just diagnosed

[annora.potter]

Hi my name is annora potter and my 16 year old daughter was just diagnosed. The nerosurgeon is recommending surgery because of pressure on the brain stem. As a mother I a freaked out and scared for her. I am a Christian and have a firm belief that God is ultimately in control, that is what is keeping me going.Any helpful information owuld be greatly appreciated.

Annora Potter

[leapyrtwins]

Annora -

I'm sorry to hear about your daughter and I'd imagine that both you and she are pretty freaked out at this point, but things will be okay.  We have some young patients on the Forum, so you aren't alone.  

The possible side-effects of surgery are scary, but there are some wonderful outcomes.  I had surgery myself in May 2007, and while I was a lot older than your daughter (45 1/2), my outcome was very good.  My only lasting side-effect is SSD (single-sided deafness) and I have a BAHA implant that helps me with that issue.

First and foremost, I suggest you contact the ANA for their informational literature.  You'll find it very helpful and easy to read.  I personally think it's invaluable.

You say your daughter has seen a neurosurgeon, but I'd also like to recommend that she see a doctor who treats ANs with radiation - gamma knife or cyber knife - if her AN is small enough to warrant it.  The usual threshold for radiating ANs is 3 cms.

If you tell us what part of the country you are from, someone on the Forum may be able to suggest a doctor or doctors for you and your daughter to consult with.

Please feel free to ask us anything; it's part of what we're here for.

Best,

Jan

[anissa]

Welcome Annora, I'm so glad you found this forum.  I am also a Christian and truly feel that God covered me and my family throughout the process.  His grace is enough.  I will be praying for you and your daughter. 

[CHD63]

Adding my welcome, Annora .....

You are understandably very concerned about what is going to happen.  You have come to the right place for care and compassion ..... as well as many answers to the questions that are undoubtedly running through your head.  That is what we are here for, so please ask any question you have.

Tell us a little bit more about your daughter's symptoms that sent you for testing and how big her tumor is.

By the way, this forum has some of the best pray-ers ever!

My personal thoughts and prayers for peace and proper direction for you and your daughter.

Clarice

[lawmama]

Annora,

I cannot imagine how hard this is for a mother.  I am also a Christian and I truly believe that God's hands guided my journey and ultimately my treatment decision.  I'm very happy with my outcome, so I am a believer that prayers are answered if we follow Him. 

I'm sure this is a very scary time, but you have found a very supportive community here.  Try not to be overwhelmed with information at first.  The good news is that these tumors are VERY treatable and your daughter will have a full and rich life.  She will be ok!  As terrifying as "brain surgery" sounds, this procedure has a very low risk for very serious complications.  Still, you and your daughter should ask the doctors a LOT of questions before you go ahead with anything.  Make sure you know everything you can know about the doctor, the procedure, and the realistic risks that she may be facing.  Do not be afraid of getting second opinions!

My prayers are with you!!!

Lyn 

[Pooter]

Annora,

I'm sorry to hear that you're daughter was diagnosed with an AN.  Like her, I really didn't have the option of radiation because of size (3cm) and the pressure it was already putting on the brainstem.  I'm here to tell you that even with all of that grim news prior to surgery, I sit here 19 months after my surgery and aside from being SSD and very minor facial weakness (still getting better), I'm living a very active (2 kids of my own both under 10) and happy life.

I can't offer any advice really other than to help it become clear to you and to her that everything will be fine in the end.  Any side-effects of surgery can be dealth with and adapted to if needed.  We're also pretty active in our Church and spent a great deal of time both before and after surgery going there.  I firmly believe that it was with God's help and our faith in Him that things turned out the way they did..

You guys will get through this.  If there's anything any of us can do to help, please let us know..

Regards,
Brian

[Jim Scott]

Hi, Annora - and welcome.

I'm sorry to learn of your teen-aged daughter's AN diagnosis (they usually don't show up until many years later) but I'm glad you discovered the ANAQ website and forums, and decided to post. 

If it's any comfort, I was diagnosed when I was almost 4 times your daughters age.  I had a very large tumor, pressing on my brain-stem.  I underwent retrosigmoid surgery followed by FSR 3 months later.  Bothe were successful and not only did my rather severe symptoms disappear but I experienced almost no complications from either procedure.  Now, over three years later, I'm doing fine.  I remain deaf in one ear but cope with it quite well.  Any AN-related deficits I have are very minor and do not negatively affect my quality of life at all. 

There are no guarantees but I'm sure your daughter will come through surgery just fine and have a good recovery, too.   We'll be rooting for her!

Jim

[lori67]

Hi Annora.  I'm glad you found the forum.  I'm sure it will be a good source of information and support for you and your daughter.

As a mother myself, I can't imagine how hard this must be on you.

Many of us have had good outcomes after our surgery and I know your daughter will too.  Please take the time to research all the options available and I have a feeling you'll know when you've made the right decision.  God has a way of letting you know the right thing to do.

Good luck to you and your family!
Lori

[moe]

Annora,
So sorry to hear that you and your young daughter have to go through this.
Great advice from others- let us know what the specifics are.
Prayers going out to you and your family during this time for peace. It will be OK.
Maureen

[michelle d.]

Hi Annora...I'm sorry about your daughter-that must be scary.  Last summer when I first found that I had this weird thing acoustic neuroma, it was such a strange and scary time, very surreal. I wish now that I had come onto this forum! The people here are so reassuring and helpful. I just had surgery about 8 weeks ago, to remove a large tumor that was pressing against brain stem.  I chose surgery and it was hard for a few weeks but I'm here to say that I'm feeling pretty great...a little "fluffy" but getting stronger every day and no serious side effects, other than I no longer have hearing on one side. And I'm already back to swimming laps and light running.  I, too, am a Christian and had tremendous support from family and friends...some people I didn't even know. And my surgeons were awesome, as were the nurses and staff at the hospital. You're in good company here --a good support network from people who have "been there" and you can glean good information from many topics concerning your daughter's care. Prayers, too!   We're listening....~michelle d.~