satman update {sucks to be me}

[satman]

well i had my 2nd mri reading and now more worried than ever.
it has been brought to my attn that i now have ,excuse the spelling,meningioma.
seems to be a different type of benign growth,and i am told that millions of people have this thing and dont know it because they never get mri's
my doc has told me that if it grows toward my brainstem then i will have to have another surgery,dont think i can go through that again.
but on the upside ,if it grows and does not grow toward my brain stem then chances are i wont have to do anything about it,the doc says i could live to be 90 without doing anything about it,i will never live that long anyway,ha,ha. so now i get to watch and wait,however,the old tumor[8cm] has no signs of re-growth,yay!
i can honestly sat that i am freaking out on this thing but theres nothing i did to cause it and nothing i can do to change things.
my doc said to leave his office without worrying about it,i do trust him but knowing it's there is tough.[sucks being me].

[ppearl214]

Hi satman... I'm sorry to hear things are in a tail spin regarding these diagnosis for you.  I'm going to suggest something.

A user here, Sheryl, has endured meningiomas with her husband. He had one... had surgery on it.... had a regrowth and had cyberknife on it last October.  Sheryl is a terrific reference to discuss the surgical and radio-treatments for meningiomas. 

I also received this week my e-newsletter from the National Brain Tumor Society ... tomorrow happens to be "Meningioma Awareness Day in Boston".  I copy below from my e-newsletter in hopes it gives you a good reference point for add'l info re: meningiomas.  I noted this to Sheryl in casual conversation and I thought... if memory serves me right... that she and her husband may possible attend tomorrow.  I hope this info helps. Please hang in there....

Phyl
========================================================

"Meningioma Awareness Day (MAD) in Boston - September 6, 2008

John B. Hynes Memorial Convention Center in Boston , Massachusetts will convene meningioma patients from across the country to hear the world’s leading meningioma experts address topics such as the latest surgical techniques, emerging and experimental therapies, and new treatment strategies for meningioma. For information on this program and other conference details or to register by phone, please contact: Tammy Gilson-Hodge at 617-525-8395 or tgilson-hodge@partners.org. For more information and to register visit: http://www.brainsciencefoundation.org/matriarch/"

[leapyrtwins]

satman -

while I'm sorry to hear about the meningioma, I'm thrilled to hear that your AN has no regrowth!  Since it was 8 cm I find that totally amazing!!!

You have been through a lot - to say the least - and you've always come through it.  I have all the confidence in the world that you can get through this new development.  Let's keep our fingers crossed that the meningioma doesn't grow towards your brain stem.

Jan

[yardtick]

Satman,

I'm so sorry you have another detour on this road of life.  It amazes me how doctors can dish out such wonderful advice, how can you not worry about it.  This is in your brain not his.  Did you get the size of this invader?  Remember you are a survivor.  You had an 8cm acoustic neuroma, had surgery and thankfully you are here.  I wish you lived around the corner from me so I could run over and put my arms around you.  You need some pampering my friend, to get over the initial shock.  I hope you have a good support system, lean on them because you are entitled.

Please take care of yourself,
Anne Marie

[satman]

thanks ladies,pampering is good.
this thing is only 7mm wide and 6mm across.
i had mentioned radiation to my dr. and he says that he would not do that for my case as that would do more harm than good to me.
i considered getting a 2nd opinion but what if the 2nd dr. suggest surgery right away or radiation which goes against everything my current dr. says, and after saving my life removing an 8 cm tumor with basically no complications i have to say i trust this man. in my eyes he is the best of the best and i could not trust another dr's. opinion.
does that make sense?

[leapyrtwins]

satman -

your reasoning makes total sense to me.

My AN was nowhere near as large as yours, but if I ever have to have anything AN-related again, I'm going right back to my docs since I have a phenomenal level of trust and respect for both of them.  So they better not retire anytime soon 

I think you just have to take things as they come and let your doctor lead you in this.  I have no doubt he won't "lead you astray" - and it sounds like you have no doubt too.

Jan   

[lori67]

Satman -

The fact that you survived an AN that large to begin with tells me you are stronger than most, and that your surgeon is truly skilled.  Since he knows your history, I think I'd trust him when he says not to worry.  I know, it's easy for him to say - it's not his head, but he has invested a lot of time and energy into your head.

I can't exactly run over to pamper you either, and I'm not sure I'd know how - I'm guessing a manicure won't help - but maybe a big bowl of ice cream might do the trick.   

Lori

[satman]

topped with tequilla,which i have a feeling i might dive into tonight.

[OMG16]

Sat.....I just logged on after being gone for awhile with surgery and a MRSA infection.  They put me on IV antibiotics and I developed an allergic reaction and they had to take me off.  I was devastated when 10 days later my infection and pain returned.  I have decided like my son that I need to wake up each morning and think of just 1 reason to smile and to take just 1 minute at a time if that is what I need to do.  I know how hard this can be and you have been through so much in such a short time.  You should be very proud of yourself!  Don't  drink to much tequila you could fall and hurt your noggin.  Maybe they could tie you off to your chair with a harness at least then we would not have to worry about you (lol).  Hang in there we are all on your side and YOU WILL GET THROUGH THIS TOO!    16

[satman]

thanks omg16 havent heard from you in awhile,sorry to hear about the surgery ,hope your ok.
i will have them tie me down,they normally have to anyway,ha,ha.

[OMG16]

Good plan it is nice to know that you are taken care of and we will not have to worry.  I'm doing well now at the moment and am on my way out of town so gotta run.  Let us know how you are doing.  16

[Lamsue23]

Satman,
     Wow, this does really sucks........but I'm sure you already know that we are all behind you.  Like it was said, you have overcomed a lot already and now I know you will handle this also....One day at a time!
     My prayers are with you on making the right decision.....Hang in There!

[GRACE1]

Definitely go for a second opinion - and a third, if necessary. 

[MAlegant]

Satman,
I am so sorry to hear this.  Of course, if it stays small and never causes you any grief than it will be fine but just having to worry about going through this again is enough to send anyone directly into the Tequilla.  Try to be calm, it is practically invisible compared to your (former) AN.  It is great that you trust your doc; give it some time and wait and see what happens.  Again, I am so sorry and yes, it sucks big time, but what can you do?  Take a deep breath and carry on; you are incredibly strong.
Best,
Marci

[Jim Scott]

Satman:

Let me echo the chorus of sympathetic words that have already been posted.  This meningioma news does stink, no question, but it may not be all that terrible if it remains tiny.  Because we cannot predict the future I would just try to live with it because when you're all done worrying, it'll still be there.   I would vow to worry if the next MRI shows growth.  Still, although you're obviously a strong personality you certainly have reason to feel a little down about it.  However, your MRI no-growth news should certainly help alleviate the blues, somewhat.  Well, that and some Tequila should do it.  Have a good weekend. 

Jim