Just got diagnosed - help!

[marymomof3]

Hi.  I just got diagnosed with AN a few days ago.  I had never heard of this before, and the research I've done on the internet so far scares the heck out of me....  I'm 36 years old, my MRI results say that the tumor is 1.9cm.  I don't really know what this means... it this small, medium, large?  I live in NY and I'm meeting with a Neuro-otologist this Monday.  It's a bit overwhelming... what do I need to consider?  What should I ask this doctor?  Where can I find other physicians that specialize in this so I can better educate myself?  Anyone have any experience with this in NY that can offer some guidance?  I'd appreciate any help.   

[Joef]

First.. take a deep breath ... (we've all been there.. the first stage is panic!! )

search around the messages here for help and questions... (note to Phyll, do we need a sticky message of common first questions?)

1.9 cm ... thats 1.9 centimeters.. thats the width of the tumor... and I would call that a medium size...(1 inch = 2.5 centimeters)

most of us get several opinions... there are a lot of hospitals and doctors that you can mail the MRI's to and they will get you a free "estimate"  ... the key thing is to get experienced doctors for this... (thats the first question... how many  surgeries  have you done?)  all the major centers like NYC,Boston, LA .. have great doctors...

Where is NY are you? in the City?

[marymomof3]

Thanks for the reply.  I am definitely in a state of PANIC!!  and I feel like I have a lot to do to better educate myself.  Sometimes I still don't believe this-like it's just a bad joke.... or they made a mistake.

I live about 30 minutes outside of the city.  Are you familiar with any doctors there?  I'm scheduled to meet with Dr. Selesnick.

[ppearl214]

Hi Mary and welcome... I believe you also participate on the CK Patient support board or my memory fails me..    regardless, welcome.....

Joe is certainly right.... just take a deeeeeeep breath! We're all going to help as best as we can......  I believe there is talk on this discussion forum re: Dr. Selesnick. If you go to the top of the web page here and do a "search" for his name, I believe you will see historical posts about him. You can also check the "Physician" forum here for references.  Many of us are based in the Northeast so we can help....... Just hang tight and we're going to help....

Joe, good idea. I know KateBesserman (or was it Waserman... dang memory!) did a questions post a while back (I used her list of questions at my first AN dr appt after the MRI initially showed mine). We can bring the questions to the forefront and post if others feel it will be helpful... thanks for noting it!


Mary, I know the info on this board can seem overwhelming at times..... read what you feel you need to read... take a step back when you need to step back.. and take that deep breath. Remember, it's benign, it's treatable and most of all... we truly do understand what it is to be in your shoes.

Phyl

[jtd71465]

I live in NJ and had my surgery on January 10, 2007 with Dr.'s Golfinos and Roland out of NYU Medical Center.  Please send me an email and I will exchange my phone number so we can talk. 

Joe-

[fbarbera]

Hello there,

I am 35 years old and was diagnosed with a 2.6 cm AN last July.  I was treated with Cyberknife in August 2007 and I can tell you that you will be fine.  These first couple of weeks, as you get a handle on this diagnosis, are the worst. 

The main treatment options out there are surgery or radiation, and I found that was the toughest decision to make.  There are different radiation technologies to chose among as well, the most prevalent one being Gamma Knife (single dose).  Cyberknife is a more recent technology that has certain advantages, such as better hearing preservation rates.  I am sure you will hear and learn alot about these options in the next couple of weeks.  The great news is that all treatment options have extremely high success rates.  You also are fortunate (like me) in that because your tumor is relatively small, you will probably have all options available to you.

My main piece of advice is that you take your time and consult with multiple neurosurgeons before making any treatment decision.  Ideally, you should consult with neurosurgeons who are skilled and experienced in both surgical and radiation approaches to ANs.  I found that surgeons tend to be quite biased in favor of surgery and to discount the advantages of radiation, whereas doctors experienced in both radiation and surgery are more balanced about the advantages and disadvantages of each approach.

I am very happy to talk with you about my own process of researching treatment alternatives and coming to a treatment decision.  Please feel free to contact me directly any time.

Best,
Francesco

[Boppie]

Your tumor is medium.  Don't let it scare you.  We have all been where you are and it is quite impressive and scary to be told there is a tumor in your head.  The treatment options are varied and lots of good info is available here.  Take and breath!  You are going to be okay with this.

[candtlaw]

Definatly breathe and big big hugs.. You will be able to make it through this. I am not in NY but am a 34 year old Mom of 3........... my AN was 1cm and treated with CK... please email me if you need to talk. It will be ok........
grbgmn1@verizon.net

[Tumbleweed]

Unless your doctor is a neurosurgeon or radiation oncologist, they probably won't know too much detail about your options and you should save most of your questions for the doctors who might provide treatment (microsurgery or radiotherapy/radiosurgery). My otoneurologist told me that my tumor was huge and I needed to have surgery ASAP to have it removed. He was also against radiotherapy (using radiation to stop the tumor's growth). But the neurosurgeons and radiation oncologists I've since consulted have said my 1.9-cm tumor is medium size and can wait on treatment. They also all leaned toward radiotherapy. So talk with the most knowledgeable people you can -- those doctors who have had a ton of experience with treating vestibular schwannomas (AKA acoustic neuromas) -- before you start forming firm opinions and possibly scaring yourself. This forum is an excellent place to gain insight into your choices and will help give you peace of mind. Another fantastic source of info is http://www.anarchive.org/

The first week after diagnosis is by far the roughest. Rest assured you will come to terms with this shocking development in your life. After 2 or 3 weeks, you will probably be at peace with it and with your decision on what treatment you wish to have. I personally found that researching the heck out of it (what it is, what my options are, etc.) gave me peace of mind -- after the initial shock over the risks inherent to various forms of treatment. Knowledge is power.

One other thing to keep in mind is that you're still the same person you've been for the past several years. Nothing has changed except that you now know the cause of your symptoms. ANs grow at an average rate of 2 mm per year (although this can vary widely), so you've probably had your AN for many years. So there's no need to panic and rush into a decision. Take your time, weigh your options carefully, and you'll come out fine.

[mbnolde]

I was just diagnosed in early Dec. 2007 and the first couple weeks are the hardest as you try to come to terms with this startling development in your life!  But...as others have said....you DO come to terms with it...gathering information helps....coming on this forum definitely helps....and you find that you are NOT ALONE...as I thought I was since I had never known anyone with this diagnosis before!  WE HAVE ALL BEEN THERE!!!!

MB