Newly diagnosed Newbie

[sparrow1]

I just had an mri after two stints in the E.R. with terrible vertigo. I have been instructed to first see a ear, nose and throat doctor which I am hoping to get more information. I was able to contact my regular doctors nurse to have them tell me what size the tumor was and they said it was 2.1cm x 1.3 cm x 1.5 cm.  Is this considered a large tumor?  I have so many questions...I don't even know where to start.

[CHD63]

sparrow1 .....

Welcome to this forum of caring, supportive friends who have been through what you are going through right now.

I'm glad you found us, but sorry it took a tumor to look for us.  If you have not sent for the free ANA materials, please do so:  http://anausa.org/sc/apps/forms/forms.cgi  There is a wealth of information and access to much support there, as well.

Depending upon whom you ask, a 2.1 cm tumor is medium/large.  At that size you still have options for radiation or surgery.  The exact location of your tumor and your symptoms will determine how long you can safely wait for treatment.

On the ANA Home page you can also find a link for questions to ask physicians that many of us found helpful when researching our options.  Because ANs are relatively rare, it is important to seek the professionals who are the most experienced in treating specifically ANs as you can find ..... not just someone who sees an occasional AN.

Ask away with your questions.  That is what we are here for!

Many thoughts.  Clarice

[Kaybo]

sparrow1~
I only have a sec but I wanted to welcome you - I know this is probably NOT where you would like to be, but it is a GREAT place if you have an AN!

Ask away - we are ready for all those questions!

K   

[moe]

Hi Sparrow,
Welcome to the forum- ask away~ We have been in your shoes.
Good advice from Clarice..We can give our own personal experiences and biases , and we are happy to answer one question at a time if need be

/answer to question 1: as Clarice mentioned, med size, different options. Homework will be in order. NO rushing into anything unless your symptoms are debilitating.

This is a slow growing benign tumor that isn't going anywhere and is probably not making quantum leaps in its size right now. Though interesting, once people find out about the bugger, some find that the symptoms seem worse. That mind over matter thing. It is probably not getting much bigger....
Okay, next question?!
Maureen

[Jim Scott]

Hello and welcome, Sparrow ~

As always, we're sorry you've been saddled with an AN diagnosis but at least it's a benign tumor and very treatable.  In a sense you're fortunate because the size of your AN is relatively small (mine was 4.5 cm) and that usually gives you treatment options, primarily surgery or irradiation.  Of course only a doctor familiar with your case can present you with viable treatment options that may be best for you but I expect that at some point, assuming you have more than one option, you'll have to make a choice as to treatment because an ethical physician will not presume to make the choice for you, nor should he/she.  Obviously, you'll need to do your own research to familiarize yourself with what an acoustic neuroma is, how treatments work, what to expect, etc.  This website (aside from the discussion forums) offers a wealth of information and, as previously stated, as AN patients, pre and post-treatment, our members are eager to share their experiences and answer questions with practical answers (we're not doctors).  We're well aware that the initial AN diagnosis is usually daunting and that you may be feeling scared and confused at times but that will pass as you acquire knowledge, communicate with other AN patients here and generally accept and own the situation as you move toward resolving it, as you will.  Please feel free to post any question, any time.  We're 'open' 24/7 and if we can't give you a valid answer we'll try to steer you to someone or some place that can. 

Jim

[jaylogs]

Hello and Welcome Sparrow!!  I am sorry about you having to find this place, but you'll find TONS of info on here. Please feel free to ask questions or just vent, as so many of us on here have done! Try to get as many opinions as you can, and just know that when you ultimately make a decision on what you do, if it feels right it will be the right one! Take care and good luck!
Jay

[kathleen anna]

Hi Sparrow........welcome.  I am still in the recouperation stage...translab surgery Sept. 15th a Univ of Pennsylvania Hospital.   I also have lost all hearing in the left side, am still numb and off balance.  But, I do feel better as the weeks go by.  I just want to say to you that this forum has been a godsend for me.  I felt very confident and knowledgeable from  reading about all the wonderful people on here.  Since this is an emotional rollercoaster, its great to have people to ask questions to.  Please take advantage of all the experiences that we have all been through.  It truly does help.  Emotionally and physically.  And remember that no questions is "silly" !  Ask away....thats what we are here for.....

Hang in there.................Kathleen Anna

[sparrow1]

Thank you so much everyone!  I am sure I will be leaning on you all quite heavily in the next few weeks...months. I am terrified...trying to be strong but with so many questions. May I ask how many of you had conventional surgery versus gamma knife? What were the things that made you decide one way or the other? Thank you so much for taking the time to respond!

[EJTampa]

I had surgery rather than radiation.  I didn't have a large tumor, but I wanted to know my outcome right away.  Technology improves every day, but at the time, I didn't want to wait 2 years to see if I would lose this or lose that.  Coupled with not knowing the effect on the vestibular nerve, I chose surgery.  For me it worked out great.  That said, I see many here who could well provide an argument that they did better with radiation!  I know, I'm not helping!
 
I had a great outcome with surgery and do almost if not everything I did before surgery.  I had a great team in Tampa, Dr. Bartels and Dr. Danner, so that helped alot too.  I went home the day after my surgery. 
 
I had a job where I could afford to take some time off.  I think that's a big deciding factor for a lot of people.  If you can't get paid time off, perhaps radiation is a better option.  Everything else is so equal, it's a tough decision.  It was the hardest part of my whole journey!  Deciding!
 
Ernie

[Tumbleweed]

I am terrified...trying to be strong but with so many questions. May I ask how many of you had conventional surgery versus gamma knife? What were the things that made you decide one way or the other?

Hi, Sparrow1:

I don't believe this forum keeps a count of how many of us chose one treatment over another. But follow this link to a post (half-way down the page) in which I summarize the risks vs benefits for the different types of treatments for ANs:
http://anausa.org/forum/index.php?topic=6670.0

That should get you started in your research. If you have any other questions, please don't hesitate to ask.

Best wishes,
TW

[CHD63]

sparrow1 .....

Deciding upon treatment and then which doctor(s) to do it is one of the most stressful parts of this whole thing.  Once those two decisions are made many of us felt a sense of relief even before treatment.

As for knowing how many had surgery vs. radiation, in the end this is a very personal decision.  You need to continue what you are doing by researching, asking lots of questions, talking to several doctors, etc. ..... but when it comes down to it, YOU need to be the one to make the final decision ..... not doctors, not family, not friends.  It is your body and you need to do what you know in your own heart and mind is right for you.

I chose surgery, but only because radiation was not a good option for me because of the unusual rate of growth of my AN and my history of radiation exposure as a child.  But also, like Ernie, I just really wanted to have it out of there ..... but again, that was my personal feeling.  You will know what is best for you at some point in the journey.

Many thoughts and prayers.

Clarice

[leapyrtwins]

Hi, Sparrow and welcome to the Forum 

Since you asked, I had the option of radiation or surgery and ultimately chose surgery.  It worked out very well for me; I had a great outcome.  My only permanent side-effect is SSD (single-sided deafness) which I've learned to live with by having a BAHA implant.

Treatment choice is a very personal choice - you need to do what is best for YOU - and trying to decide is often the hardest part of the AN Journey.

I'm glad Clarice mentioned the ANA's literature.  It's very informative.  If you haven't requested it yet, you should.

I'm not sure how much experience the ENT you've been referred to has with ANs, but experience is crucial when choosing a doctor.  When I come from (Chicago area) ENTs don't treat ANs; neurotologists treat ANs.  If your ENT lacks experience with ANs, you might want to look for a neurotologist. 

Jan

[Vivian B.]

Hi there, the tumor is not considered large but mid range. Mine was about the same size when I was diagnosed. The more you read, the easier it will become, although overwhelming. Don't worry, you have the option of both treatments, radio and surgery, althought you will need a consult for both depending on location of the tumor as well. After you see the ENT, you will likely be referred to a Neuro. Your family doctor can also do the referral. Hang in there.


Vivian

[Mark241]

Welcome, I really didn't have a choice between the two by the time mine was discovered. I can say that I recovered fairly quickly from the surgery. Good luck sorry I couldnt help more.