This is part of a series around the struggles some CP's are having with pain
and spinal problems.  We need greater urgency from ourselves and our doctors
when necessary to do corrective surgery on our spinal columns and/or cords
before we become significantly paralyzed.

What follows is a conversation introduced by my friend's permission for me
to publish.

Anyone posting useful suggestions, please email me a copy.

Thanks in advance.    :-)

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Good man.

I'm wrecked.  Been on line most of day.  Little else.

S.
----- Original Message -----
From: <Al>
To: <[log in to unmask]>
Sent: Monday, December 18, 2000 1:52 AM
Subject: Re: 2nd Revision


> Steve:
>
> This is fine.... Roll it on....
>
> Spent all of Saturday in bed...    Felt a little better on Sunday...
>
>                                    A
>

ORIGINAL "A" CREATED: December 16, 2000, 1:02:33 AM  Text Edited to focus on
medical issues and preserve privacy.


"ISM" (12:27:21 AM): What's up with the docs?

"A" (12:35:04 AM): Same old --- "hurry up and wait" situation. I told my
primary doc about my increasing pain in my neck... gave me a third med that
is supposed to help with the nerve pain --- but it'll take time for it to
build up... a week. Meantime, K said that he thought I did have a
neurological exam ...going to double check my chart. He did get a request
from the surgeon for a neuro exam...

"A" (12:43:39 AM): Today the pain is exceptionally bad!
I do have an exam on Tuesday for an ear/noise and throat that is part of the
surgery.. With the pain I'm experiencing right now... I almost want to go to
the hospital and ask them to put a new neck in now.

"ISM" (12:45:10 AM): This is taking 2 long. I don't know why you don't call
a neurosurgeon and talk about things.
"ISM" (12:49:39 AM): Did u ask ur GP if he will assume liability if you go
into surgery neurologically damaged?

"A" (12:50:29 AM): I wouldn't know whom to call and whom to get
quickly...And who's at Jefferson...And my surgery is set for Feb 1, which is
for me too long... So I don't know what to do...They are trying to get the
surgery moved up... AND I want my doc to be part of the team....

"ISM" (12:52:16 AM): Well I just don't want u to wind up with cord damage
like I did.

"A" (12:57:37 AM): The MRI clearly showed that I have a blockage in my
cord... And that's what they are getting at.
Meantime my brother wants me to move in with some one for the period before
the surgery.. What's your thinking on this?

 "A" (12:58:58 AM): Still - I'm not sure what to do...except I want this
game over with.

"ISM" (12:59:19 AM): Ur gonna need help, for sure. And what about finances?

"ISM" (12:59:48 AM): Obviously ur.won't take u in, eh?

"ISM" (1:01:16 AM): What about Rehab?

"A" (1:03:31 AM): I'm not sure what to think at this time... I guess I am
gonna have to spend down.... ugh... I'm trying to catch up with the bills
I'm getting now.

Rehab...after surgery.that's been set.three days in the hospital...six to
eight weeks in rehab...

"ISM" (1:04:50 AM): 6-8 should be enough time to see what you'll be able to
do when you get "home."



"A" (1:05:16 AM): My---won't take me in.same old story.I know so many
people.  Was joking tonight with J that his dog "H" could care for me.

"A" (1:07:53 AM): Still it's frustrating... And I do have a "family" at
the...
"A" (1:09:12 AM): But I am so overwhelmed I'm not sure what to do at this
point... Tell me ... what should I do...

"ISM" (1:09:35 AM): Well...I'm still on my "own." Couldn't do it without
neighbors and deliveries, house cleaner.

"ISM" (1:09:45 AM): What to do?

"A" (1:11:21 AM): Yes... to do?

"ISM" (1:11:54 AM): It's a little late to think clearly.
"ISM" (1:12:24 AM): I'm still thinking about getting you in for neurosurgery
asap.  Monday I'll call my physiatrist for an appointment and see if he'll
talk to me about you. I'm sure he can give some advice.

 "A" (1:16:00 AM): OK... You mean as opposed to the cervical spine surgery?

"ISM" (1:16:52 AM): Not opposed. A matter of neuro-ortho. Can you tell the
difference?
"ISM" (1:17:11 AM): Maybe both should be there.
"ISM" (1:18:27 AM): The difference form my perspective is that your present
docs aren't moving fast enough to save ur spinal cord. A neuro could make
that call.

"A" (1:18:45 AM): Neuro-orthopedic? It's taken six months to get this far
and I have no idea how it's gonna be speeded up.. rgat

"ISM" (1:19:27 AM): It takes a long time when there's no emergency.

"A" (1:21:00 AM): So, how to make this an emergency? If I call the
neurosurgeon... it'll take at least three months to get an appointment.

"ISM" (1:21:00 AM): Your playing with orthos. A good neuro should move
faster to save the cord from damage. I'd hope.
"ISM" (1:21:53 AM): Why 3 mos? Tell him/her its urgent. You're getting
weaker and paralyzed.
"ISM" (1:23:45 AM): You think it's myelopathy accelerated by CP and you may
lose your arms and legs permanently.

"A" (1:24:02 AM): Do I go to the ER?? Last time that happened they kept me
waiting six hours...

"ISM" (1:24:44 AM): If you feel sick enough.
"ISM" (1:25:57 AM): Call a neuro and ask if he can see you asap or should
you go via  ER



 "A" (1:32:24 AM): WHO DO I CALL?? THAT S THE QUESTION!

"ISM" (1:34:48 AM): Told u what I'll do Mon. Recall my Doc saying there's a
fine neuro at Penn, to whom I'll probably go too. Meantime check the Yellow
Pages, ask around.

"A" (1:35:07 AM): Why don't we call it a night. We both need rest and I
can't
do this alone.. Maybe I'm a big baby but I really need some leads.
"A" (1:35:53 AM): And that will still take a while....

"ISM" (1:36:12 AM): Ur in a tough spot and overwhelmed.  I'll do what little
I can.