Re: New to ANA

[PAULAV]

Hi
I'm not sure how to post here yet as I am a new member. I am newly diagnosed with an AN that is in the cp angle and on the cranial nervesnot in the IAC. It is small but the location worries me. I have not been to a specialist yet and have no idea what my options will be with a tumor in this location. Can anyone offer me any advice? Please?
Thanks
Paula

[CHD63]

Hi Paula and welcome to this forum of caring, supportive, new friends!

So glad you found us and figured out how to post.  You may want to start your own thread at some point so it does not get lost.  For instance, if you go back to the opening screen, you will find the categories for topics listed.  You may want to choose pre-treatment options.  If you click on that you will then see a tiny box on the far right side that says "new topic."  Click on that, give it a title, and then follow the same format you did to post here on this thread.

In the meantime, tell us a little bit more about your situation.  Do you have the exact measurements of your AN from your MRI?  What symptoms sent you to the doctor for tests?

I would strongly encourage you to send to the ANAUSA for their materials.  They are informative, helpful, accurate, and very positive in their approach to treatment and follow-up.

Beyond that, you will find a wealth of information on this forum by using the search mechanism at the beginning for thoughts on a particular topic.

The biggest thing at the moment is for you to choose your specialist very carefully.  Since ANs are relatively rare, it is vitally important that you have the most experienced physicians possible in charge of your care.  There are many in this country, but not always in the immediate area of where we live.  Many of us traveled great distances to get the best care possible.  There are several medical facilities in the US who will give evaluations of your MRI CDROM free of charge.

Generally speaking, a small AN has more options than a large one, although location and degree of symptoms also plays a role.  Because ANs are typically slow-growing, you should have time to do plenty of research before treatment.

Let us know how you are doing.

Clarice

[Jim Scott]

Hello and welcome, Paula ~

I moved your post to it's own thread so it would receive better attention than being added to a year-old thread begun by another member.  Allow me to repeat the instructions Clarice ('CHD63') offered about how to start a new thread.  When you're reading a forum list, such as this one ("AN Issues'), at the upper-right-hand side of the screen you should see 3 boxes...the one farthest to the right should read: 'New Topic'.  Just click on that box and it will bring you a blank screen in which you can post your message.  It will also ask for a title to the thread you're starting.  Easy. 

Your best advice is likely to come from a medical doctor who has studied your medical history, reviewed your MRI and listened to your comments about whatever symptoms you may be experiencing.  If your AN is small (under 3 cm) you're probably a candidate for irradiation treatment.  If the tumor is really small and not producing any symptoms, observation ("watch-and-wait') may be a viable option. As Clarice correctly pointed out, acoustic neuromas are somewhat unique and have to be addressed on an individual basis by a doctor with extensive experience in treating them. 

I trust that these forums will be of some help to you as you pursue a course of treatment for your AN.  We're here to help so please don't hesitate to ask any question.  We don't have all the answers but we'll try to give you whatever information we can offer or direct you to another source, when appropriate. Check back with us at any time.  We're 'open' 24/7. 

Jim

[cindyj]

Hi, Paula, and welcome!  You may also want to contact the ANA to request info packets that they have with a wealth of information about all things AN related.  Go to the main ANA page under Support Group and there is a link to request the info. 
 
And, as Clarice and Jim said, we will answer questions you have to the best of our non-medical ability

Cindy

[jennifer7]

Welcome Paula
I did not find the forum until after I had surgery so you have already made an important find--the people here are loaded with good advice.
Meeting with a specialist and getting second or third opinions can make it easier to make an informed decision.
Best wishes
Jennifer

[moe]

Hi Paula and welcome,
Since your AN is small (how small is it exactly?) there are many options.
Every doctor will have their own opinion, depending on what it is they do the most, be it one of 3 different  surgical approaches or:

non surgical approaches- Gamma Knife, Cyber Knife or ____________(can't remember the name)!

This is the very hardest part. Doing your homework, getting different opinions and deciding on treatment or waiting and watching.

We are a good sounding board! Let us know how things progress.
Meanwhile, know that this is a slow growing benign tumor that is treatable. What kind of symptoms are you having?
Maureen

[Lizard]

Hi Paula and welcome, its great to have you and this forum is amazing.  Everyone is here for you 
Take care,
Liz

[HeadCase2]

Hello Paula,
  My AN was also in the CPA angle.  The location of your AN will probably not prevent you from any particular type of AN treatment, if you don't decide to watch-n-wait.  But, of course, this is best discussed with doctors who have treated a lot of AN cases.
  Welcome to the forum.
Regards,
  Rob

[cin605]

My AN was also in the cereballa pontine angle and inner ear canal....Neurologist said it was kissing my brainstem....This was at 2cm....sooo watch nwait was not an option.
I know you mentioned you have to get treatment in N.H. due to Insurence reasons.
Let me know how your meeting w/ Dr.Saunders goes....I would investigate your options w/ insurence.i know they only do surgerys at Dartmouth...soo they tend to recomend that you have surgery.
I think the closest place for the other treatments is in Boston.
Don't worry they will give you time to choose.Look forward to chatting w/ you more soon.
Cindy(cin605)

[Rivergirl]

Welcome Paula, many of us in New England go to Dr. McKenna at Mass Eye and Ear, he is very experienced with AN's surgery if recommended is done at Mass General with a neurosurgeon as well. Once you see a specialist you will get answers you are looking for and probably many more questions, this is a good place to do your research and a good place to feel so not alone.