RE: NF2-unbelievable trip to ER

[Guest guest]

----- Original Message ----- From: mybear7980@...

Do you know what they wanted to do? Put me on decadron and send me home. That's it. "With a person like you who has so many brain and spinal tumors there is no way to know which one is causing the problem, so we will treat you with decadron and see if that helps."

============

I'm not sure how this post will sound, but I've heard that alot myself, Kari, by some well-known surgeons too. I know it's tough to hear, mind-numbing in fact, but Drs sometimes honestly DO NOT know, and they took an oath... "at first do no harm", so they do the best they can to help you stay comfortable. If they are certain of the cause of the pain, sure they'll yank that tumor out. The words sting, I know, bc I'm at that point right now myself. Currently my legs are dying on me, I'm dragging what feels like sacks of cement, and at times I find it very painful to even stand on my feet in the mornings. An MRI shows "over a dozen in my lumbar alone" ... and more then that higher up. Unless I want to spend the rest of my life in a hospital bed getting cut ("Could it be this one... let's try this one?"), I'm on medication to remain comfortable, hoping I can find a drug to stop everything in it's tracks before long. It's funny how we joke on this list how Drs try to play God... but then we actually expect them to do just that when we hurt.

Big hugs... I hope they will eventually find a way to help you, Kari.

Jennette

[Guest guest]

Hey Kari,

I'm sorry you're having problems right now and strokes do suck! It's funny

that I read your bio before when I first got Gamma Knifed by Dr. Duma 5

years ago at Good Samaritans Hospital. However though, he and I had a

falling out when I chose to go to UCLA instead of him. So with that said,

next time you see him, give him the finger for me! =P

Mark

----

Dr. Duma, he works out of Hoag Hospital and is going to do the Gamma Knife.

He said just get to my office on Monday and we will work it out. He hasn't

been paid for treating me since he did my first Gamma Knife 10 years ago,

and

that one was a battle too. He has kept up on all of my MRI's and see's me

without payment because he knows that my HMO won't let me see him. I don't

know what Dr. has against him. All the other doctors can't believe

that there is a problem. But they all play golf on Friday's. It's still the

buddy system.

Thank you for letting me get this off my chest. I am home right now. The

hopsital sent me home. For the first time, I didn't want to leave the

hospital because I'm scared. Unbelievable, huh?

Kari

_________________________________________________________________

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[Guest guest]

Hey Kari,

I'm sorry you're having problems right now and strokes do suck! It's funny

that I read your bio before when I first got Gamma Knifed by Dr. Duma 5

years ago at Good Samaritans Hospital. However though, he and I had a

falling out when I chose to go to UCLA instead of him. So with that said,

next time you see him, give him the finger for me! =P

Mark

----

Dr. Duma, he works out of Hoag Hospital and is going to do the Gamma Knife.

He said just get to my office on Monday and we will work it out. He hasn't

been paid for treating me since he did my first Gamma Knife 10 years ago,

and

that one was a battle too. He has kept up on all of my MRI's and see's me

without payment because he knows that my HMO won't let me see him. I don't

know what Dr. has against him. All the other doctors can't believe

that there is a problem. But they all play golf on Friday's. It's still the

buddy system.

Thank you for letting me get this off my chest. I am home right now. The

hopsital sent me home. For the first time, I didn't want to leave the

hospital because I'm scared. Unbelievable, huh?

Kari

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Totally sad Kari:( I wish I was there to give you a hug!! You need one for sure. I wrote to Dr Duma myself when I was investigating Gamma. He is such a cool guy!! He wrote right back to me and answered all my Qs:) I always have a lot!! Please take care, we are all ears here on the crew, shoulders to if you need:)~~Lowi:)

NF2-unbelievable trip to ER

hi Crew, I don't even know where to begin. The first thing I have to say is Thank good ness you all understand what happens to NF2'ers. The frustration of not getting the proper treatment or no treatment to say the least is wrong, scary and just has totally crushed my spirit.

[Guest guest]

Kari,

My heart goes out to you. I wish I could hug you and make all your pain

go away. And if I couldn't do that I wish I could at LEAST comfort you

and whisper in your ear, " everything is going to be all right. " I really

wish I could....

JD in AZ

PS: What's decadron?

[Guest guest]

Not in Australia it's not Shane had major swelling after surgery and got nothing for it......... and now has a leak as well...............

>From: "CrystalBuzz"

> >Decidron is an Anti-swelling steroid. It is given EVERY time there is major >surgery. or swelling. > > >Kari, >My heart goes out to you. I wish I could hug you and make all your pain >go away. And if I couldn't do that I wish I could at LEAST comfort you >and whisper in your ear, "everything is going to be all right." I really >wish I could.... >JD in AZ > >PS: What's decadron? > > > >

[Guest guest]

Nor in CANADA

Marnie

At 12:43 AM 6/24/01 +0000, you wrote:

>Not in Australia it's not Shane had major swelling after surgery and got

>nothing for it......... and now has a leak as well...............

>

> >From: " CrystalBuzz "

> >

> >Decidron is an Anti-swelling steroid. It is given EVERY time there is major

> >surgery. or swelling.

> >

> >

> >Kari,

> >My heart goes out to you. I wish I could hug you and make all your pain

> >go away. And if I couldn't do that I wish I could at LEAST comfort you

> >and whisper in your ear, " everything is going to be all right. " I really

> >wish I could....

> >JD in AZ

> >

> >PS: What's decadron?

> >

> >

> >

> >

[Guest guest]

Decidron is an Anti-swelling steroid. It is given EVERY time there is major

surgery. or swelling.

Kari,

My heart goes out to you. I wish I could hug you and make all your pain

go away. And if I couldn't do that I wish I could at LEAST comfort you

and whisper in your ear, " everything is going to be all right. " I really

wish I could....

JD in AZ

PS: What's decadron?

[Guest guest]

Kari, I feel for you. Thats the exact reason i wud not go to E room unless I was

severly having probs, numbess on one side might make me though. I had an

internist, an Arab, he was clueless abt nf2, he WAS interested though but I

think i was a novelty to him. Can I ask you why you are opting for gamma

instead of surgery? surgery too risky?

cindy

CrystalBuzz wrote:

> Decidron is an Anti-swelling steroid. It is given EVERY time there is major

> surgery. or swelling.

>

> Kari,

> My heart goes out to you. I wish I could hug you and make all your pain

> go away. And if I couldn't do that I wish I could at LEAST comfort you

> and whisper in your ear, " everything is going to be all right. " I really

> wish I could....

> JD in AZ

>

> PS: What's decadron?

>

>

[Guest guest]

I have recieved decidron after every surgery sence 1984. And they told me

it is a must. Because I have a very strange reaction to decidron,

(Spititual) Lets not get into this again. :-)

Nor in CANADA

Marnie

At 12:43 AM 6/24/01 +0000, you wrote:

>Not in Australia it's not Shane had major swelling after surgery and got

>nothing for it......... and now has a leak as well...............

>

> >From: " CrystalBuzz "

> >

> >Decidron is an Anti-swelling steroid. It is given EVERY time there is

major

> >surgery. or swelling.

> >

> >

> >Kari,

> >My heart goes out to you. I wish I could hug you and make all your pain

> >go away. And if I couldn't do that I wish I could at LEAST comfort you

> >and whisper in your ear, " everything is going to be all right. " I really

> >wish I could....

> >JD in AZ

> >

> >PS: What's decadron?

> >

> >

> >

> >

[Guest guest]

Kari,

So sorry to read your post and discover what you are going through. I don't

blame you for the fear. Wow. One side of your body numb plus the other

stuff. I hope Dr. Duma can help you on Monday. You have my very best

wishes. Hugs, Vicki

[Guest guest]

Jennette,

It seems that Anne has the same condition as you in her spine. We are hoping

for some intervention treatment to slow things down. Do you have anything in

mind that is being used or will be used for you? Thanks, Vicki