Expecting to have AN confirmed

[ganto]

Hi everyone,
I just found this forum and I am delighted that I am able to get current info on AN.  So much of the internet data is dated that it is difficult to determine ground truth.  Here is my situation.  For the past couple of months I have experienced dizziness, fullness in the ears and had a very bad bout of vertigo that required an emegency visit to the hospital.  Yesterday my ENT called and said that I did have a "very tiny" tumour but because the MRI was done w/o contrast he asked that I schedule another one.  I fully expect an AN diagnosis to result.  I am in the process of scheduling another MRI.  I live near Philadelphia ,PA so it is refreshing to hear that there are experts in AN treatment near here.  I am just shy of my 64th birthday, have hearing in both ears and do not have a problem with balance.  I've had an ABR that was normal and a VNG that indicated that there was a vistibular disorder.  I expect that I will become a regular on this forum as I wade through the decision making process regarding the treatment options.

Thanks to all of you who take the time to post such valuable info to those of us that are just embarking on an unknown and very intimidating journey.

Joe

[Joef]

Welcome 
  Yep this is THE place for AN info , I hope the new MRI shows that is tiny or not there! Link to check out are:

Hospital that specializes in AN surgery (only)
http://www.houseearclinic.com/index.htm

Good AN info
http://www.anarchive.org/

Good Ear  info
http://www.vestibular.org/

Accuray (mfg of Cyberknife):
http://www.accuray.com/

Cyberknife Patient Support:
http://www.cyberknifesupport.org/forum/default.aspx

Gamma Knife Info:
http://www.radiologyinfo.org/content/therapy/gamma_knife.htm

Proton Radio:
http://neurosurgery.mgh.harvard.edu/ProtonBeam/hist-pb.htm

Novalis FSR:
http://www.novalis-surgery.com

[pattibobatti]

Hi Ganto,

Sorry to hear about your tumor.  You do seem very calm about this!!! That's good though!
I'm very happy that you found this web-site.  Get ready for a lot of reading!!!!! I remember howa happy I was when I found this site too.  And I did read everything.  You will learn so much and also find many caring people. 

Do you have family near-by?  I hope that you do.  But if not, consider us kind of a family..In some ways we are even better than a family because we know EXACTLY how you must feel.  Take good advantage of us !!!!!

Welcome to the web-site and hope you are having a good day

Pattibobatti

[Obita]

Hi Joe:

The last few months for you sounds EXACTLY like the three months prior to my diagnosis.  Welcome to the forum.  If you are going to have an Acoustic Neuroma, a tiny one is what you want.  (mine was not tiny, darn it)

Good luck in your research, get that MRI w) contrast and let us know when you get the results. 

Kathy

[ganto]

Hi Kathy,
Thanks for the welcome!  Just curious.  What constitutes a small acoustic neuroma anmd why is small beneficial?  Is it because it makes the radiation treatment more attractive?  Or is it because the surgery has a higher probability of an outcome that preserves quality of life?

Joe

[HeadCase2]

Joe,
  Small (less than 1.0 CM) is good because, depending on just where it is, it is less likely to have compromised nearby nerves.  Larger ANs can also begin to displace the brain stem and cerebellum.
Regards,
 Rob

[Sue]

Hi and welcome to our club!  I'll add my 2 cents worth in also. Large AN's means you won't have a choice on procedure.  There are several people on this forum who had AN's that were practically in the "life-threatening" catagory - and surgery was immediate and swift!  Nobody wants that! Well, they want the surgery, but not the LARGE tumor!  With a small one you will have time to see what option is best for you and your circumstance. But no matter the size, it seems that everybody gets something unpleasant from this neuroma that we have.  I think almost everybody has some degree of tinnitus and almost everybody has some level of hearing loss.  Boy, it's sure not something that I saw on the radar!  I'd never heard of acoustic neuroma, and now I have one. However, I was glad that the symptoms I had finally had a name and a procedure to stop it from going any further. I had Gamma Knife last April.  Good luck on your new journey with an AN, and I'm glad you found this forum.  There are quite a few very knowledgable people on board here, and they will do their best to help you in any way that they can.  So, welcome to our club and let us know what's going on.

Sue
Vancouver

[Gennysmom]

My two cents are really supporting what Rob and Sue already said.  Mine was over 3 cm, so surgery was my only choice.  With it being "tiny" you have lots of choices and plenty of time to decide what you want to do with it.  We are a huge family here, have a collective wealth of information...and of course, they do say, if you have to have a brain tumor, an AN is the kind to have...so welcome to our club! 

[Obita]

Hi Joe:

Like the previous posts say,  small is good.  You may be able to wait and watch it.  Maybe it won't grow a whole lot each year.  The usually grow very slow.  Usually.  I was not a candidate for radiation because mine was just touching my brainstem.  My tumor was 2.5cm.  About the size of a dime I think.

The smaller the tumor the easier to treat.  Some people just want it out, some opt for radiation.  There are tons of posts here for both.  Lots to read and lots to absorb.  Whatever you decide, find Drs. that treat many ANs per year.  When I had mine out my surgeons had done over 500 - now a patient of theirs told me they are up over 800.  The more experienced the Drs. and the smaller the tumor, the better the outcome.

Sounds like we will be seeing lots of you.  Good luck Joe,  Kathy

[wind6]

Hi Joe, Just wanted to add a welcome to the board. This is a wonderful place. Full of information and support for almost anything possible need when its about AN's. Often many other needs are met here too...at least for me.
Hopefully you will get an all clear but if not then I agree....small is good news for all the above stated reasons.   Sherry

[Desilu]

Hi Joe,

I have to agree with everyone, small is good.  This gives you time to make an educated decision.  I was able to be on the wait and watch mode for 5 years before my AN started to grow. Then it was time to get it out!  I took the surgery route but there are many who have had radiation and have had good outcomes also. You do have options so take your time and research as much as you can.  This website is a wealth of information. Everyone here is more than willing to help you on your AN journey in anyway they can. You have one chance to do it right, so please make sure that you have peace about your decision whichever route you take. I wish you the best.  Ann

[Chemical]

Hi Joe,

Wow, you are lucky to have this group. I had my 2.2cm NA removed in 1996. If something like this board existed, I didn't know about it. I was all alone and had no one who had been there, done that to discuss my problem with. Today I found this group and already I feel better. I am not alone now. 

You seem to have a great attitude and that helps tremendously. I hope you have someone close who will undertand, but also lean on this group; they are awesome. I have read enough today to know this is a wonderful group of knowledgeable friends on this site. I am about your age and I had my surgery 10 years ago and life is just great now. Best of luck and if they confirm NA, I hope it is no more than 1 cm. Good luck and bless you.  Jane -- Atlanta area.

[cbarker]

Joe,

Small is good.  Mine is less than 1cm.  I have been advised by an excellent surgeon to get another MRI in 6 months to see if it grows.  He isn't recommending surgery now as I'm nerve deaf in one ear, and the AN is in the other ear.  That is my bad luck.  I'm in my mid-30's and could possibly never need it removed if it just sits there and doesn't do anything.  I'm going to do more reading on here and other places online about radiation.  My ENT and the surgeon are not fans of it.  The tinnitus in my non-AN ear is absolutely the worst, but I have not had any issues to speak of in the AN ear.  Everyone on this forum says to research research research, and that is the best advice.  Good luck.  cbarker       

[Static]

Joe,
Like everyone else said, small is good, nothing is best!  That being said, I also live outside Philly and had surgery at Jefferson to remove a 3.5cm pressing on the brainstem and needing removal ASAP.  U of PA also has a very good reputation from what I've heard.  I chose Jeff because one of my better doctors referred me there and I was satisfied with what I found.  If you want more info on Jeff, let me know and I'll get back to ya!
~Karen