Newby from PA

[solady]

Hi Friends and Information Givers,  At least I view you as such.  Diagnosed in Oct. 2008, I have been reading posts from this site as well as gathering information from other sources (hospitals) online.  It is wondering that not too many of the "gray foxes" (over 60 group) post their experiences.  In the literature I have been reading, it seems to be noted that AN's generally occur from the 20's to 50's.  Could I be the exception to rule? I have a 1.6 cm AN in R ear with 65% loss hearing (give my local ENT credit in ordering MRI with contrast) as I thought it was only the result of family genes and age that was attributing to loss.  Woo! what a rude awakening!  Now, begins the search for and making decision, hopefully, the correct one for me.  This site has been helpful, and I took the plunge to post--something I usually do not do.  Finding it very interesting that there does not seem to be much posted good/bad with regard to the hospitals in PA and MD.  I am scheduled for consults with Dr. Tamargo, and Kleinberg at John's Hopkins in March to hear their treatment evaluation, etc.  Given the odds of genitic longevity (mother is 98, soon 99) and that I am kicking around with no/little other problems, I am possibility considering surgery over radio surgery, however, will not consider W&W.  Thoughts are to arrest this little booger before it invades my active live.  Believe that Kim (poster) is having/had her retroseigmoid done there.  Wishing her well with good outcome. 
Nancy

[Sam Rush]

I was 61 at time of diagnosis.  Did extremely well w/ surgery. Good luck w/ your decision.

[suboo73]

Hi Nancy - sorry you had to join this club, but you already have found out how wonderful the group is and how much information is available here!  I had consults with Drs. Tamagaro and Dr. Kleinberg - seeing them both in one day was a lot of information to take in, but i didn't want to make a second road trip to John Hopkins.  (Good luck with your visits!)
I have not made a decision on my treatment at this point, so i am in W & W.
Have you read any posts by Bigsister? - She IS my big sister and has an AN. [SHe was diagnosed before me.]
She has consulted with Drs. Bigelow and Judy at the Unv. of Pennsylvania - if you want, you could send her a PM (Personal Message) and i am sure she will respond.

I posted under the AN Community for Kim (Zinger 1905) - she has her own blog so you can read about her 'Adventures with Manny.'  If you cannot find it the blog, let me know.

Take care and please keep us posted!

Sincerely,
Sue (aka Suboo)

[Kaybo]

Hi Nancy & Welcome!
I always heard that it is most common in 30-60 year olds - I was 25 and mine was "huge."  I am from Texas, but I had some reconstructive surgery this last spring at JH & was VERY impressed!  It was because of my AN (my face is paralyzed - surgery 13 years ago), but I didn't have any of the AN doctors.  I used a plastics guy & LOVED him!!  If you ever need any of that I would HIGHLY recommend him!!  Good luck with your continued research - let me know if I can help you in any way.

K  

[Jim Scott]

Hello - and welcome, Nancy:

I'm in Connecticut and can't offer any information on hospitals/doctors in your area.  However, I can tell you that I was 63 years old when I received my AN diagnosis in May, 2006.  Less than a month later, I underwent retrosigmoid approach surgery to reduce the size of my 4.5 cm AN.  90 days later, as planned, I underwent 26 separate FSR (fractionated stereotactic radiosurgery)'treatments' intended to destroy the remaining tumor's DNA.  Both the surgery and radiation were successful.  I had only very minor after-effects from the surgery and none whatsoever from the FSR.  Today, 32 months later, I'm pretty much back to the life I had prior to surgery.  My last MRI (August, 2008) showed tumor necrosis (cell death) as well as slight shrinkage. Unfortunately, the AN had grown so large prior to my diagnosis that my hearing nerve was irreparably damaged.  I'm SSD (Single-Sided Deaf)  in my left ear.  The good news is that my right ear works very well and of course, there are  BAHA (Bone Anchored Hearing Aids) available, should I ever decide that I want one.  As far as I can tell, my age was never an issue in my treatment because my doctor never mentioned it.   

I'm always pleased when a newly-diagnosed AN patient decides to 'sign up' and post.  I'm also glad to know that the site and these forums have been helpful to you.  I trust that will continue to be the case.  Please consider us a resource and visit as often as you feel you need to.  We want to help. 

Jim

[JerseyGirl2]

Hi, Nancy,

I've sent you a PM (personal message), and I agree with Jim. If you're in good health, age shouldn't necessarily be an issue. There are at least a few of us on this forum who don't think the 50s and 60s are over the hill!

Catherine (JerseyGirl 2)

[Pooter]

I, too, am in Texas and just wanted to welcome you to the forum.  I have family in Sarvar, PA and have been all over that area with them.  I'm with the others that as long as you are otherwise pretty healthy, age shouldn't factor in to whatever decision you make.  Your decision should be made based on your tumor and it's location, the size, and what you feel comfortable with.

Regards,
Brian

[wendysig]

Hi Nancy,

Sorry I'm late in coming to this thread.  I'm from New York so I'm not familiar with any docs in your area, just wanted to welcome you.  I'm sorry to hear you have an AN, but this is the place to be since you do.  You won't find a nicer group of people who have gone through and are going through basically the same things as you.  I also think you will find this place a wonderful source of information and compassion, but you already know that.   I just thought I'd add my two cents worth.  I have to go along with what everyone else has said regarding treatment -- if you are in otherwise good health I would think surgery is a viable option for you, should you decide that is what you want to do.  Whichever treatment choice you make, we will be here to support you however we can.

Best wishes,
Wendy

[Keeping Up]

I read a ton of research - most papers indicate the median age is 55 (or so) with a common range of 30-80 - so I would say you are pretty much average!!!

I think we have a disproportionate number of the less grey crowd (I am 37) participating on these boards because the younger crowd is more accustomed to chat rooms/facebook/on-line communities (I belong to 2 chat rooms with my kiddos birthdays - I have been with one for five years now!)

Welcome - hope your consults go well.  I am waiting because it is small (main reason) but I also don't have any time to deal with it right now with four little kiddos and I am sole income (thanks tanking economy!).  I will see what my 6 month follow-up MRI in May shows.  In the meantime, I fret about a lot of stuff and I research AN stuff ... that is when I have time.

Ann

[elderbirds]

Hi Nancy,
I had retrosigmoid surgery at Hopkins in April. Had great experience (as well as could be expected with AN surgery).  Please feel free to PM me with any questions.
Hope

[Keri]

Hi,
January 29, 2009 I had my translab at the University of MD in Baltimore with Dr. Eisenman. There's another person (I think "ravenshade") who's surgery was done by Dr. Eisenman as well.

I wish you well.

Keri

[Kim Zingale]

Hi Nancy,

I had retrosigmoid surgery at Johns Hopkins two weeks ago with Dr. Tamargo. Let me know if you have any questions.

Kim

[DE TOM]

Nancy,

I had surgery for AN in May 2008 at Johns Hopkins Hospital.  I used Dr Tamargo and Dr Niparko.  I would be very happy in discussing my procedure, hospital stay, and recovery afterwards.  I also had the BAHA Devino procedure in September and received it in December.  My email is located under my name, or you can PM me.

Best Wishes.

Tom

* moderator note: Tom, we can't show email addresses directly in posts, for anti-spam reasons. Members can use the icons under your name to contact you. Thanks. *

[solady]

Hi Zinger, Glad to hear that you are doing fine after your surgery.  I am still on fence as to which way to go--surgery or nuke.  Each day I seem to be waving one way or other.  Much will ride upon what the dr. appointments in Monday resolve.  Hope, each of the dr. will be up front with final outcome expectations as well as perfectly candid with each procedure.  Being a very detailed personality, I tend to expect that everything in laid on line.  Elderly persons sometimes are given only candy not meat, because doctors think we are too out of it to understand.  Not this chickie.  With all the reading I have been doing, I think I can comprehend whatever is said, hope I have time to ask questions.  Trying to condense questions into factual, to the point. 

Interestingly, several more of JH's clients are coming forth.  May be picking your brains--pun--for information later.  Did you all know that the support group of MD will be having meeting March 7 (details given on ANA site under support meetings).  Topic to be vestibular problems, etc.  Hope you can attend.

Nancy

[Sue]

Hi Nancy,

Gee, can I be a "Grey Vixen", instead of a "Grey Fox"?   

Diagnosed right after my 60th birthday.  It'd been growing though, for 15 years or so, since mine AN was at 2 cm.  Anyway, I had  GK and I'm still hanging in there.  Symptoms persist, but that's just par for the course with some of us. 

Sue in Vancouver USA