From:      bounce-scoliosis
To:        scoliosis-digest@ai.mit.edu
Subject:   scoliosis V1 #408
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scoliosis                 Saturday, 29 March 1997      Volume 01 : Number 408


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

From: Momble@aol.com
Date: Fri, 28 Mar 1997 05:48:39 -0500 (EST)
Subject: Julie S

When did you have your surgery? Swenkter did mine at Hershey in March of '85.
I don't know if he is a member or not but I do know I would trust him with my
spine (and my life) again if I had to have more surgery. Did you recoup at
E-town Hospital? I had a Harrington rod fusion with six months in a cast.
What about you? This board is cool because I've never known anyone else who
understood. But it's amazing to find someone with the same surgeon. One
question. Do you ever have sharp pains like someone is sticking a fat needle
in at the top hook of your rod? I always have and no one can explain why.
Some days it drives me nuts. Momble
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From: Momble@aol.com
Date: Fri, 28 Mar 1997 05:55:09 -0500 (EST)
Subject: Kelly

I can't believe you can sleep on your stomache! That was the only way I slept
before surgery but I hurt like hell if I even atempt it now. I sleep on my
side with a pillow between my knees and one to hug like they put me after
surgery. If I sleep on my back I need a pillow under my knees. My bed used to
be burried in pillows until I bought a body pillow. It covers all the bases
without covering the entire bed.Momble
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From: Momble@aol.com
Date: Fri, 28 Mar 1997 06:06:51 -0500 (EST)
Subject: Numbness

I am wondering if anyone else wakes up with completely useless arms if they
sleep on their back. My arms and hands are numb and dead. I doesn't take too
long for them to wake up but it is annoying. Momble
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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 07:12:51 -0500
Subject: Re: Marfans Syndrome  (was cross-bite and scoliosis connection.)

I'm sure this ground has been covered on this list previous to my joining,
but it can't hurt to say it again.  Some of the symptoms that have been
discussed the past few days such as hypermobility, and of course scoliosis
could be indicative of Marfans Syndrome.  This is a hard to diagnosis
collagen disorder, with symptoms that can easily be overlooked.  Diagnosis
is a process of elimination, but includes testing of the lens of the eye, 
and the aorta of the heart.   

It is possible to have qualities of Marfans and not actually have Marfans ,
as they say I do.  (I'm a Marfanoid- guess I've been called worse!). 
People with Marfans are usually very tall and thin.  Lots of info.  is
available  on the web on this, and there is a whole newsgroup on it at
alt.support.marfan.  I'm sure some of you out there already know the drill
on this one!

Julie S.

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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 07:35:37 -0500
Subject: Re: Dr. Schwenkter -  

Melisssa (aka Momble),

It is great to hear from someone else who had Dr. S.  He is truly an
amazing surgeon.  I chose him regardless of the fact that he is a pediatric
surgeon and I am an adult. (Young at heart I told him.)   I had my surgery
in June 1995.  It took 8 hours, and at that time I had rods put in using
Izola instrumentation, and the top half of my spine derotated.   My curves
went from the 60's to the 20's.  I stayed at Hershey Medical Center for 1
week, on a general ortho floor.  I was to go to a SICU but was doing well
so the plan changed.   My experience there was not a positive one,  though
I hear I am the exception. If I had to do it again,  I would insist on
being put in a SICU for the immediate post-op time.   The surgery itself 
was a great success.  One note on using a pediatric surgeon as an adult-  
I felt my post-op  pain needs were not understood.   This was a real issue
for me.  I also would trust him again if necessary,  though I would like to
know who the SRS surgeons at Hershey are.

I do get sharp needle pains now and again.  For me they are just muscle
spasms.  I got them before surgery also,  but much worse then.   They do
make you nuts because your never expecting them.  If someone did come up
and jab me I probably wouldn't even bother turning to look!    

Oh yeah - I did not have a cast or anything like that.  Dr. S says they do
not cast post-op scoliosis patients anymore.  ( although I have read
otherwise on this board.)
He says  "spinal fusion with internal fixation"  means you are internally
braced until the fusion heals.  This is what I had.

Julie S.

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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 07:48:04 -0500
Subject: Mitral valve prolapse

Here is another interesting connection - seems a lot of people with
scoliosis have a MVP- especially women.  Anyone else with this?  The combo
of having rods and a MVP make taking prophylactic antibiotics a must with
dental work.  

Julie S.

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From: Momble@aol.com
Date: Fri, 28 Mar 1997 09:23:33 -0500 (EST)
Subject: Re: Mitral valve prolapse

Julie S'
  Guess what else we have in common. I also have MVP. I hate being pr
medicated but it is necessary I guess. It's neat that Dr S is also your Dr.
                          Momble
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From: losttrack@gis.net
Date: Fri, 28 Mar 1997 10:05:51 -0500
Subject: Mitral Valve Prolapse

Hello Everyone,
		Ummm, I'm a little nervous here. Everyone has been talking about
additional conditions that we scoliosis people also suffer from. Well, I
too had to wear braces for a severe overbite and I've also had similar
eye problems as those mentioned.(I was born crosseyed and was operated
on.My vision in my left eye is much weaker than the right.) My concern
is about MVP. Could I have this,too?? What are the symptons? Why do
people with scoliosis get this more than other people? Boy, to think all
of my little "defects" could some how be related! weird!

Sheila
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From: "Richard A. Lethin" <lethin@equator.com>
Date: Fri, 28 Mar 1997 10:27:50 -0500 (EST)
Subject: Marfan's Syndrome

Interesting.  There's a lot of information about Marfan Syndrome
(MFS), including clinical features, the molecular genetics, etc.
at

   http://www.ncbi.nlm.nih.gov:80/htbin-post/Omim/dispmim?154700

Rich

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From: Patti McCormick <sbjork@worldnet.att.net>
Date: Fri, 28 Mar 1997 09:38:36 -0600
Subject: Re: Referral

Amy,

You said that the doctors removed your rods because of a deep infection. 
 Didn't you have any other symptoms other than the sore on your back.  
It scares me to think that you could have that bad of an infection and 
not know.

Patti McCormick
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From: Amy Turkel <aturkel@vt.edu>
Date: Fri, 28 Mar 1997 11:18:13 +0500
Subject: Re: Referral

Patti,

That was one of the strangest things about it.  I never had a fever, night
sweats, or chills.  I mentioned that it had gone undiagnosed as an infection
for a long time.  During that time, the sore had been cultured three times
and there was never any indication of an infection because they never got
any bacteria to grow out.  Typically, they only let the cultures sit for 1
or 2 days, I think.  The infection wasn't actually found until it had been
physically looked at inside me.  After the rods were removed, it took about
5 days for the specific bacteria to actually grow out and the infectious
disease doctor could prescribe the correct antibiotic.  Before then, I was
on 3 very strong, general antibiotics that would fight just about anything.
This played havoc on my stomach.  The other symptoms of infection played a
big role in when I was to have the rods removed.  Since I was five hours
from home we decided to wait until my fall semester was over unless I
discovered any of the other symptoms.  In that case I was supposed to come
home immediately and have the surgery on an emergency basis.

Amy

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From: Daniel J Brotschul <danbro@grove.ufl.EDU>
Date: Fri, 28 Mar 1997 11:44:13 -0500 (EST)
Subject: Re: Braces (orthopedic & orthodontic)

On Thu, 27 Mar 1997 XTreamer@aol.com wrote:

> Well, I've never heard of a correlation, but it is an interesting thought.
>  I, too, had orthodontic braces (and a wicked overbite).
> 
> I actually read of a condition (I think it was Hypermobility syndrome).  One
> of the varieties of this disease can result in severe scoliosis.
>  Hypermobility sounds kind of like what we used to call being
> "double-jointed".  One of the "signs" is having greater than normal
> flexability in your joints, like being able to touch your thumbs to your
> wrist (which I can do).

> So, just for the unscientific survey (which is pretty interesting), how many
> people can naturally touch their thumb to their wrist?  ---- although I'm not
> sure trying this for the first time is a great idea, I'd like to know if
> anyone else is "hypermobile".
> 
> Oh, and I don't have webbed toes; does it make it easier to swim? ;).
> 
> Dinah

For the sake of your informal survey, I would like to let you know that I
have nearly perfect teeth, and I have never required orthodontic braces. 
I am definitely not hypermobile in the way that you describe, although I
have known many people without scoliosis who were hypermobile.  I have
noticed minor asymetiricalities throughout my body, but to my experience,
they are not uncommon among all people, scolitic or otherwise.  I have
seen many people who do not have scoliosis that have slightly
asymmetrical facial features, and many who walk with one foot pointing
outwards more than the other.  There are many women with one breast
noticabley larger that the other.   The general human population as a
whole tends to be slightly assymetrical.  That would include the spine.
Every individual is scoliotic in the sense that some slight lateral curve
exists in the spine, but it is usually stable and healthy.  It is the
severe scoliosis that increases out of control that is a problem.

It would seem that these other imbalances that you mention are also
normal, and that they and severe scoliosis do not necessarily accompany
one another.  When I was first diagnosed with scoliosis, I became very
conscious of these traits in people, and in my experience, there seems to
be no direct correlation.

Daniel

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From: "Jerry Page & Karen Winings" <folklore@northlink.com>
Date: Fri, 28 Mar 1997 10:34:10 0700
Subject: Re: cross-bite and scoliosis connection.

Linda,

Perhaps you're right.  It was the ONLY possible cause for scoliosis 
that I was ever offered until I found this list where genetics has 
been discussed.  Also, in case you're curious, the Prescott Folklore 
Center is a music store specializing in acoustic stringed instruments 
like fiddles (violins), banjos, mandolins, guitars, etc. - mostly
used and vintage.

Karen


> Date:          Thu, 27 Mar 1997 20:53:51 -0800
> From:          Linda Racine <lindaracine@earthlink.net>
> To:            scoliosis@ai.mit.edu
> Subject:       Re: cross-bite and scoliosis connection.
> Reply-to:      scoliosis@ai.mit.edu

> Karen....
> I notice you work for the Prescott Folklore Center... I assume you know
> that your eye doctor's diagnosis of scoliosis caused by your eye
> condition is, indeed, pure folklore.
> 
> Linda
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From: Linda Racine <lindaracine@earthlink.net>
Date: Fri, 28 Mar 1997 09:35:39 -0800
Subject: Re: Mitral Valve Prolapse

Sheila...
I don't think MVP is anything you have to worry too much about.  I think
I heard that about 10% of the population has it.
Linda
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From: Clelia De Ambrosiis <cdeambro@novanet.it>
Date: Fri, 28 Mar 1997 18:34:36 -0100
Subject: Re: cross-bite and scoliosis connection.

I have scoliosis and I have teeth/ jaw misaligned. At age 12 I had an
orthodontic brace to correct my buck teeth. At the same age I developed
scoliosis. I had surgery just before 15 with Harrington rod and T6-L3 fusion
in 1982.
 
I went to the dentist one year ago and he found that my teeth were
misaligned. He says that he often finds people with teeth misalignement and
scoliosis. He thinks that the two defects are correlated. He made a bite for
me to replace the correct alignement. It doesn't help for neck pain with me
but it helps relax the jaw muscles that are often stiff. I wear it at night. 

It would be interesting to know if the jaw misalignement affects the spine
or vice versa or if the two defects start at the same time. 


Clelia



At 09.26 27/03/97 -0800, you wrote:

>I am just curious if there are any scoliosis people out there who had
>cross-bites (as in orthodontic, teeth/jaw missaligned?).  
>I was said to have a cross bite when I was younger that they fixed
>when I was in the 1st grade, and later a dentists nurse who knew I had
>a cross bite, asked if I also had scoliosis.  I figured if a dentist had
seen it
>before, maybe there where others out there. 
>
>I doubt there is any published connection, but I thought this would be the
>right arena to ask about it.
>
>anyone?
>just curious.
>-Johanna
>

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From: Johanna Buck <buck.j@ghc.org>
Date: Fri, 28 Mar 1997 11:45:52 -0800
Subject: Re: cross-bite and scoliosis connection. -Reply

I had my teeth fixed a long time ago but my jaw gets stiff also.  When I
wake up it is really stiff, it pops and often causes headaches.  I thought it
was TMJ but maybe it isn't.  

I had been diagnosed with asthma during high school but I didn't think I
had it.   This year I was sent for a lung function test to see if the
scoliosis was affecting my lungs, and the technition said I had no signs
of asthma but that my lungs were functioning at 75+% from the scoliosis.

Anyway, even if all the things we notice are not associated with
scoliosis, maybe our own knowledge can enable us to help our doctors
diagnose and treat our problems properly.  That is assuming they listen.

I think if I find a doctor who has seen enough scoliosis patients to see
any of these similarities, I will feel more comfortable being his/her patient.

- -Johanna
 

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Date: Fri, 28 Mar 1997 11:34:36 -0800
From: Clelia De Ambrosiis  <scoliosis@ai.mit.edu>
To: scoliosis@ai.mit.edu, cdeambro@novanet.it
Subject: Re: cross-bite and scoliosis connection.

I have scoliosis and I have teeth/ jaw misaligned. At age 12 I had an
orthodontic brace to correct my buck teeth. At the same age I developed
scoliosis. I had surgery just before 15 with Harrington rod and T6-L3 fusion
in 1982.
 
I went to the dentist one year ago and he found that my teeth were
misaligned. He says that he often finds people with teeth misalignement and
scoliosis. He thinks that the two defects are correlated. He made a bite for
me to replace the correct alignement. It doesn't help for neck pain with me
but it helps relax the jaw muscles that are often stiff. I wear it at night. 

It would be interesting to know if the jaw misalignement affects the spine
or vice versa or if the two defects start at the same time. 


Clelia



At 09.26 27/03/97 -0800, you wrote:

>I am just curious if there are any scoliosis people out there who had
>cross-bites (as in orthodontic, teeth/jaw missaligned?).  
>I was said to have a cross bite when I was younger that they fixed
>when I was in the 1st grade, and later a dentists nurse who knew I had
>a cross bite, asked if I also had scoliosis.  I figured if a dentist had
seen it
>before, maybe there where others out there. 
>
>I doubt there is any published connection, but I thought this would be the
>right arena to ask about it.
>
>anyone?
>just curious.
>-Johanna
>

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From: afrazier@texoma.net (Andy Frazier)
Date: Fri, 28 Mar 1997 14:06:17 +0000
Subject: Re: Numbness

>I am wondering if anyone else wakes up with completely useless arms if they
>sleep on their back. My arms and hands are numb and dead. I doesn't take too
>long for them to wake up but it is annoying. Momble
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Momble
I have it happen almost every night. And you are right, it doesn't last long and
it is annoying. I now sleep on my back. (use to sleep on my stomach before
surgrey).
Melanie

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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 16:15:14 -0500
Subject: Re:  SRS

Linda,

Thank you for checking on SRS doctors at Hershey Medical Center.  Here is
the address:

The Milton  S. Hershey Medical Center
P.O. Box 850
Hershey, PA  17033

Also,  thanks for all the good info. you provide about SRS.  I had never
heard of it until I started reading this group.

Julie S.

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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 16:07:25 -0500
Subject: Re: Mitral Valve Prolapse

Sheila,

Mitral Valve Prolapse is a commom heart valve abnormality.  It affects
5-10% of the general population.  Most people have no symptoms and require
no treatment.  Its symptoms can include fatigue and palpitations.  My
doctor knew I had it before I ever had an echocardiogram because he could
hear a clicking type heart murmur.  The echo test was done as part of
Marfans screening, not for MVP.  It is truly not a problem at all for me- I
only brought it up because I read an article that profiled a certain type
of female who is prone to have these two together (MVP and scoliosis).    I
was curious if the article was correct.   

You asked in your reply why people with scoliosis get this more often?

The article I read didn't indicate that they get it more often.  I'll bet
many many people have scoliosis and not MVP.

Julie S.






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From: Linda Racine <lindaracine@earthlink.net>
Date: Fri, 28 Mar 1997 15:02:19 -0800
Subject: Re: SRS

Hi Julie...
The only SRS doctor reported in Hershey was Dr. Lee S. Segal, who is
deceased.

In Pennsylvania, however, there are quite a few doctors.  Do you want
Philadelphia, Pittsburgh, Mechanicsburg, or Reading?

Linda
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From: pjjj4@mail.cvn.net
Date: Fri, 28 Mar 1997 19:51:32 -0500
Subject: Re: SRS

Linda,

I think I would like to know if there are any in Towson Md., instead of PA.
 I am located almost on the MD line and would go that direction instead of
the Phili direction.  Thanks.  Also,  I have heard of a spinal clinic in
Towson and thought there might possibly be an SRS doctor there??

Julie

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From: Linda Racine <lindaracine@earthlink.net>
Date: Fri, 28 Mar 1997 18:55:02 -0800
Subject: Re: SRS

Hi Julie...
In Towson is Dr. Paul McAfee whose address is:
Spine and Scoliosis Center
7505 Osler Dr. Ste. 104
Towson, MD  21204-2012
(410)337-8888

Hope this helps.
Good luck.

Linda

pjjj4@mail.cvn.net wrote:
> 
> Linda,
> 
> I think I would like to know if there are any in Towson Md., instead of PA.
>  I am located almost on the MD line and would go that direction instead of
> the Phili direction.  Thanks.  Also,  I have heard of a spinal clinic in
> Towson and thought there might possibly be an SRS doctor there??
> 
> Julie
> 
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From: "Glenn S. Burke" <gsb@pobox.com>
Date: Fri, 28 Mar 1997 22:03:16 -0500
Subject: Re: Numbness

At 6:06 AM -0500 3/28/97, Momble@aol.com wrote:

>I am wondering if anyone else wakes up with completely useless arms if they
>sleep on their back. My arms and hands are numb and dead. I doesn't take too
>long for them to wake up but it is annoying. Momble

Yes!  It's awful.  I'm 40 now, and 15 years ago when I was first ever
checked out by an orthopedist, his biggest direction was for me to sleep on
my back.  Losing the circulation in my arms like that also aggravates other
problems, like little infections in hangnails, or causes arthritis to flare
up where I broke a wrist a long time ago.  Sometimes my hands just feel
bruised, and I can't grip anything (and my typing becomes sluggish, too).

A suggestion I got from a friend who had gotten severely burned as a child
was to elevate my arms on pillows at my sides;  it works pretty well.  But
I still usually sleep on my side, with some combination of 5 feather
pillows and an elderly pit bull supporting me in various positions.  And I
tend to switch sides a lot.

- -----------------------------------------------------------------------
Glenn S. Burke                    |   gsb@pobox.com
Phone: 617/492-7274               |   Alternate:  gsb@mc.lcs.mit.edu
Fax:   617/661-3494               |   Backup:  gsb@tiac.net


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From: "Glenn S. Burke" <gsb@pobox.com>
Date: Fri, 28 Mar 1997 22:33:06 -0500
Subject: Re: cross-bite and scoliosis connection.

I also had misaligned teeth - more tending towards being pushed out from
the gum line than buck, but the front ones weren't by any means straight.

I got braces when I was about 23 or 25, myself.  I also had a receding gum
line, and had to have some gum grafts done before it was safe to do the
orthodonture, which I got done to save my teeth.  The orthodontist said he
had never seen an adult's teeth get corrected so easily.  Of those who got
braces, what was your experience with how easily the teeth migrated under
pressure?

I saw a rheumatologist at MIT about problems with my thumb joints (from
bike riding), and he pretty much told me what was just said about collagen:
I'm somewhat hyperextensive, but not to the degree some people are.

What I'm surprised no one has mentioned is Reynaud's syndrome, which I was
once told is linked to scoliosis, and also like it, occurs mostly in women.
I also had an appearance of that, in a relatively mild form.  This was the
reason I gave up cigarettes for good;  it still took a while for it to
subside.  Now (about 10 years since I quit) I only get little hints of it
in fingertips and toes, and only rarely.  (Reynaud's syndrome involves
extreme sensitivity to cold, having the circulation cut off.  Mine involved
at most the hands and feet (I think maybe ears too sometimes), and usually
only half of them;  it was like you could draw a diagonal line from the
outside of my wrist to the first knuckle of my index finger, and everything
beyond the line would be sheet-white, with no circulation and usually no
feeling (it wouldn't hurt til the circulation came back), and the rest was
perfectly normal.  And often it took a lot of patience and warming for it
to come back.)

- -----------------------------------------------------------------------
Glenn S. Burke                    |   gsb@pobox.com
Phone: 617/492-7274               |   Alternate:  gsb@mc.lcs.mit.edu
Fax:   617/661-3494               |   Backup:  gsb@tiac.net


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End of scoliosis V1 #408
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