Just diagnosed with AN 8/08/2012

[jasminbrown]

Hi everyone!
My name is jasmin and im 21 years old.. I have Hydrocephalus with a VP shunt and was diagnosed when I was only 3 months old. I have had a pretty  significant amount of complications with my shunt. I had/have been having a number of classic shunt malfunction symptoms lately so I was scheduled for an MRI not only did it reveal one of my ventricles are collapsed in my brain (slit ventricle syndrome) but that I also have a small acoustic neuroma 7.5mmx5mm. The news was quite shocking and upsetting. Im not sure which way to turn..all my life I have had the liberty of hiding my condition from others especially employers.. Im not so worried about losing the hearing in my left ear but the fear of having facial paralysis is terrifying. I just need some advice on treatment options please! Thank you all in advance God bless

[LakeErie]

Jasmin, Your tumor is still relatively small so you probably will have all three options open to you:
watch and wait, surgery, and radiation. You need to discuss all your options with doctors who have experience in treating AN's. You should also ask for the information available from the Association.
Facial paralysis is always a possibility, in my case of an almost 5 cm tumor the odds given to me were 10%, but in the hands of an experienced surgeon that complication is not frequent. I did have some facial weakness following surgery (grade II) but that resolved on its own in a few weeks. The more you learn, the less frightening the tumor and its treatment will become. There are no guarantees, but you will get through this. There is help out there for treating the tumor and for dealing with any complications that arise from the treatment. Good luck.

[It is what it is]

Hello Jasmine.  I'm sorry to hear that you have this new diagnosis on top of everything else.  I also had a small AN but was starting to have symptoms.  I wanted to save my hearing if at all possible and avoid worsening of my symptoms, so I chose the middle fossa surgery at HEI on 8/1.  I'm very happy with that choice.  They are incredibly skilled with lots of experience. 

All of us make decisions about treatment based on our unique set of circumstances.  I would recommend sending your MRI and medical information to different medical centers specializing in this particular tumor so you can consult with the specialists directly.  I did this by phone, email and letters. 

My thoughts are with you,

Karen

[leapyrtwins]

Hi, Jasmine and welcome to the Forum 

I'm sorry to hear about your AN and know just how shocking being diagnosed can be; I've been there 

As LakeErie said, your AN is relatively small so watching and waiting might be an excellent choice for you.  Another option - depending on the location - may be radiation.   People who have radiation typically don't have facial nerve issues; and lots of us who had surgery don't have facial nerve issues either.

You should contact the ANA for their informational brochures - they are free for the asking - and are very helpful; written in easy to understand terms (not medical-speak). 

You should also get as many medical opinions - from doctors qualified to treat ANs who've had lots of experience - as you feel you need to make your treatment decision.  It's very hard to decide, but once you educate yourself you'll feel less stressed and fearful. 

I'm not sure where you live, but if you don't mind telling us, people on the Forum can suggest some doctors in your area.  I'm in the Chicago area and highly recommend my doc.  He may or may not be close enough to you for treatment though.

Good luck.

Best,

Jan 

[Chrissy01134]

Hi! I do not really have any helpful information for you, but wanted to let you know I am in the same boat.  I am 31 however.  I have been shunted with a VP shunt since 13 days old.  I too thought I had a malfunction going on, but they only did a CT scan so they did not find anything. I had an MRI in May to look for a Pituitary tumor when they discovered mine.  It is only 3 mm and does not seem to be a concern for anyone but me. It is the same side as my shunt so it scared me a bit.  I will be thinking about you and if you even need to talk feel free to email me 

Chrissy