Lessons learned so far from one newbie to others

[suelay]

1)  This is a great place for intelligent, articulate and compassionate help.

2)  Don't listen to people, including doctors, who do not have a LOT of experience with ANs.

3)  Don't listen to well-intentioned doctors, who have not looked at your films and hearing test.  As one of my excellent doctors told me:  "There isn't a one treatment fits all"  An individual's age, health, symptoms, tumor size, location and personal preferences all must be factored into deciding what's best for you.

4)  All medical procedures/approaches involve risks and benefits.  Try not to focus on the rare, worst-case scenarios of your various options (if you are lucky enough to have options).

5)  Give yourself a break.  It's understandable to have "meltdowns" once in awhile and this is a great place to do it. 

6)  I call my tumor my "marble" because it sounds better to me, doesn't scare my children and means I haven't lost them all.....

PEACE

[Laura]

Sue,

Being a newbie myself you pretty much sumed it up. Thanks!

P.S. regarding point 4 ( All medical procedures/approaches involve risks and benefits.  Try not to focus on the rare, worst-case scenarios of your various options (if you are lucky enough to have options))... sometime I wish I didn't have a choice. I think sometimes it would be easier if they said "you have an AN and this is what you must do"!.

[ppearl214]

Sue, fantastic list!  Thanks so much for sharing this thoughts with us.... and btw, mine is the "booger", humbly stolen from Mark (that is how he referred to it on the phone with me one day)

[suelay]

Boy, do i here you on that one.  Sometimes I really want someone to just make the decision for me, then i read about people who had such large, sometimes even life-threatening tumors that they had no choice and I think again.... I can't remember  who sent me an email saying for lots of people, the period in which they are weighing their options is the hardest emotionally.  

[Gennysmom]

I'd add listen to your gut in decision making.  Don't let anyone tell you what you should do...find out all your options and do a gut check and do what feels right to you.  I'm doing well with my decisions because I educated myself on my options and by the time I met with the ENT/surgeon, I had already made my decisions.  Amazingly enough, they had the same conclusion I did, and it only strengthened my belief that I did the right thing. 

[Jim Scott]

Like others, when I found out that I had a Acoustic Neuroma that had to be removed, and soon, I educated myself and posed lots of very direct questions to my nuerosurgeon, who honestly and patiently answered all of them and claimed to be impressed by my knowledge.  Thanks to this site and a few others, I was able to ask the 'right' questions and make an informed decision on my AN crisis.  Like Gennysmom, I made my choice (retrosigmoid surgery and fractionalized radiation) and as all went well, I am very glad that I made the decisions I made, with some knowledge beforehand, that helped me stay calm, focused and in sync with my surgeon. 

It's obvious that you must take 'control' of your medical  decisions and to do that, you must be knowledgable about procedures and likely outcomes as well as risks and benefits, etc.  This site (aside from the messageboards) is a wonderful source of knowledge for any AN 'newbie', if they wish to make use of it. 

[Battyp]

Sue great list!  I wish I would have found this site before my treatment but I'd still have made the same decisions (as I had no option but one  )  I'd of been more informed and better prepared of what to expect!

[Sue]

Hi Sue,

I also like your list.  Very well said.  And I like that you haven't lost all your marbles, yet! 
I kind of refer to my AN as 'that thing..".

Have a good week,

Sue in Vancouver