Still W+W after 2 years

[G_Man]

Hey forum friends.  I haven't been here actively in a while, sorry.  In early August I had my 3rd MRI and I'm still where I was in 2009 when I was diagnosed.  My DR. did say, "You know the actuarial tables say you are going to live to 84 and chances are this is going to grow.  Have you made a decision on what you are going to do?"  I thought, "Man, what a kill joy!"  In his defense the earthquake had just occurred a couple of hours earlier.  Anyway, he said that 50% of people now do radiation and suggested CyberKnife for me.  I'm really a bit concerned with radiation.  I have another neurological issue in my noggin' and I'm a bit worried about brain swelling.  But for now I'm continuing to learn and hang in there. 
I have noticed that I get headaches after being exposed to loud sounds.  The headaches are on my left side only where the AN resides. 

[ppearl214]

Hey G_Man!

was terrific to see you in Cinci and hope you sat in on some of the workshops regarding radiation......... I am now 5 yrs post Cyberknife and you met others that had radiation done..... so, you got to see, 1st-hand, many outcomes that you can help make a decision.

Have you spoken to a neurologist re: the headaches? A headache specialist (which is usually a neurologist)?  If yes, what are they recommending?

Phyl

[Mickey]

Hey G-Man! I`m going into 5th year now W+W with approx. 1cm AN same as it was when first diognosed at age 58. As part of the W+W brigade with many interesting posts on an active lifestyle with supplements and other ways of naturally treating this condition, getting involved no matter what you decide to do... I used to have Migrane headaches quite often but gradually by taking care of myself I`m down to a rare occasion with basicly just an "aura" and not much pain. I`ve added Feverfew herb to my many supplements for this. I also put cotton in my ears when around loud noise exposier. I`ll be 63 this month feeling pretty good with next MRI in a year looking at this as least evasive as possible. Best wishes, Mickey

[G_Man]

Hey G_Man!

was terrific to see you in Cinci and hope you sat in on some of the workshops regarding radiation......... I am now 5 yrs post Cyberknife and you met others that had radiation done..... so, you got to see, 1st-hand, many outcomes that you can help make a decision.

Have you spoken to a neurologist re: the headaches? A headache specialist (which is usually a neurologist)?  If yes, what are they recommending?

Phyl

Phyl
       It was great meeting you too. 
       I was seeing a Neurologist right after I was first diagnosed.  He turned out to be quite weird.  I really haven't broght up the headaches as they haven't been very frequent.  I was getting them for a few days straight at work because I was playing my headphones too loud.  Once I adjusted them things were better (much less frequent headaches).  I haven't brought the headaches up with my Otologist but I probably should have.
       I didn't go to any of the workshops on radiation at the symposium but I did attend the general sessions where radiaton was prominantly featured.  The next NYC ANA chapter meeting on Sept. 24th will have a guest speaker who will speak on Gamma Knife.  I plan to be front row on that one. 
      Thanks for responding to my post.  Hope to be seeing you at the next symposium.
Glen

[G_Man]

Mickey
     I'm really hoping to be in your shoes 3 years from now.  But I know I've had symptoms of this for a very long time and I'm only 48 years old.  I had an MRI in 2000 that showed nothing.  Even if I'm watch and wait for another 10 years and it grows at the same rate it probably has in the past 10+ years, I could end up with something 2X what I have.  What I've seen in the past couple of MRI(s) is a very positive thing.  I'm hoping that will continue, but I also want to be a bit proactive. 
Truth is that I really don't feel ready yet to make a treatment decision partly because I still can't believe that I am in the position to have to be making this decision. 
**** I realize I'm going a bit off track with the following but can your relate to it??? *****
Funny, if I listen to some of the people around me, who don't have an AN, it's very easy to hear them say, "I wouldn't have radiation" OR "I wouldn't let them cut a hole in my skull the size of a jam jar lid".  But they don't have an AN so they can flippantly say that.  They haven't researched it and they don't understand the numerous possible side effects of any of the choices.  I look normal to them so they give me the impression that they think I'm making the whole thing up.
---
As you can tell, I'm experiencing anxiety over this not unlike many who have come before me down this road.  I am the type of person who always has a plan.  Who researches before buying any major item.  Who agonizes over how to connect his ipod to his stereo before finding just the right docking station (and it works perfectly BTW).
*************************************************************************
It's always good hearing from you Mickey.  Have you thought about attending the next NYC ANA meeting on Sept 24th?
Glen

[Mickey]

I`m hoping to see you in Manhattan on the 24th...  I hear what your saying about everything. All situations are different and everyone in our situation has to do what they think is the best choice for themselves. The best thing we can do before is to get all the knowledge we can. It`s great to hear what everyone has done and their outcomes. Best wishes, Mickey

[G_Man]

I totally agree Mickey.  See you on the 24th.