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[Donna R]

Hi, my name is Donna and this is the first time I have actually posted on here. I am so glad I found this forum. I
found out about my AN right before the holidays, and I just finished my second MRI so I am between the watch and wait period and possible surgery. I think I have decided on the surgery. Everything just seems so confusing on what to do...I haven't even heard of acoustic neuroma berfore! I started with some trouble hearing in my left ear, now I have almost none, I am hoping after surgery to get some hearing back, but I'm not counting on it.  I am really nervous about the surgery, but I have pretty much decided to go that route.
I am from the Philadelphia area, has anyone here felt so confused on what to do? I have read so much about all of the options...

[leapyrtwins]

Hi Donna R.  Welcome to the forum 

We were all confused at some point in our AN Journey - some of us still are    Being scared is another common feeling. 

Making your treatment decision will most likely be one of the hardest things you have to do.  It's definitely not easy.  It should be a personal choice, though.  What was right for me (surgery) isn't necessarily right for you.  You need to do your research, weigh you options, find the doctor(s) you feel most comfortable with (experience in treating ANs is vital), and then decide.

I'd like to recommend you contact the ANA and ask them for their informational literature.  It's very well written and explains a lot - about everything AN - in layman's terms (not medical speak).

Mind if I ask what size your AN is?  That will give us a little insight on what your options currently are.

Thanks,

Jan

[Donna R]

Hi Jan...thanks for your input..well, my first MRI showed it was around 2.5 - 3.00 cm. and it did not grow in the 3 months between MRIs. With speaking to my doctor, he really doesn't make the decision for you, but it seems like surgery would be the best option, I pretty much thought I had this decision made, I even thought that I could plan the surgery for the summer while my kids are out of school...but I keep on questioning..I am sure everyone goes through this nervous period?

[Kaybo]

Hi Donna and welcome to the group that you don't want to be a part of, but is an AWESOME group of people!!  I know that this is a very scary and confusing time.  Try to step back, take a breath and take some time for YOU.  You will get through this but it does take some thought, paryer, time and patience - among other things!  Please feel free to ask ANY questions - we are here to help YOU through this AN Journey!  Please PM me if you would like to chat - I'd be more than happy to call you!

K

[Donna R]

 

    K, 
          Thank you so much! I am very happy to have found this group who are so supportive of each other!
   
     Donna

[microsoftfree]

Hi, Donna! I'm waiting on my diagnosis and have found so much help here. These people are awesome. If I don't have an AN, I'll still at least lurk because I'll want to see how people are progressing.

[pauline]

I have been on watch and wait since 6/08 but since my last MRI showed growth I find I now have to make a decision of which surgery to choose and have it done this summer.  It gets really hot in Phoenix in the summer so it would be a great time.  I tried to list all the pros and cons of microsurgery/gamma/cyberknife on a piece of paper for comparision.  Then I listed the pros and cons by priority with how it related to me and my situation.  I am a musician, music teacher and golfer.  I know it has helped me to just see it on paper.  However you go about making your decision, I know that this site is the best!  The people on the forum are very supportive and help clear issues us for me.  I do not post much but I read a lot of posts and that has also helped me in a very positive way!

I wish you much luck!   Paula

[EJTampa]

Hi Donna,
 
Based on size and the fact that you have lost most of your hearing in your AN ear, it is unlikely that you will get more hearing back.  Sometimes they can save what hearing you do have.
 
Also, I think beyond 2.5 cm, surgery is usually the course of action over radiation.  Hopefully if I'm wrong someone will chime in.  In any event, that's getting to be a large tumor and in my opinion, watch and wait would not be an option for very long.  There are many other nerves in that area that may soon be impacted, especially if it grows again.
 
We are all here for you in your AN journey, and know that prayers and thoughts are heading your way.
 
Ernie

[nteeman]

Hi Donna,
 
Based on size and the fact that you have lost most of your hearing in your AN ear, it is unlikely that you will get more hearing back.  Sometimes they can save what hearing you do have.
 
Also, I think beyond 2.5 cm, surgery is usually the course of action over radiation.  Hopefully if I'm wrong someone will chime in.  In any event, that's getting to be a large tumor and in my opinion, watch and wait would not be an option for very long.  There are many other nerves in that area that may soon be impacted, especially if it grows again.
 
We are all here for you in your AN journey, and know that prayers and thoughts are heading your way.
 
Ernie

Ernie I agree with what you say here but would like to add as I had a 2.5 cm AN all consults I had with MDs recommended surgery but I did find radiologists who would do radiotherapy on a tumor that size. Of course everyone need decide for themselves but my point is that you can always find someone who will recommend the alternative treatment, you need to consider all opinions.  In my case the surgery opinion made more sense to me on a long term basis.

Neal

[Donna R]

Thank you so much for your replies, yes I agree, that is why I am pretty much decided on the surgery.
I have an appointment next month to meet the other doctor who would be working with my doctor on the surgery for the first time, so I guess after seeing him I will definately have to have a decision made...you are all so helpful...thanks!!

[leapyrtwins]

While 2.5 cm is usually the cut off for radiation, some docs will do it for an AN a little larger than that. 

My doc, who does GK, told me that at 2.5+ cm radiation would not have been an option for me.  But docs are somewhat different and believe in different things to some extent.

Donna R -

I think surgery is a good choice - I hope my earlier response didn't imply that I didn't think it was.  I just wanted to make sure that you were given all the possible treatment options that were relevant in your case.   Because some docs only do surgery they sometimes don't even mention radiation to their patients.  We like to make sure everyone on the forum is fully educated.

That said, surgery isn't a piece of cake, but it's not the end of the world either.  It's typical to be nervous - I know I was up until a week or two before surgery; they I developed a wonderful sense of calm.  My surgery was almost 2 years ago and today it's just like a distant memory.  I'm happy it was my choice, but I'm even happier that it's behind me.

Jan

[sgerrard]

Hi Donna,

Glad you found the forum, we are happy to have you join us. We are all in the same boat, or have been. Welcome aboard!

Steve

[Jim Scott]

Hello - and welcome, Donna ~

I'm sorry you were the recipient of an acoustic neuroma diagnosis but I'm pleased to see you found this site and the forums.  We'll support you in whatever way we can, whether you have surgery or radiation.  We empathize with your fears and concerns because we've 'been there'.  Please stay connected here.  I'll look forward to your posts. 

Jim

[LisaP]

Hi Donna,

Welcome to the forum, yes things can be confusing, but hang in there, take a deep breath.  When you first are dx not only are things confusing but you are probably also scared.  It is all normal, take your time on your decision and ask all the question that you can.  This forum is great. 

Best wishes,

LisaP

[Vivian B.]

Hi Donna,

Sorry I am replying late. I can understand what you are going through. I am also watch and wait. The anxiety is the worst part, but just think most of us are doing it and will come through with it. When is your next MRI? Mine is in September almost 6 months away.
Everybody on the forum is great for support.  If you are having a hard time dealing with it, you may want to speak to your family Dr. about it and he may prescribe something. Keep well.

Vivian