confused about choices need stories about post op recovery

[tsambo]

I have a 2cm AN.  I have been given both surgery and GK as options but seem to be being steered toward surgery.  I need anyone out there willing to discuss there post op recovery with me.  I am really terrified about surgery.

[Kaybo]

tsambo~
I had surgery 12.5 years ago and kind of had a rough go of it but my tumor was MUCH larger than yours AND medical advances have come SOOOOO far since then!  I would be more than happy to talk to you or at least be a listening ear.  Where are you located?  I have unlimited long distance in the US - PM me (on left) if you would like to chat.

K

[Debbi]

Hi Tsambo-

Your tumor is of a size that both radiation and surgery should be viable options for you.  Have you consulted with surgeons who specialize in both approaches?  This is important because, in my experience, each surgeon will tend to have his/her favorite approach and may not be well versed in other approaches.  This is one of those times when it pays to be a very well informed patient.

I have chronicled my entire pre and post surgery experience in my blog, see signature below.  I am also willing to talk with you on the phone if you send me a PM with your phone number and what time zone you are in.

Debbi, in New Jersey

[ppearl214]

Hi Tsambo and welcome. Glad you found out and as you can see, everyone here is very supportive and willing to share experiences with you.

The ANA has a "Willing to Talk" list, comprised of patients that volunteer their time to speak on the phone with other AN patients to share experiences and knowledge. I know the WTT list was recently updated, as it now notes who had what procedures done.

You can learn more about the WTT list in this thread:

http://anausa.org/forum/index.php?topic=3252.0

If you contact the ANA office, they are more than happy to send you a package of information, which includes the WTT list....

Just a thought to help you during this time.

again, welcome.
Phyl

[mk]

Tsambo,

I had GK back in April. I have posted in various threads, if you like to check them out. Feel free to PM me if you need any details.

Marianna

[leapyrtwins]

Tony -

just responded to your PM this morning.

Gave you my email address (also listed in my forum profile) and my phone number.

Although my PM said it, I'll say it again, please do not hesitate to call or email me.  Same goes for your wife.  Seriously.

Hang in there; you'll get through this.

Jan

[mimoore]

Hi Tasambo,
It can be quite scary before surgery our imaginations can go wild. You have come to the right place (I wish I found this site prior to my surgery) to ask questions and support you through this journey. My prayers are with you - you will be okay. We are here for you.
Michelle 

[dufreyne]

Hello and welcome to this forum.  I am sorry to hear of your recent diagnosis, but very happy that this is a benign tumor.

We all understand your angst about your recent diagnosis and are here to help you understand your situation and treatment options.  Hopefully, we can all shed some perspective on your situation.  

Before I comment, do you know which surgical approach has been recommended?  Where is the tumor located--is it entirely in the IAC (canal) or is it pressing on the brainstem?  How is your hearing?  Balance?  

Dufreyne

[Sue]

Hello Tsambo and welcome to the forum.  Sorry you have to join our exclusive little club, but at least here you will find comfort, information and support.  With regards to your question, it is hard to tell you how you are going to handle surgery ad the recovery because everyone is different.  You could go through the whole thing with little discomfort and be up and running in no time, or you could, unfortunately, fall victim to every post operative problem that there is!  Unlikely, but there you go.  It's a risk we all take no matter what our treatment is.  I had hoped the GK would take away all of my symptoms, but it hasn't.      That's the way it goes sometimes.  The only thing you can do is to get the BEST SURGICAL team you can get in  your corner.  That way, the odds are more in your favor!   

I wish you the best of luck in your treatment and eventual recovery,

Sue in Vancouver USA

[MAlegant]

I was also terrified of surgery (who wouldn't be) but it turned out to be the right decision for my situation.  Whatever you decide to do will be ok.  PM me if you want to hear my story.
Best,
MA

[wendysig]

Hi Tony,
Welcome to this forum.  You will find this forum offers a wealth of information, compassion and support.  We all understand the fear that the AN diagnosis causes, we've all been there.  It's not unusual to be scared to death when you get the news that you have an AN -- probably most of us were.  It is also not the end of the world since they are benign and very treatable.  As many have said your tumor is small so you may have the option of radiosurgery or osurgery unless the location dictates surgery.

It's important that you're sure you understand all  options.  Make sure your choice is based on what you want to do and not what someones else says you have to do.  Being comfortable with your choice is an important/essential part of the decision making process.  The fact that we have so many treatment options is part of what makes this thing so difficult.   I was very llucky my ENT sent me to see my neurotologist.  He is a wonderful doctor and was very supportive from the start.   Even though I didn't know what treatment choice I was going to make, he gave me his e-mail address at my initial consultation. He did not recommend any treatment over the other, even though he only does surgery.  He also encouraged me to make an informed decision by getting  other opinions and doing  research,  and subsequently answered over 100 questions (no kidding) during my decision making process.  Everyone here has been wonderful too and I don't think I could have gotten through this as well without them.

 My AN was also 2cm and I chose surgery for many reasons and have been pretty happy with my outcome.  Many people are just as happy with radiosurgery.  My surgeons were wonderful and I had complete faith in them.   Although I am SSD, this was expected at the time of my surgery (I had the translabrinthine approach) I have no facial issues and some balance problems that are improving.  I am very hopeful that most, if not all of my balance issues will eventually resolve.  According to my neurotologist, you regain 90% of your balance during the first month or two post-op and the rest in 6 months to a year.  I am now just over 12 weeks post-op and doing great. 

Wishing you all the best,
Wendy

[leapyrtwins]

Hi, all -

Just wanted to update this thread since I heard from Tony's wife, Gena, earlier today.

Tony has scheduled his surgery for 11/12/08 @ Hinsdale Hospital with my favorite AN surgical team - Dr. Robert Battista and Dr. Robert Kazan 

I'm not sure which approach he has decided on, but whichever approach it is, I'm confident he'll be in excellent hands.

I'll put Tony's surgery on the AN Calendar, so we can all remember to wish him well and keep him and his family in our prayers.

Jan

[sgerrard]

Thanks Jan, it is good to hear that Tony and Gena have a good plan in place - as well as an experienced ANA forumite to help them out.

Steve

[Kate B]

Hi Tony,

Chicago Ear is an excellent group.

Which surgical approach will they use?

Kate

[Sue Vogel]

Tsambo - My tumor was about the size of yours and was removed less than three weeks ago.  I am doing great!  I am a science teacher so I had done loads of research before my surgery.  I pretty much knew what the surgeon was going to say based on my needs to return to the classroom with as little facial and eye issues as possible.  I was fortunate to have one of the very top surgeons in the country 15 miles from my home.  My translab. surgery was based on the size of my tumor, my career needs, and my age.  I wanted the whole tumor removed if possible.  I had luck and prayers on my side.  My tumor was pushing into my brain stem but had not invaded the facial nerve.  The skill of the surgeon is a huge consideration in addition to your personal needs.  I had already lost more than 50% of my hearing, so losing it all was a better option for me than risking damage to the facial nerve.  I had also experienced vertigo for four years, so my brain may have already done some of its retraining before my surgery.   I had a very positive attiitude going into the surgery which the doctors said contributed to my overall success.  I went home on the 4th day including surgery day.  After reading many postings on the AN forum, I think it is very important to note that each of us are individuals with different experiences and needs.  We share this traumatic learning experience which validates and supports the beauty of this forum.  I am so appreciative for the open sharing of experiences and the wisdom to view my own scenario in relative terms that comfort me.  I have watched the video of my own tumor removal (9.5 hr. surgery,) and I am in total awe and amazement at the ability of the body to overcome and to conquer the unimaginable.  You, too, will amaze yourself.  Blessings to you as you face what so many on the forum have faced before us.
We will read your success stories soon.  SUE