Hey guys....

[JRD]

I am a newbie here so I hope you guys take it easy on me^^

I was just diagnosed with AN last week and its been kind of hard.  I'm not sure of the size of my tumor but its located on facial nerve.  I didn't experience any hearing loss, dizziness, or headaches but my facial movements (the left side of face) have been slowly gettin worse.  I noticed that my left eye closed slower than my right...things like that.  Well needless to say I went to the doctor and he told me I have a tumor and I was like "Whoa!"

Its been hard.  I know I dont have two many options, radiation or surgery.  I've been told the advantages and disadvantages of both procedures.   Since I am pretty young (22) I am leaning towards surgery rather than radiation.  I'm kind of scared though because I've heard the stories about facial paralysis and loss of hearing, etc. 

Now obviously the goal is to avoid both loss of hearing and facial paralysis.  So I have been looking into my options.  I'm just curious if anyone out there has had these same symptoms and what they did to successfully treat this condition. 

I am also looking into the instiutions that may best be suited to help me.  From what I heard from the doctor who diagnosed me, he said that if im looking into radiation then Univ. of Pittsburgh would probably be best.  If I want to go to the surgery route, he recommended to me a local neuro-surgen at U-Penn.  But he also mentioned to me that theres a famous institution (I belived its called the House Clinic?) located in Los Angeles that specializes in treating such condtions.  If you guys have any success stories or have any opnions on any recommended insitituions (whether it be radiologist/surgery) please feel free to share them with me. 

I want everyone who is dealing with AN to know that my thoughts and prayers are with you and your families.  I believe everything will be good.  Thanks guys...

JRD

[shoegirl]

JRD,

I am sorry to hear that you have Acoustic Neuroma.  It is a very scary thing when they tell you that you have a brain tumor.  But you have come to the right place.  I found out about mine just about a month ago.  Everyone here is very willing to share their experiences and are very open and honest.  This forum has really helped me get through days when I didn't know what to do or where to turn.  Some favor surgery over radiation and vice versa.  Just make sure you do lots of research and decide what is best for you.  Some of that will depend on the size of the tumor.

Lots of people here have been treated at House in L.A. and have wonderful things to say.  Pitt, Stanford, and The Barrow's Institute are also excellent. I have heard good things about Penn. too. They all  have great websites.  There is lots of information on the web, so again research and more research.  Don't be afraid to ask questions!

Best Wishes!
Suzanne     

[jiguana]

Hi

Are you from PA or the Philly area?  I have an AN and had Gamma Knife at Thomas Jefferson Univ Hospital.  My doctor was Dr David Andrews.  I highly recommend him.  He is a leader in this feild. He does regular neurosurgery as well as Gamma Knife and FSR.  My tumor was 2cm. It has been 6 years now and I have no side effects. I go back every two years for MRI's, and my tumor is just a dead mass now.  If in 4 more years there is no change, which he doesn't anticipate, I will be considered cured. 

I first checked out U Penn for surgery, but then found out about Dr Andrews. I went to check out FSR, which is lower dose radiation over a months time, but since my hearing was already shot, they decided on GK which is done in one shot.   He has a 99% success rate with radiation. I am glad I chose this route.  As you know, the choices are not too many, and all the side effects scare the hell out of you. But as others have told me, one day you will know the way you want to go that feels best for you. 

I hope I was of help, and again, I highly recommend Dr Andrews.  Good luck in your decision.

Joe

PS - I had mine done in the middle if Hurricane Floyd so I was an even more nervous wreck.  We went home the same afternoon of the surgery and the expressway was all flooded.  The first thing I did when I got in the house was grab a beer.  Probably not recommended, but it was a tough day

[gcb]

JRD,  READ everything you can. When you think you’ve read enough read some more. I recently went through GK for my 1.8cm AN and am very pleased with the results from Pitt. Treatment options vary and the decision is up to you and your family to make the decision.

Read my post from Aug of this year, there are many resource/links provided to give you some real, documented studies.

http://anausa.org/forum/index.php?topic=349.0

You’ve come a great forum for additional resources. Don’t be afraid to ask questions and share your experiences.