Diagnosed 12/2

[amysga]

I've lurked for a few weeks while processing, well, really, while going nuts.  I am so grateful to everyone here for their invaluable information and compassion.  When those two words are first spoken and you hit the computer it is, to say the least, overwhelming.
The left ear tinnitus suddenly started 11/2008 and has continued.  Visit to ENT showed it was not wax accumulation which had happened before and that my ear was clear.  Hearing test was good.  Recheck 11/2009 with slight hearing loss, not significant. 
Then in the last few months occasional balance things, no dizziness, no nausea, no room spinning, simply the room or surrounding is tilting when I stand up, much like being on a boat.  Okay, maybe I'm standing up too quickly, I am getting older.  When the left side of my head felt like I had a cold and I didn't, sort of a fuzzy feeling, I thought maybe I've developed allergies.   And then I thought get back to the ENT and quit thinking.  11/18 was the first time I heard AN and the doctor was sure I didn't have one and ordered the MRI to rule it out.  Hearing test showed significant hearing loss left side.  I puttered around a little on the computer, didn't like what little I read and just stopped looking to wait for the MRI results.  MRI 11/30, CD sent with me to give to ENT - of course I looked at it.  Little bit of learning and all that. There it was, just like the image I'd seen on some website.  Called the ENT whose nurse told me on the phone it was AN and I'd be referred to a neuro in Atlanta.  Saw him 12/7.  1 cm left side.  Of course, he's a surgeon and leans toward getting it out.  Gave me the 3 options and told me to decide and call him.  Absolutely no post op info.  He said hospital for a week and then you can go back to work in a month.   Upside I now understand is the size, but I don't know where it is located.  Thinking I'll call Emory and see if I can see Dr. Mattox, who of couse is a surgeon, but maybe I need to go to him with a little more knowledge than I had with the first one.  I would love some personal input on a GK or CK specialist in the southeast US.   So did I run on or what?  Thanks for reading.

Amy

[Mickey]

Hi Amy! I have the same demension as your AN and am now 62. I was diognosed over three years ago and have been stable ever since W+W. Basicly what I`m trying to say is that you have time with ANs to do your homework and come up with a plan of action which will suit yourself. Your options are many with many doctors to choose from with all positive results possible. Take your time and explore whats out there and be led by your inner self to come up with your choice. Best wishes, Mickey

[moe]

Hi Amy,
No you didn't "run on!" Perfectly normal response. So sorry you received this diagnoses especially in the "cheery, carefree" month of Dec.

The first reaction of disbelief/freaking out will calm down once you start" talking"  to people on the forum. Your tumor is small so that is good. You have those different options, and there is NO rush.

Those vague symptoms are very common until you finally get the MRI. So you know it is there, and that  is good, so it can be addressed (mine was so slow growing, I ignored it for years and years).

Deep breath, enjoy the holidays. It is not going anywhere, and will not start to grow rapidly now that you know it is there! Sometimes the symptoms seem to just get worse when people find out about the AN.

You may even be able to wait and watch, depending on your symptoms.

So welcome to the exclusive little club. We laugh, cry, lament, and count our blessings too.
Maureen

[sunfish]

Familiar story!  Sorry you had to join us.  I had a 1.4 cm AN, and had  CK at Roper Hospital, Charleston, SC.  Lots and lots of other options, though, for radiosurgery for a tumor this size.  Go on www.cyberknife.com and find the locations.  Maybe one in Atlanta?  I've had very similar symptoms to yours.  Keep us posted!

[TJ]

Amy,

As all have responded to you take your time.  Get all the information that you need to make the correct decision for YOU, not your doctors.  I am in your age group and was in W&W for 3 years with a 1CM AN before I decided to have CK.  I had it 3 weeks ago, and after all the processing of information I thought that was the best option for me as the AN was still kinda small.

Get your information make a smart decision, best of luck

TJ

[kiwi]

Hi Amy

I'm sorry to hear of your diagnosis, I received the same news as you on the same day a year previous and it made for a terrible Xmas for me and my family.  However yours is smaller so as others have said take your time and get the facts before you decide.

Jacqui

[CHD63]

Hi Amy and welcome to this forum!

So glad you "ran on"    ..... it helps the rest of us to understand your situation better.  As the others have said, ANs are almost always benign and slow-growing so there is usually not a big rush to make a treatment decision.  At 1cm, you should have all of the treatment options, unless it is located in a place that changes that or your symptoms are changing rapidly.  You are doing the right thing to research all of your options and search for the most experienced physicians in treating specifically ANs.

In the meantime, if you have not already done so, send for the ANA free materials.  See http://anausa.org/sc/apps/forms/forms.cgi  Many of your questions might be answered and the information is very reassuring.

I had surgery but a friend had very successful GK at Wake Forest Medical Center in Winston-Salem, NC ..... a highly rated center for AN treatment, via GK.  Stanford University has an outstanding CK facility, as does Pittsburgh.  If I remember correctly, Stanford will evaluate your MRI free of charge for their recommendation.

Unless your symptoms have suddenly changed recently, my recommendation would be to enjoy the holidays and then pursue your options ...... I am well aware that may be the proverbial "easier said than done."  It is important to reduce your stress as much as possible so I hope you can relax a bit these next few weeks.

Many thoughts and prayers.

Clarice

[suboo73]

Hi Amy,

I too, will extend a welcome - the folks here are FANTASTIC - you have come to the right place!
As someone also in your age group, I can tell you that W & W is an option. 
(I never thought i would be here, then had tests run right after my sister was diagnosed in summer 2008.)

You have received a lot of information from others, so i will close here.
Just know that you have time to make your decision, whatever it may be.

Thinking of you, and continued prayers to you and your family.

Sincerely,
Sue

[Jim Scott]

Hi, Amy ~

I wanted to extend my own welcome to you but I won't waste your time repeating the good advice already posted.  You have options, which can sometimes be a blessing or a curse.  I had no option other than surgery (4.5 AN) so I was spared that difficult decision. My surgery went well with no complications.  My follow-up FSR also went well and today, four years later, I'm good.  Well, except for being four years older, which is not fun when you're in your sixties...but that's another story.  Feel free to ask questions and/or just rant, whenever you need to.  We understand your concerns and emotions because we've 'been there'. 

Jim

[kraynok2]

Welcome Amy!  I am glad you found us.  This forum and the ANA website as a whole was invaluable to me.  As others have said, this is a shock when you first hear it.  Try to relax and enjoy the Christmas season.  Take your time and do a lot of research.  It pays off.  Go with what feels right for you.  After about 100 hours of research, I knew that I wanted the tumor out of my head, so my mind was made up before I consulted with surgeons.  I liked the ENT that knew this was an acoustic neuroma.  I've asking my regular ENT if we could not test my left ear for the past five years and kept saying nothing could be done.  I have debated getting another opinion for 2 years and am sure glad I finally did.  I did not like the first surgeon recommended to me, so I kept researching until I found someone.  I had my surgery in November and am very pleased that all my research paid off.  So don't rush in to anything and go with what you feel is best for you.
Sandy

[Tumbleweed]

Stanford University has an outstanding CK facility, as does Pittsburgh.  If I remember correctly, Stanford will evaluate your MRI free of charge for their recommendation.

True. Email Dr. Steven Chang at Stanford for a free evaluation: sdchang@stanford.edu. Dr. Chang treats around 50 ANs per year (and several hundred other brain tumors each year). He is both a neurosurgeon and a CK specialist, and he treats half of the tumors he sees with CK and the other half with microsurgery, so you will receive an unbiased opinion on radiosurgery vs microsurgery for your AN. I would venture an educated guess that, considering your AN's size and your lack of facial-nerve impairment, he is likely to recommend CK over microsurgery, but I could easily be wrong.

I was diagnosed the day after Thanksgiving, in 2007. Happy Thanksgiving?  Sometimes the timing can seem like a cruel joke.

Your tumor is small, though, and your symptoms could be much worse. I'm not trying to minimize your predicament, however, as we've all been there and know how difficult it is. I'm just trying to offer a ray of hope and optimism. Not blindly, but for good reason. Do your research and you'll come out of this just fine. Considering the AN is what it is, we're glad you have joined us.

Best wishes,
TW

[amysga]

Thank you to everyone who took your time to answer and offer encouragement.  I am on a roller coaster of wanting to learn all I can and at the same time fearing that knowledge.  And the kicker is that from what I can gather, there is absolutely no way to predict the outcome after treatment.  Ironically and thankfully, the infrequent balance issues seem to have taken a vacation.  I've spent a lot of time walking and jogging in the woods with my dog.  I have an appointment with Dr. Mattox at Emory in January.  Thanks again for your kind and caring words.

Amy

[Vivian B.]

Hi Amy,

I wanted to welcome you to the forum and tell you that your symptoms are all too famliar and you are not alone.

Vivian

[Lizard]

I just wanted to say hi and welcome you to the forum, were here for you and you will get through this.
Hang in there!
Liz
 

[sarahinPA]

Hi Amy,
I am sorry to hear of your diagnosis, but rest assured, you have come to the right place for support. I also was diagnosed during the month of december. December 21, 2008 at the age of 23 Merry christmas to me, huh? I am now 2 years post surgery and have come back to the forum today because of an increase in some symptoms.

My AN was 2.2cm right side, and I, like you, had minimal symptoms, numbness in my face was my indication that something was wrong. after ignoring it for nearly 6 months. I choose Gamma Knife, due to the least amount of side effects and quicker revovery time. I was treated at UPMC in Pittsburgh, Pa by Dr. Douglas Kondziolka; he specializes in GK for AN and is currently on the ANA board. If a trip to PA is possibel I would suggest him, as he has a wonderful team! They have answered all of my questions and concerns since surgery, and call me back within 24 hours. They have been so helpful and i appriciate all they have done. Dr. K. was able to schedule me for surgery 2 days after my initial visit.

As most people have given you suggestions, take your time and make an informed decision. I suggest visiting with a surgeon, GK and CK treatment team to make the best decision for you. We can all provide support, but treatment options are different for all of us.


Good Luck, and God Bless.