow out and rupture the eardrum and cause hearing loss or grow in and cause an infection around the brain (super bad news). He will know more when he gets in there, but he is thinking this will be a best case scenario procedure. From the small growth on the outside, there should not be much growth on the inside either.  He said our pediatrician was basically a rock star (which we already knew) for noticing it this early. So, while I am not excited at all that we have to go through this I feel pretty comfortable with the situation.

I am most nervous about the pre-op blood work, putting her to sleep and the pain in recovery.  Our appointment at the ENT was pretty miserable.  I basically had to lay down on top of her to hold her still while a nurse held her head still.  She was not in any pain at all, just nervous and upset.  I can not imagine how she will be when they start poking her with needles and put a mask on her little face.  The good news about Scottish Rite is they let the parents stay in the back until the children fall asleep.  I'm sure this is great for the children and AWFUL for the parents.

I also found out that the ENT doctor is married to a girl that my husband went to school with.  Although I have never met her and do not know this man at all, it does give me some comfort.  You know, my people knows his people.  That alone makes you a better surgeon, right :)

Keep our family and Amelia's little left ear in your prayers over the next few months.  I know everything will be just fine, I am just a nervous Mama.

Doesn't seem to be bothering her, does it?!

2 comments:

  1. Hi, I just found your blog. I am setting up a page about congenital cholesteatoma, and was wondering if you'd like to take a look. It's at http://www.bornwithcholesteatoma.net. I have seen your girl had her surgery and did pretty well, which is great to hear. I haven't heard too many stories like this yet, but so very glad for you. Is a 2nd surgery planned?
    Blessings to your family,
    Tasha

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  2. Tasha, I will check it out! At this point a second surgery is not planned. We pray it will not come back. We go back in August for a follow up in August then will continue every 6 months afterwards. The pediatric ent said she is the best and earliest case they have seen. We are so thankful for our pediatrician following her instinct. We really feel like the Lord was looking out for her (and me because I freak out about everything :) ) I hope your child is doing well.

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