new to the board, any advice helps.

[Clifton]

UPDATE:

Well my friends, it appears as if there was a misunderstanding because i called to verify the size of the tumor and i am now being told that it is "2 cm long and 1 cm into the canal". not quite sure what that means if someone can help me understand a little better.

Most of you are right about the panic and rush rush being my immediate response but apparently this has been around for awhile, just unnoticed so i assume i can safely do more research to decide how to remove it. Im guessing since its much larger than originally comprehended i have drastically less time to decide.

[Samantha n Adrian]

Clifton,

I’m sorry to welcome to our club, but I hope you find as much comfort with it as I did.  I was diagnosed on 7/9/07 with a 4cm AN.  You can read my thread http://anausa.org/forum/index.php?topic=3894.0 .

This website was amazing in the first few days of my diagnosis.  I gathered so much information that it was honestly a bit overwhelming, but I was glad to have it and felt better to have it than not.  One thing I learned…..DO YOUR HOMEWORK!!!  There are too many surgeons out there that are not AN experts.  AN is very specialized and the surgeon(s) must be experienced.  You are lucky, your AN is very small, you have options.  I do not, mine has to come out and quick.  I must, as many on this forum, sacrifice the hearing in my right ear (AN side).  About 3 months ago I started having facial issues.  This may just be due to the fact that the tumor is aggravating the facial nerve and I may not have issues post-op.  The surgeons won’t know until they actually get in there and see what the situation is.

If I can offer any advice, stay strong and don’t freak out.  I was lucky, I have an amazing amount of support from my girlfriend, Sam and an amazing amount of support from friends and family.  I have a meeting with Dr. Bartels http://www.tampabayhearing.com/PeopleBartels.aspx and Dr. van Loveren http://www.societyns.org/society/bio.asp?MemberID=176 in Tampa, FL on the 15th of this month and a tentative surgery date on 9/6/07.  I have not had surgery yet so I can only offer you pre-op advice.  Do not feel stupid by asking “repetitiveâ€? questions.  I did often and everyone was very supportive.  Also, ask the doctors you meet questions…..A LOT of questions.  Write them down and take them with you so you won’t forget.  You will get on many tangents with doctors and you want to stay focused and keep your questions organized.  Do not hesitate to ask me or any of the wonderful people on this forum many questions.

Best of luck!

Adrian

[Captain Deb]

Clifton,
Glad you called to verify the size, it's unlikely an AN at 2 mm would cause any symptoms, but you never know. And, I may get my butt kicked for this but do NOT let someone who only "does" 12 AN surgeries per year talk you into letting him perform one on you! That is just not enough. It is definitely worth travelling to a center of excellence to treat this sucker, whether you choose surgery or radiation as you are within the limits for a non-invasive procedure. Keep us posted. The folks here are GREAT! By the way--get a CD or copies of your MRI films and also the radiologists report and look up some of the terminology on an online medical dictionary.  You can also get free educational meterials from the ANA--just click on the logo in the upper right hand corner of this page and find the link and fill out the forms.
About the 2cm long and 1 cm into the canal thing--ANs start on the nerve as it travels through the inner ear canal and sometimes they poke out into your "brain-pan." Boy are THOSE layman's terms! There are good images on the ANA site.

Be Well , Sail On and Don't Worry,

Capt Deb