From:      bounce-scoliosis
To:        scoliosis-digest@ai.mit.edu
Subject:   scoliosis V1 #507
Reply-To:  
Errors-To: bounce-scoliosis
Precedence: bulk


scoliosis                   Sunday, 20 July 1997        Volume 01 : Number 507


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From: Jeanbivins@aol.com
Date: Sat, 19 Jul 1997 08:48:11 -0400 (EDT)
Subject: Re: Jean & Tom

Erin is not having surgery yet.  We are trying to decide on that now.  The
mailing list has helped.  It sounds like there are a lot of people who had to
have the surgery at an older age who wish they had it when they were younger.
 Did you decide to have the surgery because of the pain or was it because the
curves were getting worse.

Tom & Jean Bivins

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------------------------------

From: Paul Leger <legerpj@nbnet.nb.ca>
Date: Sat, 19 Jul 1997 11:10:46 -0300
Subject: RE: increasing curve

Well the operation goes like this. They break the old fusion apart. Pull out 
all the old hardware. Then they re-fuse the spine again. They go through the 
front and back at the same time to do this.

The number one problem is that you stand a chance of being paralysed by this 
procedure. The number two problem is that there is really no guarantee that 
when all is said and done that it really works to correct the problem. Every 
time you have surgery on your back you increase the chances of further 
complications like pain. The operation is only performed in the United States 
at the moment. The consensus here amongst the orthopaedic surgeons in Canada is 
that this procedure will not work and has far too many risks.

Paul Leger
Hampton, NB, Canada
Amateur Callsign VE9NC


- -----Original Message-----
From:	FrancescaH@aol.com [SMTP:FrancescaH@aol.com]
Sent:	July 19, 1997 12:22 AM
To:	scoliosis@ai.mit.edu
Subject:	Re: increasing curve

Paul --

Just wondering... what does the repair surgery entail?  what are its promises
and what are your worries?

- -Francesca

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From: HSIUNG@ccsua.ctstateu.edu
Date: Sat, 19 Jul 1997 11:03:39 -0400 (EDT)
Subject: Re: Jean & Tom

Tom and Jean,

i had the surgery because my curves were getting worse. i never really felt
pain in my back. my worst curve was up to 51.

Sue

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From: Luke Brown <lbrown@exodus.jwu.edu>
Date: Sat, 19 Jul 1997 11:50:42 -0400 (EDT)
Subject: RE: increasing curve

please this messages to me, enroll me off of your mailing list please.

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------------------------------

From: Cathleen Thompson <cathy@frontiernet.net>
Date: Sat, 19 Jul 97 11:55:16 -0400
Subject: Re: Jean & Tom

> Did you decide to have the surgery because of the pain or was it because the
>curves were getting worse.
>
At the time I discovered I wasn't too old for the surgery, I was unable 
to straighten to a standing position, had extreme pain everytime I walked 
any distance (including from my living room to my bedroom in a small 2 
bedroom apartmnet) I had to make a choice between surgery and  life in a 
wheelchair. Scoliosis is a rotten little disease...you think you are 
doing fine and YOU are the exception to the rule and then it attacks. 
It's much better to have the surgery long before it does because you will 
be in better physical shape.  Now in addition to the normal pain from the 
surgery, I am using muscles that have been idle for years. And that's 
BEFORE I start physical therapy. 

Cathleen Thompson


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From: KrashLoad@aol.com
Date: Sat, 19 Jul 1997 17:16:38 -0400 (EDT)
Subject: Re: Jean & Tom

Jean and Tom,

I am having the surgery because experienced back pain, especially in the
winter.  I don't knoww if the winter pain is in everyone's case but it was
present in mine.  My curve also increased a deal over the last few years.  I
believe that the time is right for me to do it now instead of waiting.  I
have stopped growing and have a severe curve and I thought this was the best
solution for me.

Allison

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From: Peggy <mclay@concentric.net>
Date: Sat, 19 Jul 1997 18:39:30 -0700
Subject: Re: Dr. Keith Bridwell

Emily,

The young girl on the Copes exercise video that was sent to Natalie is a
girl that was very involved in dance. You might want to check into this
program since you feel that surgery is out of the question.  The
chiropractor that is treating Natalie said he saw before and after video
of this young girl and the change in her was remarkable.  Ask someone at
Copes office about her maybe she will correspond with you and let you
know what she went through.  Im sorry I dont know her name.  But she is
the one that 
demonstrates the Copes prescribed exercises.

Good luck.

morgan_e@cc.denison.edu wrote:
> 
> I have been a patient of Dr. Bridwell's for approximately three years.
> I'm not sure how much I can say about him, because I was only fifteen when
> I began to see him.  My mom did a lot of looking, and we saw one other
> doctor in the St. Louis area.  We weren't too impressed with him.  My
> thorassic curve is approximately 32 and my lumbar curve is about 44.  I
> wore a brace for two years (age 13 to 15) and Dr. Bridwell has told me
> that we will watch my back for pretty much the rest of my life.  I believe
> Dr. Bridwell is highly regarded by the scoliosis population.
> 
> I would also like to tell everyone my situation.  I have been reading the
> postings for almost half a year, and I have yet to see anyone in my boat.
> I am an eighteen year old college student double majoring in dance and
> communication.  I have been dancing since I was four years old, and I plan
> to pursue a career in dance if possible.  Because of this any type of
> surgery would be out of the question for me.  I experience some amount of
> back pain, but I believe a good portion of it is due to my dancing.  I
> guess I was wondering if there are any more dancers out there who share
> the same frustrations as I do.  I would never dream of stopping to dance,
> and if I had to have surgery, the moving I do would be impossible.  Thank
> you for "listening" to me.
> --Emily
> 
> For help on using this list (especially unsubscribing), send a message to
> "scoliosis-request@ai.mit.edu" with one line of text: "help".

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------------------------------

From: LJF541@aol.com
Date: Sat, 19 Jul 1997 19:59:05 -0400 (EDT)
Subject: A young man's experience.

I have written to you all once before.  I decided that maybe my son's
experiences could be beneficial to someone so here is his story.  

Todd was diagnosed with scoliosis at 5 yrs old.  Through the next 7 years he
went to a chiropractor, lifted weights, did exercises and stretches, and wore
a brace everyday for 3 years.  In Aug 96, age 12 his thoracic curve had
progressed to 55.  Surgery was scheduled for Nov 96.  At his pre-op visit he
was sick and his curve measured 74.  Surgery was postponed and many tests
were run on him to make sure nothing else was causing his progression.
 Everything was fine besided the idopathic scoliosis and surgery was
scheduled for Feb 97.  Again he was sick and surgery was rescheduled for
April 97.  In April his curve was at 85.  Through all this time he had never
had any pain and was extremely active playing all sports non stop.

Surgery was done April 23, 97.  He had an anterior release with fusion and a
posterior release with hooks and rods.  He had been in surgery for over 11
hours when we were informed that Todd had become paralyzed from the waist
down and they were removing the rods and closing him up.  He was put in TICU
and within a few hours was able to move his toes on his right leg.  Good
sign.  He was kept very drugged and two days later he could not breathe and
was put on a respirator.  He had a hole in his lung caused from surgery but
for some reason it wouldn't close.  He had 3 chest tubes and these weren't
helping.  He was not allowed to move at all because his spine was so
unstable.  Slowly over the next 3 weeks everything became better.  He was
breathing on his own and able to move his legs.  He was taken out of ICU.  A
week later he was put in a body cast.  One month from the time of surgery.
 He had lost 30 lbs.  To begin with he was 5'7" and weighed 127 so he had
nothing to lose to begin with.  All of his muscle was gone.  He started out
slowly being able to even stand.  After 5 weeks he was sent home.  During
this time he had physical therapists coming 4 times a week and after 2 weeks
he was able to walk 3-4 blocks at a time.  He was very weak and unsturdy but
very determined.

He had a check-up after 2 weeks and the body cast that had his back held at
45 had not worked and his curve was back to 75.  He had a very bad pressure
sore caused from the cast (which is still trying to heal 6 weeks later) and
had to have another cast put on.  This still didn't work.  He was scheduled
for another surgery June 26, 97.  He spent 8 days in the hospital.  Rods were
put in and thank God, it worked this time.  His curve is at 58 but he is up
walking around and on the road to becoming himself again.  His lungs are
still very weak and the dr says it may take 1-2 yrs to be able to breathe
well again.  Also, it will be at least a year for him to get his strength
back.  He has had to learn to walk again and also has to do exercises and
stretches everyday to try and get motion and strength back throughout his
body.

I've talked to many drs. and no one knows exactly what happened during his
surgery.  He had 2 spots on his MRI that show spinal cord damage and we are
not sure what that means for Todd.  Nor do the drs.

I didn't send this to scare anyone although I'm sure it may.  Just thought it
could possibly help someone.

Lori Fulmer

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------------------------------

From: Genene <gsoul@mindspring.com>
Date: Sat, 19 Jul 1997 21:40:26 -0500
Subject: girl in Copes video

Emily and Peggy,

I believe the girl's name is Kiley Nickens, or something like that!  I 
just saw the videos a few days ago.

Genene

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------------------------------

From: Jim Fisher <fisherfamily@worldnet.att.net>
Date: Sat, 19 Jul 1997 20:50:16 -0700
Subject: Re: Stephanie's Story

Facing the Brace
- ----------------

About 4% of the general population has scoliosis and most of them are
female.  About 70% of those cases will progress without any sort of
treatment.  About 60% of the time bracing is effective at halting
progression of the curvature and is, therefore, the treatment of choice
for most scoliosis patients.  So what can you do as parents when your
daughter has been diagnosed with the condition and is facing the
prospect of wearing a back brace during all of her formative junior high
and high school years? During a time in their lives when looks are
everything, how do you convince her that a klunky plastic girdle with
steel bars is worth wearing to avoid back surgery (and that it's more
important than boys)?

There are no easy answers, but here are a few things that worked for
us.  With Stephanie, I asked around until I found a young lady who had
worn a brace with success.  I arranged to have her meet Stephanie over
lunch and talk about ways to deal with the situation.  Having Stephanie
meet a young, attractive, woman who was successful and happy after
"going through" scoliosis was a great help.  She was able to answer all
of Stephanie's questions and even joke about how she gave her brace a
name (it was "Bruce").  She said as long as this thing was going to hug
her all day, it might as well be a boy.

Finding someone with a "cured" scoliosis condition was not as difficult
as I thought it might be (it's about 24 women out of 1000).  I suggest
asking around at church or talking to the teachers at school.  Any
teacher who has been instructing teens for more than a few years has
encountered at least one of them with scoliosis.  Find one that can
point you to someone who had it ten years ago and make a few phone calls
to the parents.  In my case, I found one contact in a room of about 30
men at a church gathering.  Later I found out that one of Stephanie's
teachers had scoliosis as a child.  

It also helps to compare the brace to braces on your teeth.  "Some
people are born with crooked teeth and need to have them straightened
with braces. You were born with a crooked spine and wearing this brace
will help straighten it out."  This logic doesn't work for me as an
adult, but for some reason, it works for the kids. 

Stephanie said the best thing is to be informed (both as the parent and
the child).  Read "The Scoliosis Handbook" together.  Get on the
internet and search for all the alternatives.  Find out what the
"penalties" are for not wearing the brace faithfully and be honest about
the chances of surgery and the effectiveness of bracing. Twelve and
thirteen years olds are just starting to emerge from the
"white-or-black" and "yes-or-no" reality of a child and into the "gray"
and "maybe" world of an adult.  They are just beginning to understand
probabilities.  Work with them and be patient.  Don't expect or demand
perfect compliance.  The future for them extends only a week or two into
the future.  Talking to them about decisions they make now which can
affect them ten years from now is a little like trying to explain a
microsecond (or a parsec) to Galileo. He would be capable of
understanding the concept, but it would take a long time and a lot of
patience.

When I discuss brace wearing compliance with Stephanie, I point out that
in all other situations I will let her make decisions (and make some
mistakes) as a child.  There is only one time I will expect her to make
decisions as an adult, and that's when she decides to wear her brace or
not. I don't want to be the "bad guy" because I am too easy to deceive. 
She can fight me, but she can't fight the odds.  If she doesn't wear it,
the odds are 7 in 10 that she will have her back fused by surgery. I
point out that in a few years she will be expected to make more and more
adult-level decisions when driving a car, choosing not to drink, and so
forth.  For now I only ask that she do the one thing in her life that
rings of "adulthood". 

I often have the urge to say "If you don't wear the brace, we might as
well schedule you for surgery.  At least insurance will pay for that!"
But I don't like the guilt and shame that accompanies the message.  I
also don't want to imply that faithfully wearing the brace automatically
means you won't have surgery.  Doing so would be deceptive.

Overall, facing the brace requires a healthy dose of humor.  In the
posts that follow, Stephanie shares some of her best reasons and
excuses.  We hope you find them entertaining and helpful. Please add to
them as you wish.


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------------------------------

From: FrancescaH@aol.com
Date: Sat, 19 Jul 1997 23:31:49 -0400 (EDT)
Subject: How do you make a decision so important?

hi Paul ---

I thought that was what they would do to you -- but I didn't want to assume.
 There is some, um, anger towards people who "promote" surgery because they
have had successful experiences.  If I must be lumped in a group, I would be
included in what I went through. 

I had the same surgery as you described, and I just want to let you know that
I'm okay and happy I did it.  I am young... 20... and I couldn't imagine
living with the pain and the high possibility I would be paralyzed later in
life WITHOUT the surgery.    I want children, and want the least complicated
life as I can imagine.  

Now as I take the rose-colored glasses off, I had the surgery April 3, and a
day before I was to leave, April 9, my back shifted while I was walking in
the hospital.  I stood motionless, while my mother and 2 friends walking with
me kept walking a few steps before they realized I wasn't alright.  I took 4
or 5 painful/unsteady steps to a nurses station chair and someone brought me
a wheelchair.  The feeling I had?  an extreme sharp pain in the middle of my
back, numbness in one leg.  As it was found out later, one of the osteonomies
(the breaking of the back you explained)  gave way.  It didn't even show in
X-rays because the hardware was there to hold the back together, but the pain
was awful.  A few weeks later I had a 2nd surgery to correct the problem and
now have a 3 degree curve though 12 vertebrae fused.  

Paul, also I want to explain, before I had the surgery, my doc consulted with
many other specialists (including David Bradford of UCSF) and they concurred
on the manner of correcting my problem...  though it seems that my surgery
has only been done a couple dozen times here in the U.S.

I just wanted to let you know of all of this because I understand what you
are going through, though I'm sure no one has walked in your shoes.  I just
want to suggest you see an American specialist or a Canadian specialist who
doesn't have any problems consulting with some American doctors who have
performed this surgery.  I suggest David Bradford (as at least as a
consultation) specifically since he is known to be the best of the best in
the country.

I hope you don't consider me too pushy, but I appreciated many suggestions
when I was trying to figure out what to do, and hope you do too.

- -Francesca

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------------------------------

From: Jeanbivins@aol.com
Date: Sun, 20 Jul 1997 01:10:40 -0400 (EDT)
Subject: Re: Teen List?

I would like to clarify myself. Though the stories on this mailing list can
sometimes be frightening, I would just like to thank everyone who contributes
to this list.  As parents, Jean and I are going to have to make the hard
decision on whether our daughter should have surgery.  Whether they are
stories from people who have lived good lives with or without surgery. There
is no way that any doctor or book could give us help as this list has.  By
sharing your good and bad experiences, all of you have helped to prepare us
for what our daughter is going to experience in her life.  

Again, Thank you.  
Tom and Jean Bivins
Orlando, Florida
Daughter, Erin, has a 49/41 double curve.


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------------------------------

End of scoliosis V1 #507
************************

