New, scared, yet a bit relieved.

[ShoeGalBecky]

Hi. I just found out Friday that I have an AN. This came after being given the run around  for 1 1/2 years regarding my severe bouts with vertigo, which left me bedridden and unable to care for my son for weeks at a time. First, I was told it was benign positional vertigo, then labrynthitis, then Meniere's disease. When I complained of  a loud rushing and pulsating tinnitus in my right ear, I was told I was just hearing my pulse and that it was not connected to the vertigo episodes. I finally asked if there was any test to tell if it could be a tumor or a problem with a blood vessel in my head. The Doctor said that I could get an MRI but that he was CERTAIN that it would show nothing. I left the doctor's office that day feeling like a complete hypochondriac and like the doctor thought I was exaggerating  the whole situation. Sadly, I was actually a little relieved when the MRI showed an AN because at least then I wasn't making this whole thing up. Of course, this doctor does not handle AN's  and I am being referred to the University of Wisconsin to see a physician there. I am thankful that I found this website because I really do not much at all about AN's. I have an appointment at the UW hospital tomorrow and will find out more. I am checking this website to find out what type of questions I should ask at my appointment. If anyone has any advice regarding my first appointment, I would greatly appreciate it. Thanks much for listening to me and thanks for all the info that is on this site.

[macintosh]

As you are probably gleaning from this site, the most important thing to do is to make sure that the doctors you deal with give you thorough explanations of the pros and cons of all possible treatment options--surgery, radiosurgery, and watch and wait. Many of us encountered doctors who had a strong bias towards one particular method, and we had to overcome that in order to make our own decisions.

I chose to have radiosurgery (two weeks ago), and I have had no immediate side effects. I am very comfortable with my decision.

Some literature that helped me make that decision can be found at www.pubmed.gov. If you use the search string <acoustic neuroma radiosurgery>, the articles by Friedman, Sheehan and Pollock are peer-reviewed articles in top journals, and they speak directly to the question of choice of treatment. If you read these before your appointment, you will know exactly what the doctors are talking about.

Good luck with your case,

Mac

[Lorenzo]

HI,

Welcome, and yes, it does feel strangely good to finally know that one isn't iamgining it all! I know, I had the saem experience!!!!

Talk to the specialists, find out as much information as you can, take your time if you can, and then make a decision that suits you. You ahve to be comnfortable witht he chosen treatment option, choosing one over another is not just a case of what the doctors say. We're all here to answer your questions. In the meantime, makes sure you ask your doctor how much experience he has with ANs, how many he sees and trats a year, how many has he treated in the past, what does he recommend and why, outcomes of his recommendation, possible side effects, impact on your life, etc etc. I am missing lots of questions, but I'm sure you ahve lots more yourself!

Ciao, and all the best

Lorenzo

[Carol]

Dear ShoeGalBecky
I would read everything I could on the subject about what the size of the AN means in terms of the kinds of treatment that can be offered to you and then I would read up on the various types pf treatment that are possible -- what the expected outcome of each treatment is and what the possible side effects are.  I did this and, while it's scary and while I changed my mind about treatment several times along the way, by the time I talked to the radiation oncologist (my choice of treatment) I understood what he was saying and felt capable of making an informed decision.  I would also take someone with me for the session as it's easy to miss things due to the stress everyone feels at that moment.  It's important to know that you are not alone and it's important to know that ANs are treated successfully by whatever method is chosen.
Good for you to keep after that doctor of yours!
Best of luck
Caryl

1.6 cm. AN treated by 25 FSR sessions November-December 2006 - no side effects to date.

[Joef]

Shoegal .. welcome! , sorry your here .. but since you have a AN, this is the best place to be. lots of friendly shoulders here 

How big is your AN ? do you know? .. size will kinda dictate if you can go radiation or surgery route...

[ShoeGalBecky]

Thank you all so much for replying to my message. It feels so much better to know tht there are others out there who are going through or have gone through the same thing. As of now, I know nothing other than the Dr. telling me I have a right AN and showing me a spot on the MRI. He really is not qualified to tell me more and referred me to a "specialist" at the University. I will find out more Monday. I will make sure to discuss size, location, treatment options and my symptoms. I am reading previous posts as well as all responses to this post to try to get some idea what I need to find out. I really am pretty clueless about AN's.

[Obita]

Hi ShoeGalBecky and welcome!!

I know what you mean by scared but relieved.  Been there, done that.  I was treated for fluid in the ear for months.  Finally, I ended up at urgent care because I was bouncing off the walls and vomiting.  I had a 2.5er in there and was starting to have major troubles.

If you click on the Acoustic Neuroma Association logo at the top right it will take you to the homepage.  Click on Overview and then questions for treating physician.  It is a good guide to have for future appointments.  Some people need to see many doctors to feel comfortable with one. 

Good luck tomorrow and please come back and let us know how your first appointment was.   Kathy

[IAHeel]

Hang in there. There are lots of folks here to support you. My wife had a 1.9 cm AN removed at the House Ear Clinic in LA on 1/8. She is doing just ifne. Radiosurgery and microsurgery are both reasonable alternatives. We looked very closely at radiosurgery before making our final decision. Spend a lot of time researching your options and thinking thorugh the pros and cons. Stay with the scholarly research. Google scholar is a good way to get to that literature. The House site is a good source. They will do radiosurgery and do see it as a reasoanable alternative. As you will see, a lot of folks on this site have gone to a Dr. Chang for radiosurgery. We will all be cheering you on.

Fred

[Jeanlea]

Becky,

Welcome to this site. There are so many helpful people here.  Sorry to hear that you have an AN, but it must be a bit of a relief to finally know what is causing your problem.  I notice that you are going to UW Madison.  Where are you from?  I had my surgery in Milwaukee. 
You will want to find out what size your tumor is and it's position.  That seems to make a difference in the type of treatment choices that you have.  It is important to find a doctor that has a lot of experience with ANs.  Good luck at your appointment tomorrow. 
Jean

[ppearl214]

Hi Becky and welcome

New.. yes.... scared, of course... and yes, you should also be relieved as all of us are related to AN's in one form or another (either patient or family member, etc).  Many here have given you great tidbits so far and my hope is that you don't become too overwhelmed with the wealth of info available here in the forums... just take a deep breath, you're gonna do great... and remember one thing, ok?  We walk beside you, not behind you. We are arm-in-arm in our AN journeys and we're right there with ya!

Hang in there and good luck at the appts.

Phyl

[Kathleen_Mc]

Shoegal: I know how you feel, finally knowing what is wrong can be relieving, I myself was misdiagnosed for 4 years and treated "psycosomatically".....I knew there was something seriously wrong and the doctor's were finally treating me for MS when the tumor was found. I thanked God it was something that could be treated, and started crossing my fingers that I would live to get off the table (very large tumor, was told 50/50 chance of getting off the OR table alive).
Best of luck and health
Kathleen

[Battyp]

Shoegal how did your appoitment go? 

When you can get a copy of your report and mri to keep on hand as you can send them for consults to various places in order to glean more infomation on treatment options. 

Welcome to our exclusive club and know you're not alone!

Hugs Michelle

[okiesandy]

Shoegal,

 Let me add my welcome. I guess I was lucky (?), I went to bed one night a healthy well balanced hearing woman and woke up not being able to stand, deaf three days later. Exactly two weeks after this I found out I had a AN. Never heard of such. Now, I feel that I know more than I ever wanted to know about anything.  My very best advice is to do absolutly nothing for a while. You need time to research, digest and talk with others. Of course if it is a medical emergency and the tumor is huge you may not have this choice.

My AN was fast growning and still I took 9 months to come to the final decision. I changed my mind just days before surgery and had Cyberknife. So far, no regrets. I have improved since treatment and while not perfect it is about 90% most days and still improving. Don't let anyone scare you into a quick decision. Feel free to change doctors, get 2nd, 3rd or however many opinions you need. If your doctor is not open to questions then go else where. There is no one treatment fits all. My first doctor said take my time and then set me up for local surgery date two months later. I later found out he has only done 20 to 30 of these surgeries. Not enough.

This will be a long, strange journey. A real learing experience. If you stay in our exclusive club you will meet and talk to many wonderful people. In all likely hood you will make some life long friends. So, you see it is not all bad. You can cry, whine, be afraid, rejoice, question and we are all here for you.

Sandy