Author Topic: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11  (Read 7797 times)

micca82

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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.
MRI found 5.1cm AN on left on 3/18/11: age of 28
Surgery 4/5/11 with dr.Tamargo and dr. Francis. @ johns Hopkins
Whole tumor removed, facial nerves in tact, but unresponsive
Platinum eyelid weight on 4/6
Left facial paralysis, numbness, double vision

God is the Healer

Mickey

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My prayers are with you and your family. Keep positive and here is to a speedy recovery! Best wishes, Mickey

micca82

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Thank you so much- Thank you-
MRI found 5.1cm AN on left on 3/18/11: age of 28
Surgery 4/5/11 with dr.Tamargo and dr. Francis. @ johns Hopkins
Whole tumor removed, facial nerves in tact, but unresponsive
Platinum eyelid weight on 4/6
Left facial paralysis, numbness, double vision

God is the Healer

CHD63

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I replied on your other post .....

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

TJ

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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

lori67

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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
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Tod

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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
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mark241

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My prayers are with you for a successful surgery, and  speedy recovery!!
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

rayden1

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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

rayden1

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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

Kaybo

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Re: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11
« Reply #10 on: March 29, 2011, 03:14:21 pm »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

BostonBill

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Re: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11
« Reply #11 on: March 29, 2011, 04:30:32 pm »
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
Diagnosed Dec 21, 2010, 1.75 x 1.75cm plan is for retrosigmoid removal scheduled for June 15th at MGH by Dr Barker & Dr Lee. Putting off so I may enjoy my sons senior year varsity hockey, lacrosse seasons and graduation. That and our annual trip to Cancun in May.

jaylogs

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Re: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11
« Reply #12 on: March 29, 2011, 10:35:13 pm »
I wanted to offer my best wishes and that you are calm and stay positive throughout this whole ordeal!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

moe

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Re: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11
« Reply #13 on: March 30, 2011, 08:38:03 am »
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
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

MNTim

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Re: 29 year old female diagnosed with 5cm AN on left side Surgery on 4/5/11
« Reply #14 on: March 30, 2011, 07:51:13 pm »
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
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy