How do you balance information and overload?

[SGBlons]

Still less than 3 weeks since my AN diagnosis and things are moving right along.  I have an appointment at the Mayo Clinic 3 weeks from now, and just sent my scan to the House Clinic for their opinion as well.  I'm reading the material I've received from ANA and browsing this forum.  I want to be as well informed as possible as I prepare to meet with the doctors, which means reading about ALL the possible scenarios.  Which can be overwhelming!  I'll wind up going down only ONE of these paths, not all of them, but I don't see any way to avoid having to learn about everything.  I'm trying to take it in small doses, and trying not to let my imagination leap ahead too far or dwell on some of the scarier images.  I'm noticing symptoms of stress and trying to take things slow and easy. 

How have the rest of you dealt with this phase of things?

[Jim Scott]

Hi - and welcome ~

To be honest, every AN patient handles the diagnosis and treatment decision a bit differently.  Naturally, many are upset, even panicky for a time but eventually that passes as you gain more information about what you have, how to deal with it and what to expect after treatment.  Some AN patients are very methodical and gather information, categorize it, ask questions (both to doctors and here on these forums) then make a deliberate, informed decision.   Some of us (Jim raises his hand) aren't diagnosed until their AN is very large and impacting their brain stem, making surgery the only option - and the sooner the better.  Although some take their AN diagnosis calmly, relieved that it isn't cancer, none of us are sanguine with this diagnosis.  One has to studiously avoid allowing the 'what if's' to overcome us and make us so worried that we'll experience a bad outcome following surgery or radiation that we can't make a decision.  The cold hard fact is that, like many things in life, there are no guarantees with AN treatments, be it surgery or radiation, no matter the doctor, the method of treatment (Retrosigmoid, Translab or Middle Fossa surgery) or radiation (CyberKnife or GammaKnife) - or even a combination.  I underwent debulking surgery ('Retro'), then (90 days later) FSR (26 sessions) and had a very good outcome with basically no complications, not even a headache.  Others here enjoyed similar outcomes while some did have some issues to deal with and in relatively rare cases, some AN post-treatment patients struggle with seemingly intractable problems.  However, even when post-treatment problems arise, they are almost always temporary. 

We usually advise 'newbies' (newly diagnosed AN patients)to step back, take some deep breaths and don't try to learn everything all at once because, as you note, it can be overwhelming.  We even suggest taking some 'time off' from perusing these forums so as not to overload yourself with Too Much Information.  However, we stand ready to inform, advise and support you as you work through this phase of your AN journey. I'm sure others will be along to offer more suggestions and to welcome you here.

Jim         

[TJ]

As Jim states you really need to stop, step back and catch your breath.  All of us have gone though the same feelings and concerns.  For myself I know I just wanted to deal with it.  But my level headed wife told me to take the time to get the information and to get it right.  You do not want to rush into the wrong decision.

TJ

[LisaM]

You have two things to your advantage;  your age and the size of your tumor. 

Take that deep breath and take your time weighing your options.  I was diagnosed last April and was certain that I needed to decide on treatment and act upon that treatment by the end of May.  Getting the news of having a brain tumor, for me at least, was very scary and anxiety provoking.   I became obsessed with obtaining information and, yes, became overloaded and eventually had to take a step back.

After my emotions quieted, I decided to wait and watch.  I had an MRI in July that revealed a stable tumor, no growth.  My next MRI is next month.  My feelings now are much more calm and rational than they were last May.  Unless it is life threatening... brain surgery is not something to rush into. Something that was very helpful to me (besides this incredible forum) was talking with actual patients of the doctors I was consulting.  I spoke with probably 9 or 10 people.  Some that had translab, some that had retrosigmoid, cyber knife and gamma knife.  Hope these words help.

 All good things for 2012!

Best,
Lisa M

[stephSF]

Hi.  It has been about 5 weeks since my diagnosis.  I have scheduled my surgery for Jan 2012.
I still get a little freaked out but not running in constant panic mode.
I still read posts and correspond regularly with a few people here.  I think
This forum is the very best support.  The books you got from the
Association are really intense so try to balance your research with
Self care time as well.  You are not alone at all.  I gave up my gruesome obsessive thoughts
About the surgery when I realized I was way out of control with my thoughts.  Just come
Here and read the positive posts when you feel out of control and
Know you have a lot of folks who totally understand

[SGBlons]

I'm so touched by everyone's generosity and kindness.  Your presence and support are very much appreciated.

While my AN is a new experience, I am well acquainted with uncertainty.  I went through my wife's ultimately successful cancer journey between 1998 and 2004.  During those years there were many scary times when we just had to wait and trust.  Of course, this time I'm the patient.  Still I feel I have learned a lot about living with unknowns and unknowables. 

Meanwhile, I have been pacing myself with the reading.  I see one of my counselors next week and plan some body work soon as well.  I had a sudden flash of emotion today that surprised me with its intensity.  But it helped move some of the energy I've been holding.  To me it's all a mysterious and amazing process, this living, whatever it brings.  Even the scary stuff.

Thanks so much for being here.

[leapyrtwins]

Manage it by taking a break when you need it.

Most ANs are very slow growing, so you don't have to rush into anything right away.

You will know which treatment/doctor(s) are right for you at some point.  I basically ended up following my heart, my head, and my gut - and in the end I was very happy with my decision. 

Jan

[Cheryl R]

Have you thought of Univ of Iowa also as many of us from here have been there.    I am a regular due to NF2 and have had 3 tumors with surgery.   Dr Bruce Gantz is the neurotologist and they do around 70 ANs a year.      I know there have been many from out of state.   He is not one for radiation however.      Many hotels in Iowa City do hospital rates which is helpful.                I have been very happy with the care there.                Good luck in where ever you chose.                     Cheryl R

[leapyrtwins]

Good point by Cheryl R.

Dr. Gantz is a wonderful doctor and definitely closer to you than the docs @ House.

I stayed local for my surgery (Chicago area) and my outcome was wonderful.

House is a great place but, in the majority of cases, there's no reason to travel so far.

Jan