New to Group- 14 year old daughter had AN surgeies in October & November

[CarolineO]

My 14 year old daughter had 2 AN's removed last Fall.
We found out on August 31 that she had a tumor.  IT was the
size of a golf ball.
First surgery lasted 12 1/2 hours. Very successful.  She was up and
walking within 2 days.
They found a second tumor and it was removed 6 days after the first.

She will be having the BAHA implant on 2/11/11. 

Just found this group today.  She will be interested to talk to others
as at times she has felt isolated. 

Dr. VG Stewart with Johns Creek ENT (Gerogia) and Dr. Hadjipanyis with
Emory University Hospital Mid-Town (Atlanta) perfomed her surgeries.  Excellent. 
The doctors were very kind and thorough.  She has no pain.  She quit using
pain killers within 3 days of
each surgery.

[CHD63]

Hi CarolineO and welcome to this forum .....

Sorry your daughter is having to deal with ANs at such a young age ...... but so glad you have found good care for her.

We have a couple other moms of teenage AN patients on this forum.  Hopefully they will join in on responses soon.

Ask away with any questions/concerns you have or stay with us to support others.  This is a caring, supportive group of friends.

Best thoughts.  Clarice

[Jim Scott]

Hi and welcome Caroline. 

Although ANs generally don't manifest until middle age, we have a number of young people frequenting these forums who have had to go through the 'AN experience'.  However, 14 is probably the youngest AN patient we've come across.  I'm very pleased to learn of your daughter's successful surgeries.  I'm sure she'll receive many responses to any messages she posts here.  This is an active website message board comprised of very supporting people, always eager to help, advise and, most of all, support AN patients.  Your daughter will find friends, here. 

Jim

[leapyrtwins]

Caroline -

2 ANs are somewhat unusual.  Is your daughter NF2? 

She'll love her BAHA.  I've had one for almost 3 years now and it's incredible.

Jan

[Cheryl R]

I met a 16 yr old guy at Univ of Iowa while in the waiting room  to see my surgeon.     Couldn't tell he had had AN surgery and was doing well.     Only one AN.      I think it was last spring.                  
     Was your daughters tumors on the same side or on each side?          Just wondering she was NF2.                  Cheryl R

[Kaybo]

Welcome Caroline!

As the mother of a 13 year old, myself, I can't imagine what this was like for you.  I have always said that I was glad it was ME and not my children or husband!  I am glad that she is doing so well.  I was sondering also if she was NF2...

Feel free to ask any question - that is why we hang around!

K   

[lori67]

Oh my goodness, so young to have to deal with such things.  I'm glad she's doing well.  Good thing kids are tough and bounce back pretty well.  She must be a very strong young lady.

I have a BAHA and I'm sure she'll really be happy with hers.

You are both very welcome here.  As adults we can feel isolated because this is not a common thing, but even more uncommon in a 14 year old, so I'm sure it can't be easy for her.  I can only imagine how hard it is for you as her mom.  Lots of good advice from moms and other caregivers on the forum too.

Welcome to both of you!
Lori

[cindyj]

Hey, Caroline!  Glad to see you posted - was so nice talking with you yesterday - what a positive message you have!  I look forward to meeting you and your daughter sometime soon.

Please be sure to let us know how the BAHA implant goes - know she'll do very, very well as she did remarkably well with her AN surgeries! 

Cindy

[CarolineO]

HI, everyone.  Thanks for the replies.

I told my daughter about the site and she will be checking in sometime soon.

Her tumors:  1st one was on the 8th cranial nerve on the right side.  After removal they performed
an MRI and saw another above her brain stem.  It was only 1 cm so that surgery was only 5 1/2 hours.
Genetic results came back yesterday- NO NF2.  Just a very rare case of AN's. 

Danna is doing great and is trying to get caught up with her first semester of missed classes and
work on her second semester at the same time.  We are grateful that her surgeries did not result in any
damage other than the loss of hearing on her right side.  (She had lost of it anyway so her surgery
was performed through her ear- scar is behind her ear.)

We have been stretched in a lot of ways since the ENT appointment on 8/31/10.  Learned a lot but we
are so happy that Danna no longer has headaches, vertigo, etc.  Now the BAHA implant next week and
we'll see what life has in store!


Thanks for having a group!

[CarolineO]

One more note - her first tumor is was between 3.5 cm- 4 cm.

[wendysig]

Hi CarolineO and welcome,

I'm glad to h ear that  Danna is doing to well.  One AN is a lot to deal with but I can't even imagine the stress of having to go through two AN surgeries back to back, especially at such a young age.  She must be a very strong young lady and have a strong sense of being supported by her family.  You are  both welcome to ask questions, vent or just compare experiences, we are all here to support one another.

Best wishes,
Wendy

[Danna O]

Hey everyone!
Im Danna. The subject of this forum. I can say that handling those 2 tumors was stressful and very hard. A lot of tears were shed wheter they were happy because im alive and can hear or sad about having to deal with this. I got through it. The doctors said I would definately have facial paralysis, but ther next few days after surgery they came and checked on me, and i have NO facial paralysis. Being home and alive, I was inspired to write my story and share it. Its posted on my caringbridge site. http://www.caringbridge.org/visit/dannaokeson . You should check it out. (:

[opp2]

Hello Pretty Girl! What a trooper you are. All the best with the BAHA and school. I believe in you.

[suboo73]

Hi Caroline and Danna!

I saw your posts and read Danna's story on caringbridge - WOW!

Danna - you are an amazing young person, and i am so thankful you got through the surgeries and are now on your way to a full recovery!
Having an AN is no fun - thank you for sharing your very inspirational story.
Caroline - i am so glad you found this Forum - the folks here are FANTASTIC, very supportive and caring.

Best wishes with the BAHA on 2/11!

Please keep us posted on your progress.

Sincerely,
Sue

[lori67]

Hi Danna!

Thanks for sharing your Caring Bridge link.  I just read it and it is amazing! YOU are amazing!  And gorgeous too, I might add!   

I'm so glad to hear you're doing well.  You are a shining example to everyone on how to handle bad situations with grace.  I have a feeling you are going to accomplish many wonderful things in your LONG and HEALTHY life and will definitely continue to make this world a better place.  I know your family and friends are very proud of you.

Keep smiling!
Lori
p.s.  If it makes you feel any better, it took me 5 hours to finish homework that should have taken an hour too - and that was long before my surgery!  At least you have a good excuse!