ANA Discussion Forum
General Category => AN Issues => Topic started by: micca82 on March 29, 2011, 09:02:09 am
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I'm 29 year old and was diagnosed with 5cm AN on 3/18
My surgery is scheduled with Dr. Tamargo @ JH on 4/5. Dr. Francis will be the ENT for the surgery.
I'm really scared. I have 3 little girls (4,3,1) and the past week since I was diagnosed was the worst week of my life.
I'm emotionally more stable now, thanks to my family and friends.
I hope I get to recover soon from the surgery and my facial nerves are preserved. I didn't know I was this superficial. (really, I should be thankful that it's not cancer and I'll live) but what scares me so much is the though that my little girls will avoid me because of my appearance. Unfortuantely, they're just too young to understand, I think.
Please keep me in your prayers, and my family.
Thank you so much for reading my post.
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My prayers are with you and your family. Keep positive and here is to a speedy recovery! Best wishes, Mickey
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Thank you so much- Thank you-
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I replied on your other post .....
Many thoughts and prayers.
Clarice
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Please try to stay positive. You are Mommy to those precious little girls, they will love you anyway it turns out.
Best of luck
TJ
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That doesn't make you superficial, that makes you normal!
My youngest were 4 years old and 10 months old when I had my surgery. I was worried how they would react also. My husband brought them in to the hospital when I was moved to a regular room and I still had the giant bandage on my head. My 4 year old looked a little concerned at first, but once I talked to her and got to hug her, she realized it was still me. I don't think the 10 month old really noticed anything, to be honest with you. Then my 4 year old insisted on helping me walk down the hall a million times a day because she knew if we made it to the nurse's station, they'd give her a popsicle for being such a good helper. Where was my popsicle??? ???
I did wind up with facial paralysis and my biggest concern was that my kids would never know when I was smiling at them. My husband assured me that they know and they can see it in my eyes. Turns out he was right (don't tell him that! ;)). Hopefully, you won't have any issues with your facial nerve, but if you do. don't worry - you are mom and you'll always be mom no matter what and they will love you just the same. I like to think I've been a good example for my kids on how to handle adversity.
I work around kids a lot and I was worried how they would react, but you know, kids are really good - better than adults sometimes. In 4 years, I've only had one little boy ask why my mouth didn't move quite right and he wasn't even mean about it - just curious. I explained it to him and that was the last of it.
You and your family will definitely be in my prayers! If you want to talk, send me a PM with your phone number and I'll give you a call.
Go hug your little ones! ;D
Lori
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Thoughts, prayers, and wishes of good luck are yours.
Our grandchildren were living with us when I had surgery last year and the oldest had turned 8 a couple nights prior to the first day of surgery (mine was abnormal). The youngest was 2.5. I had significant facial paralysis when I finally came home. That did not seem the bother the boys at all - there was never any shortage of hugs. What did bother them, particularly the oldest, was my limited ability to speak because of vocal cord paralysis on the left side. But it was disappointment because my birthday gift to him had been a set of books that I had promised to read to him. Please note: my experience was very unusual, but despite that I have had overwhelmingly positive results.
Children are infinitely adaptable and they will love you.
-Tod
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My prayers are with you for a successful surgery, and speedy recovery!!
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Hi micca82
Your kids will not notice I promise, They will love you no matter what. I am praying for you for great outcome and hope you have full
nerve function. Best of luck to you in your surgery.
Ann x
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Hi micca82
Your kids will not notice I promise, They will love you no matter what. I am praying for you for great outcome and hope you have full
nerve function. Best of luck to you in your surgery.
Ann x
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Hello!
I did not have children of my own yet when I had surgery but I taught 1st grade so I had 22 kiddos instead of the 3 I have now! They were great - I have to be honest & say that the FIRST time they saw me, I think it took a second but like others have said, after that initial hug and knowing it was me - everything was FINE!! I am very open and have kids ask me all the time about my face or eye...I just answer them and go on and then they are super good with it too!
Good luck - I know that you will do fine!
K ;D
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Good thoughts and many prayers for a positive outcome for you! Stay positive, your little girls love for you is unconditional!
Keep us posted!
Bill
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I wanted to offer my best wishes and that you are calm and stay positive throughout this whole ordeal!
Jay
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Hi Micca and welcome to the forum :)
It is a scary process going into surgery and not knowing what the outcome will be. The docs don't know until they get in there.
Have faith in your doctors~ they KNOW what they are doing.
Do mention the possibility of keeping some of the tumor there in order to preserve the facial nerve if that is feasible. "Jim" one of our moderators, had the tumor debulked and then had radiation to the remaining portion.
Like I said, all depends on the location.
My tumor was large and complicated and resulted in the facial nerve cut & subsequent surgeries to correct. It is NOT the normal! My tumor had been in there just way too long...
But life is good, and I do have movement from my previous surgery.
Prayers going out for a successful outcome on 5 Apr. We will see you "on the other side." :)
Maureen
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Micca,
First off welcome to the forum. We all wish we didn't have to meet this way but it is an incredibly supportive group. Take advantage of the caring and experienced advice given here. I was diagnosed in August of 2009 and just started using this site within the last month.
My tumor was over 5cm at diagnosis so I know your fears. Remember the most important thing is to have as much tumor removed as possible. I went through the cautious phase to preserve the facial nerve, I was going through a divorce so concerned about appearance. Three surgeries later the tumor is gone. Three surgeries is not typical but I wanted to preserve the facial nerve. Finally I relied on advice other than my own and was encouraged to address the tumor aggressively.
Yes I have facial weakness but there are medical ways to make it better. I had a 7/12 graft. As someone said earlier your kids will overlook it. My 9 year old daughter wanted me to have lunch at school the week after I came home from my last surgery, 10" scar and facial weakness included.
My prayers are with you on your new journey.
Tim
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Micca,
Welcome to our group. I'm sorry for the reason you are with us, but we are here for you. Your kids will love you, no matter what. I will be praying for a successful operation on April 5. Let us know how it went when you join us as a postie.
Sandy
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Micca -
did your surgeons mention debulking your AN? Because of it's size, it's a good idea to only take part of the tumor (debulk it) and radiate the rest.
If they haven't talked about this yet, you might want to raise the question. Debulking is becoming more common with large ANs (5 cms falls into that category) and it helps minimize the risk of facial nerve damage.
Jan
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You will be in our thoughts and prayers for a successful surgery!! Take it slow and have patience with the recovery process!!
Karen
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Micca, I too suggest you ask your doctors about debulking the tumor and irradiating the remaining portion. It would probably give you a higher chance of preserving the function of the facial nerve. Your doctors will know if this is feasible or advisable. They might make a decision once they're inside and have a good view of the tumor's orientation. But the important thing at this point is for you to let them know what your priorities are. Typically the doctors will have the following priorities for AN treatment (in this order):
1. Stop the tumor from growing (either by complete removal or a combination of de-bulking and radiation),
2. Preservation of the facial nerve function,
3. Preserving balance function as much as possible, and
4. Preserving hearing.
The relative importance of goals #3 and #4 are sometimes switched according to the patient's needs. For example, a sedentary musician would place greater importance on hearing preservation than keeping good balance.
But even though preserving facial-nerve function is very high on a neurosurgeon's list of priorities, it doesn't hurt for you to voice your concern and wishes. It may indeed affect some of the decisions they make during surgery.
I also want to echo what others have said: your kids will love you no matter what you look like. They certainly don't love you for your looks. You will be the same person on the inside, the one they have always loved and will always love. Nothing so superficial as looks can ever mute the love a child has for their mother.
We are all wishing for the best outcome for your surgery.
TW
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Micca,
I am sorry i did not see this thread soon...but regardless, i will start with some major prayers for you today, hoping that if you are now on your way to surgery, all will go well.
When i first came to the Forum, there was a wonderful young lady named Kimberly, about your age and she had treatment with Dr. Tamargo.
Although her tumor was smaller, she had a good outcome. [Her name on the Forum is Zinger1905].
Anyway - i too met Dr. Tamargo for my own AN situation. I thought he was formal and knowledgeable.
I have always said (for me) that bedside manner is secondary - as long as the surgeon is skilled. (this come from seeing my daughter through 2 major surgeries....)
I know you have had a lot to absorb in a very short period of time - my thoughts for you now are that your surgery goes very well and you are able to enjoy the wonderful family you describe!
For me, that's what it is all about - family and friends. As you have already discovered, we are here for you as well!
If you are hubby is able, please have him send an update.
Prayers all around on this day.
Sincerely,
Sue
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Today is the surgery day. Praying for a positive and successful outcome :)
Maureen
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good luck from down under
Laz
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Just checking in again to see if there's been an update - been thinking about you today...
K ;D