New to ANA

[sealsu]

Hey!  Wow, I've never posted anything in my life on the internet but now I'm realizing I'm not technically savvy what so ever since it took me about 10 minutes to figure out how to post something on this site.  And I work for a technology company.   :(I got diagnosed a little over a week ago.  I went to my ENT to meet with her and didn't realize it was bad till I googled Acoustic Neuroma the next morning when I got to work. My boyfriend and I were meeting friends right after my appointment to go to the Sounders game so I didn't even have time to think about it till I got to work at 7am the next morning.  It totally freaked me out when I read what it was and all the options.    My tumor is really small but I'm so young and fortunate my ear reacted the way it did because I've heard some really bad stories.  I guess my big question is what are some of the things that have happened after surgery for everyone.  I'm a runner and haven't been able to run over a mile in the last week because of dizziness but does the dizziness go away after a couple months post surgery?  I've read the facial paralysis usually comes back but that scares me a little too.  What is the probability of the nerve being damaged?  When my boyfriend and I went to meet with the neurotolgy Dr my ENT referred me to it was hard to get probabilities from her.  It scared me because she wouldn't give us even how many surgeries she did in a year. She said sometimes a couple a month.    From what we've both read I need to find the best Dr to perform the surgery so not hearing probabilities really scared both of us.  I have an appointment with Dr.  Backous at Virginia Mason to see what he says but now my dad and my brothers are talking about the House Clinic and some clinics closer to where I'm from Louisiana.   I've got a wedding in April for my best friend and I really don't want to have trouble walking as a bridesmaid.  Just scared so I'm trying to get some advise on what to expect and maybe who are the best Drs to go see.  I would love to stay in Seattle but understand you need to see the best Drs.  I flew to Houston for a conference today and read the papers Dr. Backous nurse gave me and the idea of surgery scared me.  Reading about all this is just way too much.  How does everyone do it and stay focused at work? 

I guess I just want to hear how other people with small size tumors post operation did?  Were you able to do the same things as before after a couple months? 
Thanks
LB

[leapyrtwins]

Hi, LB.

Your AN is small.  Have you consulted with any doctors about radiation?  either Gamma Knife of Cyber Knife?

I chose surgery myself, and did very well, but my AN was a lot larger than yours.

There are several forumites who are runners - both before and after their surgeries - your balance will adjust. 

You should contact the ANA and ask for their informational brochures; you will find them very helpful.

As for House, it's a great place, but there are other equally great places to have AN treatment so don't hesitate to look into doctors closer to home.  I had my surgery locally (in Illinois) and couldn't have asked for a better outcome.

Best,

Jan

[sgerrard]

Reading about all this is just way too much.  How does everyone do it and stay focused at work? 

Breathing will help.

This is not an emergency situation. You can take some time over the coming weeks. and even months, to look into several places where you might have surgery. You could also look into radiation treatment as a possibility, as Jan suggested. You can also take a day off and think about something else now and then.

You do have a small tumor, and generally speaking people with small tumors do very well. In typical cases you will regain enough balance function to do most things within a couple of months. One woman on the forum has even run in an Ironman competition just a few months after surgery. You also have a good chance of avoiding any facial nerve issues, especially if you get treatment from a doctor who has experience with acoustic neuromas.

So, LB, welcome to the forum. Have a seat and relax for a minute. You will be okay.

Steve

[epodjn]

It's hard to stay focused, that's for sure. It seems like your mind is so full of all this new and scary info that it's hard to function. But it gets better, much better!!! Give yourself time and permission to just space out. Your mind needs time to adjust to what is happening. Like Steve said, there is no need to hurry. Take your time making decisions. You will be fine. My tumor was a lot bigger than yours. They had to cut my facial nerve to get it out, but I doing great. You will be fine!!!

[Debbi]

Hi There & welcome!

As others have already said, your AN is small enough that radiation (cyber or gamma knife) may be a very good option for you.  You do have time on your side, so take your time to do your research and talk to various doctors.  Keep in mind that surgeons usually want to cut; while radiologists want to "radiate".  I didn't have a choice because of size/location, but i would definitely have considered radiation had that option been available to me.

My opinion is that, whatever treatment you choose, you seek out a doctor who has significant experience with this specific type of tumor.  I wanted a team that did at least 50 a year, but that was my personal criteria.  I also asked every surgeon I met with what their stats were for this surgery - how many a month/year, percentages of complications.  While every patient is different, I felt more comfortable at least knowing what my surgeons general stats were. 

You've found a great place to get support, ask questions, vent if you need it - everyone here is either going through the same process, or has gone through it - and we're happy to share.  Take some deep breaths and ask as many questions as you need.  And, don't be afraid to take a big list of questions to any doctors you meet with, too! 

Debbi - 18 months post op

[lawmama]

Hi LB,

I'm pretty new here myself.  I'm sorry about your diagnosis, but you are right that yours is still small so that is the good news.  You have several options at this stage.  I would suggest doing a lot of research.  Also, let me warn you that you will find a lot of "horror stories" online about bad outcomes with all treatment options.  While these do happen and I think it is good to be realistic about the risks, make sure you are reading some success stories too.  Most people go on to have very healthy, normal lives.  If you start feeling overwhelmed, there are many of us here that are willing to listen or talk.

Good luck and I'm happy to meet you.

Lyn

[Nickittynic]

Hello and welcome!

Take a deep breath! It will all be okay. Don't feel you need to (or should) rush into anything right this moment. Luckily your tumor is small and you have a lot of options! I didn't really have a choice of treatment options because of the size and location of my tumor, but I still wish I had visited/consulted with more doctors anyway (my husband says it's just because I can never be happy with a decision I make  ). With the size of your tumor, you have a good chance that your facial nerve will be just fine. Even with mine, the facial paralysis I have should be temporary. And honestly, if your hearing is effected (which it might not be!), it's not that huge of a deal. Dizziness happens but there is therapy for it and most people get significantly better. As for the wedding, you'll cross that bridge when you get to it, but more than likely things will be fine!
If you talk to a Dr that doesn't seem to answer your questions to your liking, that's not the Dr for you!

Feel free to PM me or check out my "Tumor Blog" (buginthebrain.blogspot.com) if you want to!

[CHD63]

Welcome, LB .....

In addition to taking a deep breath, let it all out very slowly, as well.     It is so normal to begin hyperventilating when you are first diagnosed ..... how well I can remember holding my breath, afraid to breathe, when first hearing the diagnosis.

As the others have already said, you have time to weigh your options.  The really important thing is to find the most experienced medical professionals you can ...... and there are many now throughout the country so no need to travel thousands of miles away from family, unless you want to do that.  Do your research (taking breathers frequently!) and then at some point in time, you will know what is right for you.  This is your personal decision, no one should tell you you have to do just one certain thing.

As for being able to do the same things after surgery ..... this is a very individual thing, depending upon the severity of your symptoms beforehand, location & size of tumor at treatment, how well you respond to treatment (or post-op recovery), etc.  We have had some very determined people on the Forum who have done amazing things relatively quickly post-op:  paddleboarding, kayaking, marathon running, etc.  It sounds like you are physically very active so you will probably have the motivation to do extremely well post-treatment.

Keep in touch and keep asking away!

Clarice

[Jim Scott]

Hello and welcome, LB ~

I won't reiterate what everyone that posted ahead of me has stated but I will endorse their advice to take a deep breath.  Then determine to seek out the most experienced, qualified doctor available because that AN experience can make a huge difference in outcome.  Many of our members are younger and go back to engaging in fairly strenuous physical activities a few months after surgery or radiation. As has been noted, your AN is relatively small and that gives you options as well as time, both valuable commodities that will serve you well as you move forward. 

We're all AN 'veterans' here (in one way or another) and our members are eager to answer whatever questions they can as well as offer advice and their wholehearted support as you deal with this unexpected invader.  Fortunately, although an acoustic neuroma can be problematic, they are almost always benign and eminently treatable.  Most AN patients do just fine, even when they have to deal with a few temporary setbacks.  Please don't allow your fears to control you.  Be courageous and determined to get through this episode and move on with your life, as we all do, eventually.  Know that you're not alone and many folks you've never met are thinking of you and praying for you as you approach this challenge.  Please visit here as often as you can so we can help and support you.

Jim  

[Pooter]

Hi LB and welcome to our little exclusive club!

I'm with others that mentioned that you should talk to some radiation doctors about doing radiation (if you don't "watch and wait" for some time).  With a tumor that small, you have PLENTY of time to do some research with doctors and determine the best course of action for you.

I'll be one of many who recommends highly my surgeons (for surgery, if that you end up going that route).

Calm down and take a deep breath.  It's a lot to take in at first.  Read my blog (address below).  I seriously thought I was going to die when I was first told.  I came to realize that wasn't going to happen.

Do your research.  Ask us all the questions that you have.  Make the best decision on treatment FOR YOU.

Regards,
Brian

[suboo73]

Hi LB!

I will add my welcome and hope that you will find some answers to your questions here!
Please take your time with research and doctor consults until YOU are satisfied. [it is alot to absorb all at once.]
I have been here over a year, in Watch & Wait, and still 'researching.' 

All the best and keep us posted on your progress.
Sincerely,

Sue

[LisaP]

Hi LB,

First of all welcome to our group, you need to take a deep breath, it is a shock and when I first found out a year and a half ago, I walked around in a fog for a while.

Take your time and research, don't rush into anything if you don't have to.  I have been watching and waiting for a while now.  I was dx back in March of 08.  Between my doctor and I we have both decided for now this was the best for me.

There are many options and only you and your doctor will know what is best for you.  Take care and best of luck.

LisaP

[Pembo]

I had a 4 cm tumor and was so dizzy I could hardly walk...after surgery I woke up not-dizzy. It was awesome. That said, the brain does take a bit (few weeks to a month or more) to adjust to just one balance nerve but I was amazed at how much better I felt.

As others have said, take your time, do your research and find the treatment that will be best for you.

and Welcome to our unique little piece of cyberworld..........

[jaylogs]

I will offer my welcome, sorry it had to come to this to be here, but you couldn't be in a better place.  You are at where I was about 2 months ago.  You'll more than likely have even more anxiety before you finally make a decision on what to do.  For me, that was the hardest part.  Now I am just waiting on my surgery date (Dec 9th) so of course that sets up a whole new list of anxieties, but nothing like it was before I decided to go this route.  Please continue to ask questions on here, NO question is a stupid question when it comes to these things. You have a great plethora of resources here to help you out, as they did for me! Again, welcome to our club!
Jay
PS: Wow, it's been a long time since I was able to use the word "plethora" in a sentence...lol 

[sgerrard]

PS: Wow, it's been a long time since I was able to use the word "plethora" in a sentence...lol 

Also lol.   

Steve