A place to vent

[Captain Deb]

And THAT is why Brendalu is a PBW member in good standing.  You gots some guts girl! Not to mention a big, big heart. Sometimes it takes someone who's been there to step up. Way to go.

Be Well and Sail On!

Capt Deb

[ppearl214]

Brenda,

I commend you... and sending you MAJOR puggle-huggles for your humanity, your love of life and your unconditional heart..... you truly are a gawd-send.


I do have to comment about the mother's reaction. If I read it correctly, the younger sibling passed away (who did have brain surgery) and now, she's contending with child #2 with brain issues... in fairness, my mother (and father) are also dealing with the same. As many of you know, my sister died of malignant brain tumor (childhood astrocytoma) and now, me dealing with an AN (regardless of how many times I try to tell them it's benign).... so, in seeing my folks reaction to them having to deal with another child with a brain "issue".... I am actually not surprised.  I have witnessed what my folks handled with my sister.. .and now with me (and my multiple physical ailments)... it's kinda like what we share around here... "individual results may vary".. and if her mom is not reacting in the way we would hope, my hope is that with time and courage and strength, her mother will then be there for her as quickly as possible.  I recognize the support her daughter needs... boy, do I ever... but it's also (possibly) causing a "flash back" of what her mother went through in the past with her younger daughter.  Mom needs healing as well.

Brenda, who/what is the support network for this family right now?  As you have been there for the daughter, do you have any awareness of support for the rest of the family?  The family could be "reliving" the past and need the support as well.....

Just my opinion... may not be clearly stated but a thought that I try to share as clearly as I can write.....

Brenda, thank you SO very much for being there for them, even in light of your own situation.... you absolutely rawk.
 
Phyl

[Brendalu]

Thanks all!  I only did what I would hope someone (you all have done) for me!  I agree, Phyl, that the Mom is having a hard time with this whole thing.  Unfortunately the daughter feels like her Mom is minimizing her surgery because she didn't have a tumor, just an extra vein growing on top of the other one.  She is having bad headaches, I totally understand, her Mom thinks they are for sympathy.  I feel bad for both of them.  The Mom has a great support group, but the daughter doesn't.  I guess I understand some of the daughter's problems which she says are because she is the middle child.  That's where I always was too.  I think that this gives me something that does take my mind off my problems!  That is always a good thing.
I'm sure the Mom is having major flashbacks.  I'm praying that she comes back to the present to help this daughter. 
Phyl, I'm glad that Beanie has a good belly scratcher!  Puggle huggles to you too!
Capt Deb, I need a book on pirate speak......any suggestions?
Bruce,  I get more good information from you than I do my doctors..............any new web casts?

Brendalu

[linnilue]

My God, Brenadalu,  Thank God for you.  That poor girl, my hear tgoes out to her.  I know how she feels though because my father and grandfather both died very young of cerebral hemmorhages.  When I was diagnosed with the AN, I thought that this brain stuff was "all in the family" and that I would die too.  Noone in my family understood because it wasn't th esame but to me it was, brain=brain and that was that.  I was inconsolable but had noone to console me.  My husband was sympathetic but the rest of my family wasn't.  So thank God you took the bull by the horns to help her.  She is blessed to have you and give her a hug from me becasue I get it!  Holly

[Larry]

The people on this forum (virtually everyone) never ceases to amaze me. So often in life we get despondent about non-caring, insensitive ignorant people that have one interest only (themselves) then we have people like Brenda, El capitan, the girly, Ms yodelay hoo hoo and others coz the list goes on, and you then realise that the selfish stereotype can be squashed with some human kindness that really doesn't cost much at all.

Great stuff guys.

laz

[Patti UT]

Here, Here Larry,  I'll def drink to that!!  My hat's off to you Brenda Lu,  keep on doing what your doing, cuz kindness can be contageous.

Love you all

patti yotee

[Brendalu]

The very reason I love this board....everyone supports and helps each other.  I never thought that anyone realized how much a kind word or a virtual hug means until I started posting and reading.  Y'all are the BEST!!!!
Brendalu

[luckylady]

Was diagnosed about 4 weeks ago - have to travel over 300 miles to Dallas, Texas for the treatment -- I thought I was handling this diagnosis well -- however I woke up this morning mad at the world.  I think it is the waiting to see what the physicians recommend treatment should be -- the very disruptive ringing tone in my left ear -- and the hearing loss --
Thanks for all the information everyone shares - it has been a lifesaver.....

Susan or lucky lady.

[Raydean]

Hi Susan

Just a note to say hang in there and we'll hang with you.  Know that you're in our thoughts. Continue to use this waiting time to research your options.  Write down your questions for your Doctor, beginning with the most importand and ending with the list important.  This way the big questions will be answered.

It's ok to be mad at the world, I think we've all had days like that.  In the end I hope that you'll be like your screen name, one lucky lady!!!!

Big Hugs
Raydean

[Patti UT]

HI Susan,
    Please understand that you have just been told the unthinkable.  You will go through many emotions from fear, toanger, to wanting to blame someone, back to scared to death and angry again.  It is totally normal to go through the range of emotions as you digest the diagnosis. We have all been there and truely understand what you are feeling.  This forum and the wonderful people on it and the information you can gain from it will help you work through much of these feelings as well as help you in your decision making process for your treatment.  I am sorry you will have to drive so far. That makes it a bit harder.  I have the terrible ringing as well,somedays I it is very hard to deal with. But we all do get by and life goes on.
Take Care, My best to you on your AN journey

Patti ut

[Brendalu]

Susan,
We are here for you and it is okay to be mad at the world.  I still have days when I'm mad at the world and it has been over two years.  I say why me and my little voice (the one I don't like listening to) says why not you?  It also tells me that I am strong enough to handle it and others might not be.  So I have to believe that.  You will too in time.  My prayers and thoughts are with you as you start this journey.
Brendalu

[McFlorida]

Well, I have just found the ANA forum, and after spending half the day reading it, I have found the perfect topic in which to contribute.  I was diagnosed on June 28th as having a 6 x 12mm AN on the right-side.  After having ringing and then a dip in hearing, followed by an MRI and ABR test, and a diagnosis, I find myself surfing the web for more and more info.  I had been to my family doctor, who sent me to an ENT, who sent me to a neurotologist, who is now sending me to a neurosurgeon.  It is funny because even with the constant ringing, the rise & fall of hearing in one ear, and the lightheaded feeling at times, my biggest frustration is the slow progress towards some yet-unknown recommendation and conclusion.  I know that this type of tumor is slow-growing, but come on!  Coming to a medical decision is like watching a snail race.  Who is going to win!? Observation? Radiation? Surgery?  Time to cut to a commercial.  I appreciate reading everyone's experience.

[sgerrard]

McFlorida:
Fun, isn't it? Not...
   One thing you will sooner or later realize, as you talk to all the docs, and do you research here and on the web, is that you have suddenly been appointed "chief medical decision maker for McFlorida", a title you probably didn't ask for.  You can find a doctor who will suggest Observation, another recommending Radiation, and another telling you Surgery, or maybe one who will suggest all three. In the end, you get to decide.
   It seems weird to me that the medical community has not worked it all out already, and that they leave it up to us, as if we knew what we were doing.  But, at least things are much better than 60 years ago, when survival was still the key issue.  I certainly have some days where the hearing loss and cricket chorus seem much easier to deal with than all this medical mumbo jumbo and anxiety.
Steve

[Larry]

McFlorida,

You will have to make the ultimate decision - my advice is more theoretical because i get too cynical with this debate coz I think the recommendations made to you by the medico's will largely be based on dollars - sorry if that ofends anyone  but surgeons have to live, radiologists have to live (they live well but still.)

First decide - can i observe? if you can handle the an in your head and there are no real issues from it, then fine - watch and wait. If you can't, and a lot can't, then surgery or radiation. Both have plusses and minuses which have been well documented on this forum. At the end of the day, go with the one that you think will be best. Absorb the advice you get but remember, the medicos are a business and if you had a service to sell, you wouldn't tell someone to go to your competitor would you?

Laz

[Windsong]

For myself, I can't imagine dollars are in a doctor's head when "promoting" a treatment suggestion whether it's for surgery or radiation.... if I was a specialist with specialized training and knew what I did was a sound approach for treatment and could do it well, i'd be "promoting" it....the work is far too demanding, specialized and takes years to get there to go in with the thinking of this is money for me.... it would be the rare doctor i think who doesn't think in terms of " i can help this patient and want this to go well "...... my two cents...