I am a newbie....

[sher]

Just diagnosed today with a 2 centimeter AN. Not sure what to do...
Sher

[Sue]

Hi Sher,

Welcome to our little club.  Sorry you are becoming one of our newest members.  First, remember to breath!  It's hard when you are newly diagnosed with something you probably never heard of before. But breathing is a good thing!  And keeping things in perspective is good also.  That's also hard to do at the beginning when the news is so fresh and you are feeling overwhelmed and confused.  This is a great site for you to learn about things, ask questions, find a friend, whatever it takes to help you get through this.

  I also have a 2 cm AN.  For various reasons, my treatment was done via Gamma Knife radiosurgery and now it's been over two years since my treatment and all is going well.

You can join the ANA here and they will send you literature to look at.  That's a good first step.  Your doctors will no doubt talk to you about a course of action.  My advice would be for you to learn about Acoustic Neuroma and to learn the different methods of treatment. There is Watch and Wait, which probably won't be advised for you since your AN is in the medium catagory, microsurgery and radiosurgery.  Since your tumor isn't in the large catagory, you might look into Gamma Knife or Cyber Knife or one of the other delivery systems for radiation which can effectively kill the tumor.  Or you might decide that you'd rather have the surgery.  You should talk to doctors that will give you a good idea of what each option would entail for you. 

Or you can begin right here and ask a question. Any question.  And somebody here will try to answer it for you.  We've got some great people on here who would love to help you out any way that they can.  Just know this isn't the end of the world and life goes on after AN's.  Yes, it will be different in some way or another, but you'll be okay.

To help you get started, I'll ask a question or two of you!   Where do you live?  How old are you?  What are your symptoms?   

So glad you found this site.  It's a big help and has been for so many people. 

Take care, Sher.

Sue in Vancouver, USA

[Joef]

Hi Sher,
You can join the ANA here and they will send you literature to look at.  That's a good first step.

Good advice! ... get a 2nd/3nd opinion ! .. have MRI copies? .. many hospitals will accept copies sent to them ..and call you back for Free !... East and West coast have Major Hospitals that deal with AN's ..

and most of all .. relax!! (plan that summer vacation!) tumors are slow growing .. there is no rush ! take your time to get your options .... We've all been there at the "oh crap" moment when we learned of our AN's ... and lived to tell the tale.....

[ppearl214]

Hi Sher and welcome.  As shared by others, the ANA has a wealth of info available for review... as well as this website.  Also, by posting questions here, you get patient-to-patient experiences.... so take your time reading the info available on the site. It can feel overwhelming at times, so just remember to take your time.

Should you need help navigating the site, just let any of us know... or PM/email the Moderators... that's why we're here.

Again, welcome.
Phyl

[er]

Welcome Sher,

Sorry about the AN, but don't be afraid.  You are in the right place with friends, they will all make you feel like one of the family.
They all have tons of information plus sites where to go just ask.
Our prayers are with you.
eve
 

[Kate B]

Just diagnosed today with a 2 centimeter AN. Not sure what to do...
Sher

Hi Sher,

I am rushed right now, but will get back to you with more information. Reading various threads will give you volumes of information.

Depending on your tumor's location, it will most likely be responsive ive to any of the treatments. When I found that out with my own 1.5 cm tumor, I felt literally confused because every doctor was telling me that their protocal would work. 

Pre-treatment phase
One size does not fit all
 
A guide through the Acoustic Neuroma decision-making process
I have been reading as much as I can about Acoustic Neuromas (ANs). I believe that there is more than one way to approach an AN, and one-size treatment does not fit all. It is a personal choice made for specific reasons which take into account all of the patient's unique circumstances. In my own journey, I vacillated between each treatment like a piece of kelp in a vast ocean before I was finally able to make a decision. Each new bit of information that I learned from others on the AN-Support mailing list opened my eyes and caused me to ask my doctors and myself new questions. In turn, it made me think about what I valued in my treatment outcome, and oftentimes caused me to jump from one treatment protocol to another.

Throughout this process, I have learned that there are several key questions one needs to ask oneself in order to make the best decision. Each one of these questions, when answered honestly, will direct you through the process.

What are my expectations after treatment? For example, is hearing preservation something that is possible and desired? Consider whether one's current hearing level is conducive for a hearing preservation treatment approach? If so, certain options are available. If not, then other options can be considered which do not offer hearing preservation, but which may offer better results with respect to other possible complications.

Are my tumor size, location and hearing level the appropriate match for the treatment I am considering? With tumors over 3 centimeters, Gamma Knife (GK) would not be recommended by most Gamma Knife centers. Also, if one's hearing level does not fit the 50/50 rule *, then certain surgeries would be discouraged as options at some surgical centers.

Do I need to know that the tumor is removed, or would I be satisfied knowing that its growth is arrested? If removal is important to the patient, then surgery is the only route, and the patient must then decide which surgical approach suits their situation best. On the other hand, if simply arresting the tumor's growth would satisfy the patient, then radiation is an option.

How important is the availability of long-term outcome data in the decision making process? Fractionated Stereotactic Radiation is the treatment with the least amount of outcome data, from about 1994. Gamma Knife has data from about 1987. Surgery has a much longer history. Important to remember, though, is that even within each of these options, the protocols are constantly being refined in an attempt to improve the patient's outcome. (Note: Published statistics don't minimize the importance of discussion related to a side effect with other patients, it just puts the risk of those effects into proper perspective.)

What does the data from the published literature tell me about expected outcomes? Consider both short- and long-term results. (Note: In addition to the published literature, discussion related to a side effect on the AN-Support mailing list or the ANA guestbook will help the patient understand the reality of living with various outcomes.)
How important is it that the procedure I choose has gone through peer review by doctors? Peer review is the highest standard in medicine because conclusions must be drawn from actual data. No conclusion can be drawn that cannot be supported by the data. In Editorial, Sponsorship, Authorship and Accountability, which appeared in the September 13, 2001, New England Journal of Medicine, it was stated "...we recognize that the publication of clinical-research findings in respected peer-reviewed journals is the ultimate basis for most treatment decisions...This discourse is vital to the scientific practice of medicine because it shapes treatment decisions made by physicians and drives public and private health care policy." (Note: Because they are older procedures, Gamma Knife and surgery seem to have the most literature that has gone through review in the posting of their results.)

What is your age? One neurosurgeon I visited told me that at his age (68 at the time), he would wait and watch even at the risk of going deaf.

If you decide to wait and watch, at what point would you choose to seek treatment? Is it tumor growth to a specific size threshold, or perhaps a drop in hearing level, that would be the catalyst for action? [/b] [/b] [/flash]
Where are the patterns for successful treatments? Which hospitals, clinics and doctors for each of the various types of treatments have the highest success rates? (Note: I monitored the AN-Support mailing list and the ANA guestbook for several months before deciding on a treatment and noted that patients routinely applauded certain doctors with successful outcomes, or that certain patients cited the same institution or doctor for certain complications, such as facial paralysis.)

Once I decide on a treatment, will I have access to a doctor who is an expert in this field? Have I contacted some of that physician's patients for further information? (Note: even if it is a highly regarded institution, I recommend multiple contacts--I found each doctor provided new information.)

How do I determine whether my doctor is an expert? Before scheduling treatment for your acoustic neuroma with any physician, it is imperative that you discuss the doctor's experience specifically with ANs. As a general rule of thumb, seek treatment from providers who have performed more than 100 procedures prior to yours using the same protocol/approach that s/he recommends for you, and who has continued to treat ANs in recent months. Ask the doctors about their rates of complications, and be sure they understand that you are asking specifically for their complication rates, and not quoting the statistics from published literature. It is widely believed that the experience of the physician is one of the most important factors affecting the patient's outcome. We have prepared a list of questions you can use when you visit the doctor.

Will my insurance provider cover treatment at the facility I have chosen? Check your insurance policy and make necessary phone calls to determine if the facility/physician is in or out of the network. Find out what the difference in individual responsibility (i.e., 10% or 20%) will be, depending on whether the facility is in or out of the network. According to your policy, what is the maximum out-of-pocket deductible that would be your responsibility during a calendar year? How can I find out what is considered reasonable and customary charges?
Again, all treatments are viable options for some patients, yet all could have unanticipated consequences. Every patient must make a choice that reflects their tumor's size and location, their age, general health, pre-treatment hearing level and lifestyle. One size treatment does not fit all, and it is a matter of making the most appropriate match--one that you believe in. You must be comfortable with your doctor and have confidence in their experience, expertise and compassion.
* The 50/50 rule suggests that individuals with a pure-tone average greater than 50 dB and speech discrimination less than 50% do not have useful or salvageable hearing. Not all patients with diminished hearing would agree with that, and speech discrimination is a rather subjective test.
 

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No medical decision should be based solely on information provided here.

Kate

[Kaybo]

Sher
Greetings from Texas!  I know you are very confused & overwhelmed right now, but it will get better.  As the others have said, do your research.  In my opinion, the decision for treatment is the toughest and it will help if you are prepared to do that.  All of us here are cetainly willing to answer ANY question that you might have.  I would be more than happy to chat with you (i have unlimited long distance if you are in the US).  I had my surgery 12 years ago so I have been living with this for a long time.  I have a wonderful life and family (I had 3 kids after I had surgery).  I have a blog if you would like to see what life is like after an AN (although I just recently had another surgery & had some complications so it talks a lot about that now but you could look back a few pages if you would like).  The address is at the bottom on my signature line.

Good lock on yur new jouney and know that we are here for you...
K

[leapyrtwins]

Hi, Newbie Sher and welcome 

I tuned in late today and it looks like everyone else gave you the advice I'd give you, but here are a few of my thoughts.

IMO the literature from the ANA is very valuable - contact them today if you haven't already.

As Sue said, at 2cm you probably don't want to watch and wait, but you should have the option of radiation (Gamma Knife or Cyber Knife) or surgery.  It's a personal choice you need to make after you've done your research.

Everyone here will be more than happy to answer your questions, tell you their experiences, and just support you in general.  Members will also be willing to recommend doctors who treat ANs - if you are interested, just tell us where you are located.

Being diagnosed with an AN is frightening, so take some time to digest the news - and try not to worry, you'll get through this.

Jan

[Jim Scott]

Hi, Sher:

All the best advice has already been offered (these 'AN folks' are great - and quick, too!) so I'll simply welcome you to the site and these forums and let you know that most of us have been where you are, today, and came through it. 

No one wants an AN diagnosis, but since you have an AN, we're glad you found us.  We'll try to help in whatever way we can, of course.  That's our mission here.  Remember, the bad news is that you have an Acoustic Neuroma.  The good news is that it's benign (non-cancerous) and treatable.  Stay positive. 

Jim

[lori67]

Hi Sher and welcome

I don't have anything new to add to the advice already given, but wanted to let you know that I'm glad you found us early on in your AN journey.  There's a lot of good information here that could only come from those that have been there, and we're all willing to help.

Let us know what questions you have and I'm sure someone here will be able to give you some answers or point you in the right direction to get some.

Good luck!
Lori

[Mary 117]

Hi Sher.
Welcome to the group.This first few days can be tough but ask and research all that you can and let us know what you need. Everyone here is great and has been through similiar worries. Hang in there!

Mary

[MaryBKAriz]

Hi Sher from AZ,

This is a great group and I am sorry you have the AN but we all help each other through so I am glad you found us. I am pre-treatment and feel confident now with my decisions. Give yourself time okay and do lotsa research. Keep in touch.

Cheering you on.

Take care,

Mary