From:      bounce-scoliosis
To:        scoliosis-digest@ai.mit.edu
Subject:   scoliosis V1 #1309
Reply-To:  
Errors-To: bounce-scoliosis
Precedence: bulk


scoliosis                Tuesday, 7 September 1999     Volume 01 : Number 1309

Today's subjects for scoliosis, scoliosis-medical, scoliosis-child
and scoliosis-teens:
  Re: Kara                             ["m.stelzer" <m.stelzer@mciworld.com>]
  Re: Heat in left leg----to Nancy Birch        ["*" <delirium@getaway.net>]
  ?DVT                                        ["Sanette" <modimo@cyberus.ca>]
  Re: New Book                                            [Mad4boyds@aol.com]
  [none]                                             ["SLN" <sniss@toad.net>]
  ?DVT                                                     [Mollyp70@aol.com]
  gymnastics                             [Cara Detrick <soph4ever@yahoo.com>]
  Re: gymnastics                        [sage macleod <smacleod13@yahoo.com>]
  peeps                                        [Vaiden Bowen <bowen@cfw.com>]
  Re: what's a triple curve called?   [Sylvia Bringas <sylbri46@pacbell.net>]
  Re: motrin post fusion        ["Stephen Jaskulek" <jaskulek-scol@home.com>]
  Re: peeps                                              [Sunflwrbjs@aol.com]
  Re:                                                    [BoxtEnigma@aol.com]
  Re:Re: Kara                         [kelly drake <meadville_mom@yahoo.com>]
  Re: Surgery                                            [MoodyCow86@aol.com]
  Re: peeps                                   ["Nikki :" <nikki412@juno.com>]
  Re:                             [Kaylin Morrissey <mchip@worldnet.att.net>]
  Re: motrin post fusion  ["Joseph Boatman" <Joseph.Boatman@worldnet.att.net]
  I'm new to the list     [+ r e d + o n + w h i t e + <pjaic@globalbiz.net>]
  Re:peeps                               [Cara Detrick <soph4ever@yahoo.com>]
  Re: Surgery                                             [Bluebonne@aol.com]
  Re:re:surgery                          [Cara Detrick <soph4ever@yahoo.com>]
  Nerve regeneration                                       [Mollyp70@aol.com]
  Re: Nerve regeneration           [Linda Racine <lindaracine@earthlink.net>]
  Re: motrin post fusion                                  [CarolPerk@aol.com]
  Motrin and fusion - Con't                               [CarolPerk@aol.com]
  to jenn                                [Cara Detrick <soph4ever@yahoo.com>]
  Re: to jenn                                              [Mercy106@aol.com]
  Re: Nerve regeneration                                 [VSlaybaugh@aol.com]
  Re: I'm new to the list                                [BoxtEnigma@aol.com]
  Re: Nerve regeneration           [Linda Racine <lindaracine@earthlink.net>]

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

From: "m.stelzer" <m.stelzer@mciworld.com>
Date: Mon, 06 Sep 1999 10:32:45 -0500
Subject: Re: Kara

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Carmell:

Great explanation about Kara's brace. I really learned something and it =
makes me wonder about Spencer's brace. Even though it's on "just for =
protection" I imagine it too is teaching his muscles to hold his spine =
straight. Since he's "learning" this at such a young age, I hope that =
his muscles can remember this positioning throughout his life. Your note =
gave me a whole new appreciation of the much-hated (by me) brace. =
Thanks!!

Margie

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<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>Carmell:</FONT></DIV>
<DIV>&nbsp;</DIV>
<DIV><FONT size=3D2>Great explanation about Kara's brace. I really =
learned=20
something and it makes me wonder about Spencer's brace. Even though it's =
on=20
"just for protection" I imagine it too is teaching his muscles to hold =
his spine=20
straight. Since he's "learning" this at such a young age, I hope that =
his=20
muscles can remember this positioning throughout his life. Your note =
gave me a=20
whole new appreciation of the much-hated (by me) brace. =
Thanks!!</FONT></DIV>
<DIV>&nbsp;</DIV>
<DIV><FONT size=3D2>Margie</FONT></DIV></BODY></HTML>

- --Boundary_(ID_vID9jCjup2SyIRSqvPX5EA)--



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From: "*" <delirium@getaway.net>
Date: Sun, 05 Sep 1999 21:03:47 -0500
Subject: Re: Heat in left leg----to Nancy Birch

DOES the sympathetic nerve regenerate? I was told that it would not if
it was severed -- a necessity for anterior incisions in the lumbar
area.  Can anyone confirm this for me?
- --hmc.

Jeff + Nancy Kennedy wrote:

> Hi Nancy,Just wanted to respond to your comment on the heat in your
> one leg. Before my daughter had her surgery in June her surgeon
> explained that her one leg would be redder and hotter than the other.
> ...





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From: "Sanette" <modimo@cyberus.ca>
Date: Mon, 6 Sep 1999 09:21:15 -0400
Subject: ?DVT

Just one more thing on a hot and painful leg....while still in hospital, or
even at home, this can also be a symptom of DVT (Deep Vein Thrombosis), so
be careful not to selfdiagnose and always tell your dr/nurse about this.

"Nancy Birch" <nwbirch@hotmail.com> wrote:
........after my last op, my left leg was
hot and painful - you could feel the heat radiating from it.....






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From: Mad4boyds@aol.com
Date: Mon, 6 Sep 1999 12:12:31 EDT
Subject: Re: New Book

btw - I just received notice from Amazon that the book has shipped.

Donna



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From: "SLN" <sniss@toad.net>
Date: Mon, 6 Sep 1999 12:46:15 -0500
Subject: [none]

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Hi! I want to take gymnastics but the class is an hour long I really =
want to take it.Do you think I might be able to!
Judy sniss@toad.net


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<DIV><FONT color=3D#000000 size=3D2>Hi! I want to take gymnastics but =
the class is=20
an hour long I really want to take it.Do you think I might be able=20
to!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Judy <A=20
href=3D"mailto:sniss@toad.net">sniss@toad.net</A></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV></BODY></HTML>

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From: Mollyp70@aol.com
Date: Mon, 6 Sep 1999 13:12:40 EDT
Subject: ?DVT

Not to frighten anyone, but I agree with Nancy on the importance of reporting 
symptoms to your Dr.  
I had a  large DVT develop from my hip to my knee, at home 5 weeks after my 
fusion. My affected leg "blew up" seven inches larger than the other one 
- -overnight!  As you probably know, this can be a life-threatening condition. 
So, I was back in the hospital for a few weeks, and on anti-coagulant therapy 
for another 6 months.  Fortunately, this is not a common complication with 
today's surgeries and the treatments used to prevent DVTs.
mp

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From: Cara Detrick <soph4ever@yahoo.com>
Date: Mon, 6 Sep 1999 11:38:33 -0700 (PDT)
Subject: gymnastics

Judy, I would think that gymnastics would be good
exercise and an hour out of the brace--well, how long
are you supposed to wear it?  Even if you had to wear
it 23 hours a day that would work out fine.
But I'd also like to recommend to everyone on here,
that if you have a question like that or about how
much time you can be out of your brace--call your
doctor.  They know for sure what works--we just know
what we were told for us, and it's different for
everyone.
So, my advice is to call your doctor to find out
things like that.
Cara
 :)

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From: sage macleod <smacleod13@yahoo.com>
Date: Mon, 6 Sep 1999 12:12:26 -0700 (PDT)
Subject: Re: gymnastics

Anybody
what type of exercise is recommend by your doctor for scoliosis?

- --- Cara Detrick <soph4ever@yahoo.com> wrote:
> Judy, I would think that gymnastics would be good
> exercise and an hour out of the brace--well, how
> long
> ...

===
Sage MacLeod from the clan MacLeod in the highlands of Scotland
                         peace & love
                              <O


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From: Vaiden Bowen <bowen@cfw.com>
Date: Mon, 06 Sep 1999 15:44:22 -0400
Subject: peeps

i had the brace for less than a yr and then my scolisis jumped up ten
degrees. so i must get the surgery later.

Does anyone have any ideas if there is anything I could have down to have
defeaten the jump???




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From: Sylvia Bringas <sylbri46@pacbell.net>
Date: Mon, 06 Sep 1999 12:33:05 -0700
Subject: Re: what's a triple curve called?

Hi to All on the List,

I am one of those with a triple curve and at times it can be a real pain in the
neck and other places.  As I mentioned before I had two Harrington rods put in in
1982 I was 36 at the time.  Last summer I went to see the current Scoli Doctor at
Kaiser on Eureka Road in Roseville, California.  I have lost an inch in height
and some of my correction, but can't complain.  I work, live a normal life and
bowl and travel for fun.  My son Pat
is 25 and is healthy with no problems so what more can I ask for.  I am very
thankful for each day.  You just have to be a little more aware of your body as
you get older.  This applies to everyone.  Take care and best wishes to you all.

Sylvia

Buttonjo@aol.com wrote:

> If a single curve is called a C, a double is an S, then what's a triple curve
> called? (yes, a curve in all three cervical, thoracic, and lumbar areas )
> Jolene
> ...




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From: "Stephen Jaskulek" <jaskulek-scol@home.com>
Date: Mon, 6 Sep 1999 16:27:07 -0300
Subject: Re: motrin post fusion

Linda,

    I looked over a few of the studies listed on Medline that dealt with the
effects of  nonsteroidal anti-inflammatory drugs (NSAID) on spinal fusions.
As you indicated in your message, the studies seem to show that use of
NSAIDs can significantly reduce the chace of having a good fusion form.
Needless to say, I have stopped taking an NSAIDs and plan to contact my
doctor (Kostuik) tomorrow about this.  I wish I had known about this
earlier!

    I am currious to find out how many patients on this list were aware of
this possible interaction.  If this is a well known and established effect,
it is suprising that I have not heard of it earlier (from my doctor or on
this list).  It would pretty depressing to find out that after all the steps
I have taken to insure a successful post-surgical outcome, something this
simple but significant causes a problem!  Either way, this whole thing shows
me once again how valuable this web list can be to us.

    I will post a message in the next few days with whatever information I
can get from Dr. Kostuik (or more likely his staff) on this matter.

Thanks again,

Steve
Columbia, MD

jaskulek@home.com





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From: Sunflwrbjs@aol.com
Date: Mon, 6 Sep 1999 17:09:32 EDT
Subject: Re: peeps

Well, You are probably going through a growth spurt right now so that is why 
your degrees would have jumped.  I would recommend that you keep wearing your 
brace even though you don't have to any more since you are having surgery.  
That way you can maintain your curves from growing way fast. I hope I helped 
Bethany  

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From: BoxtEnigma@aol.com
Date: Mon, 6 Sep 1999 17:32:43 EDT
Subject: Re: 

Judy,
    I took gymnastics for a while. It's alot of fun, but can also cause some 
pain. Some light gymnastics at the noncompetative level probably won't do too 
much harm. But your doctor may not want you to take the risk. After all, 
jumping around for an hour can be dangerouse. Run it by him and follow his 
advice. If you decide to go ahead with it, be ready for some extra back pain. 
GOOD LUCK!
                                                -Sabriel

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From: kelly drake <meadville_mom@yahoo.com>
Date: Mon, 6 Sep 1999 14:55:40 -0700 (PDT)
Subject: Re:Re: Kara

- --- "m.stelzer" <m.stelzer@mciworld.com> wrote:
> Carmell:
> 
> Great explanation about Kara's brace. I really
> ...
Carmell and all--
     I have been very interested watching all of the mail talking about
the purpose of wearing the brace. My daughter's physical therapist told
us that it is to hold the spine straight to allow it to grow in the
proper position but that without physical therapy to strenghthen the
muscles they would atrophy or weaken because they are merely being
supported not used while Abby is in the brace. Any thoughts?

                                   Kelly Drake
            Mother of Abby 22 months diagnosed with Infantile
Idiopathic Scoliosis             
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From: MoodyCow86@aol.com
Date: Mon, 6 Sep 1999 18:33:28 EDT
Subject: Re: Surgery

I know this has nothing to do with a brace or much but did anyone have 
problems sitting at school after surgery because I'm kind of worried that I 
will have problems sitting for so long with those funny school chairs.

Ariana



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From: "Nikki :" <nikki412@juno.com>
Date: Mon, 6 Sep 1999 19:44:55 -0400
Subject: Re: peeps

need to get surgery. I suppose that your curve could have incresed for
many reasons and if you wore your brace faithfully, then you could not
have done anything to stop it from progressing. Sometimes the brace is
not enough to control a curve and it just doesnt work. I hope everything
goes well with your surgery.
	nikki

On Mon, 06 Sep 1999 15:44:22 -0400 Vaiden Bowen <bowen@cfw.com> writes:
>i had the brace for less than a yr and then my scolisis jumped up ten
>degrees. so i must get the surgery later.
>
> ...

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From: Kaylin Morrissey <mchip@worldnet.att.net>
Date: Mon, 06 Sep 1999 20:45:13 -0400
Subject: Re: 

yeah of course.
kk
nwa
smile

SLN wrote:

>    Part 1.1    Type: Plain Text (text/plain)
>            Encoding: quoted-printable




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From: "Joseph Boatman" <Joseph.Boatman@worldnet.att.net>
Date: Mon, 6 Sep 1999 20:11:02 -0500
Subject: Re: motrin post fusion

Linda - I take Celebrex which is one of the new NSAID.....and this was an
improvement over the Relafen that my old scholi dr. prescribed....it helps
w/the pain, but won't be worthwhile if it interferes w/surgery which I will
probably have in late Oct.  I plan to check out Medline and see if Celebrex
has the same effect. Thanks. Jennie
- -----Original Message-----
From: Stephen Jaskulek <jaskulek-scol@home.com>
To: scoliosis-medical@ai.mit.edu <scoliosis-medical@ai.mit.edu>
Date: Monday, September 06, 1999 7:33 PM
Subject: Re: motrin post fusion

>
>Linda,
>
> ...
the
>effects of  nonsteroidal anti-inflammatory drugs (NSAID) on spinal fusions.
>As you indicated in your message, the studies seem to show that use of
>NSAIDs can significantly reduce the chace of having a good fusion form.
> ...
steps
>I have taken to insure a successful post-surgical outcome, something this
>simple but significant causes a problem!  Either way, this whole thing
shows
>me once again how valuable this web list can be to us.
>
>    I will post a message in the next few days with whatever information I
> ...




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From: + r e d + o n + w h i t e + <pjaic@globalbiz.net>
Date: Mon, 06 Sep 1999 21:24:34 -0400
Subject: I'm new to the list

Hello everyone. I just joined the list last night, kind of need some
advice from someone. I first found out I had scoliosis when I was about
10 or 11 years old. Although my mom was with me when I found out, she
believes that its all in my head and nothing is wrong with me (she
thinks I do it for attention). Lately I've been in constant pain, I
haven't been able to be active for more than a few hours at a time
without feeling worn out and exhausted. I don't have a license so I
can't go to the doctor myself, and my mom thinks I'm making this up, so
I don't really know what else I can do except go to the health clinic in
my high school, but even that I can't do until Wednesday because I'm not
back in school yet. Can anyone give me advice? Thank you.

Jenn




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From: Cara Detrick <soph4ever@yahoo.com>
Date: Mon, 6 Sep 1999 18:55:07 -0700 (PDT)
Subject: Re:peeps

Hi there:)
I too wore a brace for less than a year and my 2
curves both jumped about 10 degrees each, so I just
had surgery on July 2nd, and I'm doing great.  I wore
my brace when I was supposed to and didn't skimp on
hours, so I know there wasn't anything more I could
do.  I'm sure it's the same for you.  If you have any
questions about the surgery e-mail me on the list or
at my address at soph4ever@yahoo.com
Cara
 :)

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From: Bluebonne@aol.com
Date: Mon, 6 Sep 1999 21:55:45 EDT
Subject: Re: Surgery

I went back to school six weeks after my surgery.  I brought along a pillow 
to school, which helped ease my pain somewhat, and if needed teachers allowed 
me to walk around and take a break.  I would recommend keeping some sort of 
pain reliever in the nurse's office (or with you if your school allows it).  
It was a hard transition for me; going from lying in bed most of the day to 
bearing through a school day.  My stamina wasn't at it's fullest, which 
caused me to miss some school.  But it gradually gets easier...

Laura
(Bluebonne@aol.com)



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From: Cara Detrick <soph4ever@yahoo.com>
Date: Mon, 6 Sep 1999 18:58:16 -0700 (PDT)
Subject: Re:re:surgery

Hi there Ariana:)
I'm taking a pillow for school to put behind me since
I just had surgery 2 months ago and the chairs can get
really uncomfortable.  I was either going to get
material with smiley faces on it, or just plain white
and have people sign it, to make it more fun--there's
an idea for you:)  I couldn't find smiley faces, but I
got a bright blue material with little silver stars on
it (I'm not describing it very well--it's a lot cooler
than I can make it sound:), and my grandma made me a
pillow case.  
So there's an idea for you.  Just make fun out it
however you can:)
Cara
 :)

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From: Mollyp70@aol.com
Date: Mon, 6 Sep 1999 21:57:09 EDT
Subject: Nerve regeneration

hmc:
According to Dr Bradford, approximately 75% of us who have had 
anterior/posterior fusions will regenerate the sympathetic nerves that are 
severed.  I, as part of the 25%, am 17 months postop, and never did. Dr B 
told me at my one year visit that they will not reconnect at this point.  
It is really not a terrible thing, however.  I have no feeling in the part of 
 my abdomen close to the incision, and I have diminished (about 50%) 
sensation on one thigh down to the knee.  The funniest outcome for me is that 
my umbilicus drifted to the left as a result of the anterior muscles being 
cut.  I wish they had done a tummy tuck, and put it back in the center!   
Maybe some men don't think of it as an issue.   Oh, well...   :-)
mp

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From: Linda Racine <lindaracine@earthlink.net>
Date: Mon, 06 Sep 1999 19:17:18 -0800
Subject: Re: Nerve regeneration

Hi Molly...

I don't know if it's unusual, but I think my sympathetic nerve did
regenerate about five years post-op.  My thigh was numb for about that
length of time, and then one day I just noticed that the sensation had
returned.  Very odd!

- --Linda



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From: CarolPerk@aol.com
Date: Mon, 6 Sep 1999 22:17:00 EDT
Subject: Re: motrin post fusion

Dear Steve:

There have been posts before on this list regarding the problem of taking 
NSAID's post fusion surgery, I'm sorry you didn't catch them.  My surgeon was 
emphatic about that as well as making sure I ate a high protein diet.  

Some doctors do not feel that NSAID's truely halt or slow down the ability to 
fuse bone.  I can tell you from practical experience that I did extremely 
well in terms of the speed that my fusion healed.  I have a friend who had a 
cervical fusion recently.  His doctor allowed him to take Motrin post-op.  He 
is having a very



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From: CarolPerk@aol.com
Date: Mon, 6 Sep 1999 22:20:13 EDT
Subject: Motrin and fusion - Con't

Sorry about sending an incomplete e-mail.

Anyway, my friend is experiencing a very slow recovery.  Finally, at his last 
appointment, three months post surgery, his doctor told him to go off any 
NSAID's.  Although this is antidotal, I think you get the picture.

C.P.



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From: Cara Detrick <soph4ever@yahoo.com>
Date: Mon, 6 Sep 1999 19:32:30 -0700 (PDT)
Subject: to jenn

Hi Jenn:)
I guess I don't really understand how your mom could
think you're making it up if she was with you when you
found out about it.  
Is it visible to the naked eye?  Mine is and if yours
is you could always just show your mom and explain to
her that it is painful.
Another suggestion is to get books from the library on
scoliosis.  Make sure they're recent or the info's
outdated, but there are some good books out there.
I think most people on here could tell your mom that
scoliosis is painful and we're not making it up to get
attention.
Cara

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From: Mercy106@aol.com
Date: Tue, 7 Sep 1999 00:02:59 EDT
Subject: Re: to jenn

cara,
 scoliosis is probably the most painful thing ever. If it hurts som uch ask 
to seek holf from a school nurse. or a doctor. scoliosis is very serious and 
it needs to be caught early. if your mom does not beleive you that is her 
problem.
best of luck
auna

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From: VSlaybaugh@aol.com
Date: Tue, 7 Sep 1999 00:48:34 EDT
Subject: Re: Nerve regeneration

In a message dated 09/06/1999 7:23:45 PM Pacific Daylight Time, 
Mollyp70@aol.com writes:

<< According to Dr Bradford, approximately 75% of us who have had 
 anterior/posterior fusions will regenerate the sympathetic nerves that are 
 severed.  I, as part of the 25%, am 17 months postop, and never did. Dr B 
 told me at my one year visit that they will not reconnect at this point.  
 It is really not a terrible thing, however.  I have no feeling in the part 
of 
  my abdomen close to the incision, and I have diminished (about 50%) 
 sensation on one thigh down to the knee. >>

There has been talk about nerve regeneration and Molly has stated that she 
has had some nerve damage that will never heal.  I have a question in regard 
to a similar matter.  I don't know anything about the sympathetic nerve or if 
what I experience has anything to do with it.  I have probably a 5" x 5" 
square area over my left scapula (from the spine toward the left side) that I 
cannot feel anything touch my skin.  There is no feeling on the skin layer if 
someone touches me lightly.  However, I do feel pressure there if someone 
puts pressure on my shoulder.  I am 18 months post-op and feel that this will 
not improve at all from this point since I'm am so far past surgery.  Does or 
has anyone else experienced this numbness over the scapula area that has or 
has not healed?  I attribute this numbness from the fact that I had six rib 
osteotomies in that area during my surgery and the doctor presumedly had to 
"peel" back more muscle tissue in that area to get to the ribs to cut them.

Vicky



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From: BoxtEnigma@aol.com
Date: Tue, 7 Sep 1999 00:49:26 EDT
Subject: Re: I'm new to the list

Jenn,
    How old are you? Do you know what your curves are like? I was diagnosed 
very late because my mom didn't believe me. Just this February I was 
diagnosed with 2 significant curves. I had been in pain for years but my mom 
didn't listen. Now she feels bad for her mistake, but I know how much it 
sucks to be in pain and have your own mother not believe you. I'm 15 by the 
way.
    I hate to say it but I have at least 2 other friends with a similar 
situation. They are sick and can't get help because they have mothers who 
don't listen, don't care, or don't have the finances. I'm planning on going 
to my congressman or a person of importance and asking him/her to set up a 
medical center for minors. Because we are under aged we can't get the help we 
need. In fact, there is a center for free prenatal care in nearly every 
county. However, that is the only free medical care a minor can receive. 
Unless we get pregnant, we are forced to suffer in vain. You are very lucky 
to have a medical center in your highschool. I am not so lucky. 
    Would you be willing to send me your story. You don't have to include 
your name or where you live. But I would like to use it as an example in my 
proposal. I really need some teens to back me up. Best wishes, hope we can 
make a difference. BYE!
                                -Sabriel

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From: Linda Racine <lindaracine@earthlink.net>
Date: Mon, 06 Sep 1999 22:10:58 -0800
Subject: Re: Nerve regeneration

Vicky...

I think there's a good possibility that the sensation in the area of
your scapula can come back.  Mine did.  Nancy Byl, who is the head of
the PT department at UCSF, recommends exposing the area to as many
different touch textures as possible.  I used a back brush, a ruler, a
towel... anything I could think of that would "tickle" the nerves in
that area.  It seemed to work for me.

- --Linda



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End of scoliosis V1 #1309
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