From:      bounce-scoliosis
To:        scoliosis-digest@ai.mit.edu
Subject:   scoliosis V1 #347
Reply-To:  
Errors-To: bounce-scoliosis
Precedence: bulk


scoliosis                Thursday, 23 January 1997     Volume 01 : Number 347


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

From: Ed Morey <c272719@mail.idt.net>
Date: Wed, 22 Jan 1997 09:30:32 -0600
Subject: Scoliosis surgery

Ed Morey wrote:
> 
> Brian D. and Margariet B. Murphy wrote:
> >
> > Please let us all not forget the reason why we subscribed to this list
> > in the first place: either we have or had a problem with scoliosis or
> > we know someone with the problem.  Maybe we are contemplating surgery
> > or bracing or are simply looking for possible options on other
> > treatments for scoliosis or are seeking others with similar problems
> > and are looking for support.
> >
> > We do not hear of all the success stories - those people who have had
> > fusion surgeries with or without instrumentation and no longer have to
> > be concerned with their scoliosis.  Many of these people would not
> > subscribe to such a mail list.
> >
> > I, myself, am a 48-year-old female with a 71 degree curvature
> > contemplating surgery using double CD rods and hooks and screws from
> > T11 to L4 with nerve-root decompression and additional fusion from L4
> > to the sacrum.  There are many possible complications and risks
> > associated with the surgery, but I have talked with many people who
> > have had similar surgeries and ALL of them have indicated that they
> > would opt for surgery if they had it to do all over again.  Some of
> > these people did have complications, but all came out OK and they are
> > happy that they underwent surgery.  For us "older folks" the risks are
> > greater and the recovery more difficult and longer than for children
> > or teens.
> >
> > We must all try to look at our options objectively - there are risks
> > associated with any surgery (using instrumentation or not); but we
> > must weigh the benefits and alternatives against the risks.  Then, we
> > must make our own decision and be comfortable with it.
> >
> > Meanwhile, are there any of you out there who have had or are going to
> > have the surgery at age 45 or older?  If so, I'd like to hear your
> > experiences.
> Hi,
> I am 52 and am contemplating surgery.  What have you heard as to the
> pros and cons?  I will be visiting a specialist after the holidays to
> see the status of my curve and his observations.  I think I have been in
> denial but the pain is beginning to get the best of me, not to mention
> the disappointment of how my clothes fit.  When are you going to have
> your surgery? Who have you seen?  Any info would be appreciated.
> 
> Thanks,  Sandy
> 
> --
> Concurrent VLSI Architecture Group
> MIT Artificial Intelligence Lab
> 545 Technology Square, Room 610
> Cambridge, Massachusetts 02139 USA (617)-253-0972
																			Hello All,

I keep reading about the "flat back syndrome" and would like to know if
there is anything I can say to my surgeon prior to surgery, to make sure
that he does everything possible to keep me from having this problem
later, since it seems that some of you have this problem. QUESTION:  If
before surgery, you knew that you were going to have the flat back
syndrome, would be have gone through with the surgery?

Aside from this, I saw a scoliosis specialist last week.  My curve has
progressed from 40 degrees to 48 degrees in 3 yrs. and is also rotated.
At this time, I only have the lumbar curve.  He suggests surgery asap
since I am 52 years old. He says it will continue and my quality of life
will decrease. As I age, they will not be able to operate due to age,
possible osteoporosis, etc,etc.  It will be a Harrington rod with
clips(not screws), six months to full recovery. I still don't feel that
bad now, except that I fatigue fairly easy and if I do anything standing
for a period of time, my lower back hurts.  I sometimes have vague or
small pains in my left leg and hip and also a tingling sensation, which
I attribute to the curve. I work out regularly and keep a good healthy
diet.  This is a "catch 22" situation, but I have decided that I should
take the gamble(surgery)in hope for a better quality of life in my later
years.I am planning to schedule the surgery for March.

Thank you all for your support and I appreciate your comments.

Sandy

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

From: "Paul Leger" <legerpj@nbnet.nb.ca>
Date: Wed, 22 Jan 1997 16:24:31 -0400
Subject: Re: Scoliosis surgery

As far as I am aware they don't fuse the spine straight anymore. They now
put the normal front to back curvature. (I could be wrong though.) Most of
the people that have flat back syndrome have developed this problem due to
surgery 20 years or more ago. Mine stems from surgery that was originally
performed 27 years ago.

In addition to your question of whether I would do it again..... Of course
I would. I would have been severely handicapped by age 20 without the
surgery. Already at 12 years old my lungs where getting restricted. The
surgery was necessary. The doctors did the operation in a manner that they
thought right. They have had 30 years or more to refine their techniques.

Paul

> I keep reading about the "flat back syndrome" and would like to know if
> there is anything I can say to my surgeon prior to surgery, to make sure
> that he does everything possible to keep me from having this problem
> later, since it seems that some of you have this problem. QUESTION:  If
> before surgery, you knew that you were going to have the flat back
> syndrome, would be have gone through with the surgery?


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

From: Debra Lewis <deblewis@cyberstate.infi.net>
Date: Wed, 22 Jan 1997 15:25:55 -0500
Subject: Reply to Sandy. Re:Scoli surgery.

Ed Morey wrote:
> 
> Ed Morey wrote:
> >
> > Brian D. and Margariet B. Murphy wrote:
> > >
> > > Please let us all not forget the reason why we subscribed to this list
> > > in the first place: either we have or had a problem with scoliosis or
> > > we know someone with the problem.  Maybe we are contemplating surgery
> > > or bracing or are simply looking for possible options on other
> > > treatments for scoliosis or are seeking others with similar problems
> > > and are looking for support.
> > >
> > > We do not hear of all the success stories - those people who have had
> > > fusion surgeries with or without instrumentation and no longer have to
> > > be concerned with their scoliosis.  Many of these people would not
> > > subscribe to such a mail list.
> > >
> > > I, myself, am a 48-year-old female with a 71 degree curvature
> > > contemplating surgery using double CD rods and hooks and screws from
> > > T11 to L4 with nerve-root decompression and additional fusion from L4
> > > to the sacrum.  There are many possible complications and risks
> > > associated with the surgery, but I have talked with many people who
> > > have had similar surgeries and ALL of them have indicated that they
> > > would opt for surgery if they had it to do all over again.  Some of
> > > these people did have complications, but all came out OK and they are
> > > happy that they underwent surgery.  For us "older folks" the risks are
> > > greater and the recovery more difficult and longer than for children
> > > or teens.
> > >
> > > We must all try to look at our options objectively - there are risks
> > > associated with any surgery (using instrumentation or not); but we
> > > must weigh the benefits and alternatives against the risks.  Then, we
> > > must make our own decision and be comfortable with it.
> > >
> > > Meanwhile, are there any of you out there who have had or are going to
> > > have the surgery at age 45 or older?  If so, I'd like to hear your
> > > experiences.
> > Hi,
> > I am 52 and am contemplating surgery.  What have you heard as to the
> > pros and cons?  I will be visiting a specialist after the holidays to
> > see the status of my curve and his observations.  I think I have been in
> > denial but the pain is beginning to get the best of me, not to mention
> > the disappointment of how my clothes fit.  When are you going to have
> > your surgery? Who have you seen?  Any info would be appreciated.
> >
> > Thanks,  Sandy
> >
> > --
> > Concurrent VLSI Architecture Group
> > MIT Artificial Intelligence Lab
> > 545 Technology Square, Room 610
> > Cambridge, Massachusetts 02139 USA (617)-253-0972
>                                                                                                                                                         Hello All,
> 
> I keep reading about the "flat back syndrome" and would like to know if
> there is anything I can say to my surgeon prior to surgery, to make sure
> that he does everything possible to keep me from having this problem
> later, since it seems that some of you have this problem. QUESTION:  If
> before surgery, you knew that you were going to have the flat back
> syndrome, would be have gone through with the surgery?
> 
> Aside from this, I saw a scoliosis specialist last week.  My curve has
> progressed from 40 degrees to 48 degrees in 3 yrs. and is also rotated.
> At this time, I only have the lumbar curve.  He suggests surgery asap
> since I am 52 years old. He says it will continue and my quality of life
> will decrease. As I age, they will not be able to operate due to age,
> possible osteoporosis, etc,etc.  It will be a Harrington rod with
> clips(not screws), six months to full recovery. I still don't feel that
> bad now, except that I fatigue fairly easy and if I do anything standing
> for a period of time, my lower back hurts.  I sometimes have vague or
> small pains in my left leg and hip and also a tingling sensation, which
> I attribute to the curve. I work out regularly and keep a good healthy
> diet.  This is a "catch 22" situation, but I have decided that I should
> take the gamble(surgery)in hope for a better quality of life in my later
> years.I am planning to schedule the surgery for March.
> 
> Thank you all for your support and I appreciate your comments.
> 
> Sandy
 Dear Sandy: Debbie L. here. Yes, we all support you in what you face. I
was not in my forties or fifties, but was 39 when I had my anterior
thoraco-lumbar fusion with instrumentation, and with rib graft. Mine was
T10-L4. I have one pediatric rod and screws. Even though I ended up with
RSD and as it looks, also arachnoiditis, from all the myelograms,
discograms, spinal injections, etc, I do not in any was regret having my
surgery. I think my surgeon was very surprised to hear me say that, but
I mean it. The pain I had prior to surgery was indeed horrible, as well
as the present pain is, but just knowing that I could possibly be in
less pain made me desire to go through the surgery. The pain I have now
is a different pain entirely, although not any less, but worse! I'd
still do it all over again. My clothes fit so much better, my shoulders
are more equal in height, and my pants legs are not so obviously
different lengths! Now my curve is not by any means gone, but decreased
from about 55-60, to around a 35. It makes a MAJOR difference! And I do
have a waistline again! Don't get me wrong, I certainly do not feel good
enough to be "showing off my figure"!, as I feel awful most all the
time, but to me, it was worth it all. You will know this feeling in time
also. Keep us posted. Debbie.
- -- 
MZ

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

From: JDKatz@aol.com
Date: Wed, 22 Jan 1997 18:11:13 -0500 (EST)
Subject: Re: What to do about my scoliosis?

Thanks for the wise post, Rose. It's so important a point, to trust how you
feel. That's the trick here as parents. We're responsible for making the
right call.

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

From: XTreamer@aol.com
Date: Wed, 22 Jan 1997 21:48:20 -0500 (EST)
Subject: Success story

Amen to Paul's comments.

I had my Harrington rod (T2-T10) in 1983.  My curve was 70/40 and progressing
rapidly, so I really had no choice.  I'm 32 and convinced that my quality of
life is superior to what it would have been if I hadn't had surgery.

I have chronic pain, so I can't say that I "never have to think about my
scoliosis, again", but I am living my life to it's fullest ---- I'm married
and my husband and I enjoy downhill skiing, scuba diving and skydiving.  I
think a positive attitude goes a long way in living with scoliosis.



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

From: nnp006@worldnet.att.net
Date: Thu, 23 Jan 1997 03:36:45 +0000
Subject: non-surgical treatment for scoliosis

Hi all,

Has anybody out there heard about the COPES scoliosis treatment program.
Please let me know if you or somebody you know have any experience with the
treatment. I have read that the treatment does not involve any surgery and
the brace is worn for a period of 2 - 3 years before an 80 - 100%
correction. It sounds too good to be true but maybe it is.

Thanks.


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

From: Rich Lethin <lethin@ai.mit.edu>
Date: Wed, 22 Jan 1997 22:44:58 -0500 (EST)
Subject: Re: non-surgical treatment for scoliosis

This is what I have on the mailing list home page about Copes.  I'm
not satisfied with it.  

Rich



<LI>The Copes Foundation
<P>
The Copes Foundation actively promotes itself on the Internet: it's
prominently at
<AHREF="http://www.scoliosis.com">www.scoliosis.com</A>.  Reading the
pages, it appears that the Copes Foundation is a clinic in Baton
Rouge, Louisiana founded by an orthotist named Copes.  The Copes
Foundation web site
promotes something called the "TRS".  
<P>
I'd never heard of the Copes Foundation before I ran across their web
site.  My initial reaction, seeing their web site, was that it was
pretty slick: too slick.  Rereading it now, I see that TRS stands for
"Treatment Recovery System."  This is strange, because I thought that
I initially read it as the "Total Recovery System."  I must have read
it incorrectly.  A claim for total recovery for every patient would be
pretty extraordinary.  
<P>
Among the components of the proposed therapy was nutritional therapy
and chiropractic care.
<P>
Initially, I was pretty critical of the Copes pages.  Then someone
complained that my criticism was unfair.  He claimed that he'd had
success.  Soon after, someone asked about Copes on the mailing list.
A response was that when doctors had been asked about it, they
claimed that it was "snake oil" and that it was very expensive.
Anyway, I've removed my initial criticism and now only have this
short note.
<P>
The central claim of COPES is that through an elaborate regimin of exercise,
nutritional therapy and chiropractic care combined with a specially
designed "active" brace Copes can correct scoliosis - rather than just
arrest the curvature.
<P>
If this is true, why doesn't the majority of the medical profession
use this technique?
<P>
Is the treatment any good?  Is it worthwhile?  Does it work?  Are
there any risks, side effects, failures?  As far as I can tell the
supportive evidence - in the form of double-blind, controlled clinical
research studies just isn't there.  This doesn't say that it doesn't
work. I was contacted by one person who claimed that he'd had a lot of
success with the treatment.  He offered to send X-Rays showing how it
worked.
<P> 
Another thing that he spoke of was the requirement for dedication to
the Copes treatment regimin; that correction requires one to be
diligent about doing the exercise and following the nutritional
regimin.  Again, this might be true.  It also might be a
mechanism for instilling a cult-like dedication, and
convenient means for transferring the responsibility and guilt for
treatment failures to less-than-fervent patients.
<P>
If you've got some opinions or experience with this, let me know.
<P>

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

From: "Brian D. and Margariet B. Murphy" <BDMurf@worldnet.att.net>
Date: Wed, 22 Jan 1997 19:18:11 -0500
Subject: Re: Steriod Injections

> 1.  Anyone else have experience with Vitarin -- I am not sure of the
> spelling as I can barely read his writing and I haven't had it filled
> yet.

Gloria:

I haven't communicated in awhile.  Sorry to hear about your recent
problems.  I read that Debra Lewis thought your doctor probably prescribed
Vicodin.  I think, however, that he may have prescribed "Voltaren" which is
a well-known non-steroidal anti-inflammatory drug.  I, myself, am taking it
as prescribed by my orthopedist (scoliosis specialist).  I was taking 75
mg. twice a day but my rheumatologist has given me Voltaren XR of 100mg.
once a day.  It does help my back pain somewhat and definitely helps with
the osteoarthritis I have.  There don't seem to be too many long-term
effects from taking this drug for extended periods - but blood tests should
be done periodically to be sure that no damage is being caused.

I was really amazed at how quickly the Voltaren helped my arthritis
symptoms and did lessen my back pain.  It is not a cure though (can't help
but wish it was).

I have still not opted for surgery yet.  I will see my rheumatologist in
late February and we will reassess.  At this point, there is no need for me
to go back to the scoliosis surgeon until I am ready for the surgical
procedure.

	-Margariet B. Murphy-  

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

End of scoliosis V1 #347
************************

