Conference moira::parenting

    I also have scoliosis, but not severe enough to require any type of
    surgury (I have a double curve).  I can surely sympathize with you and
    your daughter.
    
    When I was 16, I had knee surgury at New York Hospital for Special
    Surgury.  While there, they had many teens admitted for the same
    operation your daughter will be going through.  The hospital was
    wonderful and the kids, with full "casts" on their backs, got around
    like nothing was wrong.  They also grew up to a couple of inches after
    the operation, so don't be surprised if after your daughter's operation
    she'll need new clothes.  Although I would think this as a scary
    operation, it is not uncommon and Children's Hospital is a good and
    reputable hospital.  Sorry I could not offer any other information.
    
    Mary
    

                      <<< Note 195.0 by MRKTNG::SIMONS >>>
                    -< Scoliosis - Curvature of the spine >-

	My wife had severe Scoliosis.  When we first got married I was in the 
Air Force and we had access to unlimited free medical care.  She was diagnosed 
by one of USAF's top Orthopedic Surgeons and he met with us for a 
consultation.  He was all smiles as he told us he could straighten her back 
with surgery.  "Of course", he says, "she'll probably develop problems in 
later years, but that's and acceptable risk."  

	Well, to be nice about it, we told him no.  (Propriety doesn't 
permit me to recount what we really said to him.)  My wife began seeing a 
chiropractor for her condition.  After about 8 months of treatment the 3 
curves in her back had straightened by just over 65%.  (I don't remember 
off hand the exact numbers.)  Now, 15 years later, she sees the 
chiropractor once or twice a month and has minimal problems. 

	Eight months might seem like a long time for initial treatment.  
But she decided she wanted to try all alternatives to surgery.  I had to 
agree with her.  I'm more interested in my family's health than I am in 
contributing to some knife-happy jerk's Mercedes.

	In another example, one of my close friends has practiced a form of 
Chinese Martial arts for about 16 years.  The style he practices is very 
acrobatic.  About 10 years ago he had to face the prospect of retiring from 
teaching due to Scoliosis that was increasing in severity.  Rather than 
retire entirely from the martial arts, he began learning T'ai Chi Ch'uan 
from a Chinese teacher.   Over the curse of the next couple years the 
severity of hi Scoliosis began to lessen.  Did practicing T'ai Chi 
contribute to this?  I don't know, but he swears it did.  He's now back to 
working full tilt on the style he originally learned and enjoyed.  But he 
continues his T'ai Chi practice.



			Good Luck,

			   Ron

    When I was about 14 years old, I was taken to Boston's Children's
    Hospital for Scoliosis too.  The doctor there suggested I have the
    metal rod implant too.  But my parents said, "No way!" because they
    didn't want anyone with a knife near my spine.  They had said they
    would have to make an incision from the base of my neck down to the top
    of my butt.  Then they said I would be in a "body" cast for 9 months. 
    Now, this was 12 years ago, so I'm sure a lot has changed since then.
    
    Here's some words of advice.  Because my parents wouldn't let me go
    through the surgery, I had to live in a back brace from my neck down
    for 23 hours a day for 4 years.  Let me tell you, I would have much
    rather gone through surgery!
    
    If your daughter doesn't have her back fixed now, it will become
    considerably worse once she gets pregnant.  I know mine has worsened a
    lot since I've had two children.
    
    One of the other noters is right, she will "grow" a couple of inches
    after surgery.  My husband had back surgery (disc) and he is now 2
    inches taller than he was before.
    
    I would ask your doctor if there is a support group or someone within
    Boston Children Hospital that you could talk to.  
    
    Best of luck, and remember, you're in one of the best children's
    hospitals in the country.  They know what they're doing.
    
    Regards,
    Gail

    I grew two inches with my surgery also....but I won't clutter up this
    note with what I already answered in the MEDICAL notes.
    Oh yes, and about the body cast...I had one for my first rod surgery
    and for the second (replacement of broken rod) but no body cast for the
    third and forth surgery.  I don't believe they use them anymore.  If 
    anything I believe they use a brace for a short while after surgery.
    
    Marie

    I'm not on a campaigne here, but just to suggest the other thing the
    Shriners' do, is help children with orthopedic problems.  The one in
    Springfield MA is brand new, again all care and consultations are free. 
    Many of their staff if from local hospitals in Springfield (Mercy,
    BayState Medical etc) and they have an excellent reputation.  This also
    included a school curriculum for the kids, while they are hospitalized
    so they won't fall behind in school lessons.  (Phone number and some
    locations are in note 187).
                               
    I only know indirectly of scoliosis, AJ has some vague spinal
    "abnormalities", that at one point was a questions of scoliosis, but
    aparently is not at this time.  We deal with one of the "notable"
    orthopedic doctors at Umass.  Unfortunately with fame come the
    difficulty in getting time on his calendar!
    
    I have a friend who spend a good portion of her younger years in body
    casts, and in and out of Children's hospital in Boston for multiple
    orthopedic defects, and still raves about its care even as an adult.
    
    Once during a stay at Umass Medical I saw an older teen girl who had
    the rod surgery.  She was barely able to walk before the surgery, let
    alone stand up, and after surgery did remarkably well.
    
    I would recommend a second opinion before any invasive procedure,
    braces may be a more comfortable option if the condtion responds to it.
    
    Lyn  

    Two different acquaintances of my daughter have scoliosis -- one
    had the spinal surgery and is doing fine, the other opted for a
    chiropractor and is also doing fine.  They're both around 19.  
    
    --bonnie

    We have had a second opnion. We saw Dr. Hall at the Children's Hospital
    in Boston, and Dr. Davis Clark with the Hospital in Concord NH. Our
    Medical plan is Matthew Thronton and they suggested that we see their
    specialist also. Both docotors new each other, and both spoke very
    highly of each other. My daughter, Robin, felt just as comfortable with
    Dr. Clark in Concord, so I think that is where she will be going. We
    would have liked to stay with the doctor who had been following Robin
    for the last 10 years, (the one who put her in her brace for four
    years) but he specailized in lower back curves and Robin has two curves
    in her upper back, so he referred us to Dr. Hall.
    
    Robin has just started to have trouble breathing, and fainting. At this
    point I do not think that a chiropractor would be able to help. Up to
    this now she has not had any pain associated with scoliosis. When we
    first started taking her to an orthopedic doctor (when she was 7) I
    remember a physcians assistant telling us not to be fooled by a
    chiropractor. He said they do great work for certain kinds of back
    problems, but when the bones grow crooked a chiropractor can keep a
    person out of pain, but can't do anything about the crooked growth. Up
    to this point, that made a lot of sense, and Robin did not have any
    pain so we have not seen a chiropractor. I have always thought it was
    foolish to HAVE to go to a chiropractor 3-4 times a week just to be
    able to function, while the rest of the time the pain is almost
    unbearable. (Just my thoughts, I would hate chronic pain.)
    
    Robin was braced for four years. The brace did its job while she was
    growing, but now a brace would not do any good, her bones are
    settleing. She is almost three inches shorter than she was a few years
    ago (5'7" to 5'4 1/2").
    
    Anyone know about Dr. Clark in Concord NH? We still have plenty of
    questions to ask.

    Hi!  Ordinarily I just read the various notes posted here but in this
    case I felt I had to respond.  I also had the surgery but that was 
    in 1979.  This condition is treated very differently than it was
    in 1979.  I had my surgery performed at Children's Hospital in Boston.
    At that time I was in the hospital for 2 weeks (4 days of intensive
    care) and then home with the body cast for 6 months.  From what I read
    and heard as of late, has been that patients are up and walking within
    2 days of the surgery and cast is a removeable one (so the patient can
    still shower).  The best source for support is the National Scoliosis
    Foundation - a nonprofit organization committed to educating
    professionals and the public about scoliosis.  They are located at
    72 Mount Auburn Street, Watertown, MA  02172 (617)926-0397.  If you
    call they can send to you for a nominal fee information all about 
    scoliosis as well as add your name to the mailing list to receive
    their newsletter "The Spinal Connection".  I hope this helps.  Oh...
    one last thing last time I was in Childrens Hosp. Orthopedic floors
    (Summer of 1991) they had a pen-pal situation set up for patients
    to participate in.  I hope this information helps a bit.
    
    

    Glad you like the National Scoliosis Foundation, and their newsletter.
    I was the editor of it for a few years.  I quit when I got pregnant,
    since I knew my time would be more limited.  
    
    I too had surgery, but at the Alfred I. duPont Institute in Wilmington
    Deleware.  I had it in 1974 and my sister had it there in 1977.  We
    don't have rods in our backs, but rather bone chips from our hips were
    placed in our spines to create the fusion.
    
    If you have a serious curve and have had surgery recommended, I
    certainly think you should get a second opinion.  (Actually, most
    insurance companies require it anyway.)  In my case, my curve was
    progressing very rapidly and I was told I would have trouble breathing,
    have a lot of pain, and be in a wheelchair by the time I was 40.  Not a
    pleasant prospect to a 15 year old.  (Even less pleasant as I get a
    *lot* closer to 40!)  
    
    I knew two women in my town who had really bad curves and were in a lot
    of pain.  I know that made my parents a lot more interested in the
    surgery...  One of them is about 65 now and is in a wheelchair.  The
    other is nearly bent in two and is probably only 55.  Every time I see
    them I feel like it could have been me.
    
    Today I'm very healthy.  I did have a lot of back pain when I was
    pregnant.  I get tired when I walk for long distances.  But I know I'm
    better off, given my curvature at the time.
    
    I've sent mail to the basenoter off line, but am glad to chat with
    anyone about this.  I was the president of the Scoliosis Support Group
    of NH and know people who are willing to visit scoli patients if they
    have the surgery in Concord, NH.  (That support group is no longer
    active, by the way.)
    
    judy

    Scoliosis screening is done in the schools in many states.  Sometimes
    the screeners aren't that experienced in screening, and send home
    messages telling parents to contact their children's doctors.  If this
    happens to you, I encourage you to remain calm.  Many times a doctor
    can tell that it is only a slight curvature that is well within the
    normal range when a less-experienced screener cannot.  
    
    judy

    I can still clearly remember the school "screening" we had back 
    in 1966 (7th grade).  During P.E. one day, half of the students
    (girls) removed their blouses and bras (those who had one :^),
    while another girl ran a piece of chalk, lenghtwise down her
    partners spine.  The gal I did, Debbie, had very very nice "S"
    from neck to hips.  She wore a neck/back brace for the next four
    or years. I always felt she hated me because I was the one who
    discovered the problem.  
    
    I was very dissapointed that she wasn't at our 20 year reunion,
    to find out for sure (and see how she is doing).
    
    I wonder if actual medical people are doing the screening these days.
    
    Jodi-

    Wow, I've never heard of other students doing it!
    
    Generally it is the school nurses, the PE teachers, and/or volunteers
    from the PTO.
    
    When I witnessed this, the boys would remove their shirts and the 
    girls would wear body suits or bathing suits.
    
    judy

It is required by law (in Massachusetts) that this be done by medical staff.
Either the school physician or the nurse. Usually the PTA has a few mothers
who are nurses and they help the staff nurse. I can't ever recall the school
physician donig anything other than phisycals for High School athletes.

    I have two sort of related questions about AJ (he's 5-1/2 now)
    
    At his last check with his orthopedic doctor, the term "fragile spine"
    was used.  No further explaination, except the doc said to encourage
    him to play an instrument instead of playing sports.  The doctor, who
    is well know because he is a Boston sports team physician, never said
    the word scoliosis, but said his spine is "abnormal".
    
    Second, how do I address his HORRIBLE POSTURE?  He really sits very
    slouched over most of the time.  I have concerns this may affect him
    permanently, the curved upper back and rounded shoulders.  He looks
    like an old man!  I had him CORED by the school department and this was
    something the O.T noted in her report.  This was along with the fact he
    sits on the floor with his knees spread beside his body, not under in a
    true kneeling.  She said this thing with his legs shows poor muscle
    tone.
    
    Ideas anyone??
    Lyn

    
    I was diagnosed as having scoliosis, however not severe enough to
    require surgery.  The docter stated that because of the curvature of
    the spine, it would make it difficult for me to stand up straight.  My
    parents were in the office, and boy was I relieved to hear that.  I was
    so tired of hearing "stand up straight"!!
    
    To this day, my husband is constantly telling me not to slouch...which
    really irritates me.  It is very uncomfortable to try to sit or stand
    straight with my shoulders back.
    
    I would suggest you contact your doctor and question what he meant by
    fragile spine.  
                    

    > This was along with the fact he sits on the floor with his knees
    > spread beside his body, not under in a true kneeling.  
    
    I'm not quite sure what this means.  You mean he puts his rump on
    the floor, with both knees (and feet) on one side?  Or that he
    puts one foot on one side and one foot on the other?  
    
    --bonnie

    his position is that his rump is on the floor, his feet are on the
    floor beside his body.  One resident called it a "W" position.  Guess
    that's the best description of what it looks like looking down from
    above.
    
    	      left leg.. \_| o |_/ right let
                      knee  body  knee
    
    crude, but the best we can do at present.
    
    He also will frequently sit on one of his legs, and I worry about
    problems from having the blood circulation cut off.
    
    By the way one of his (male, not that it really matters) teachers
    commented on how rounded he keeps his shoulders.
    
    My posture is usually horrible, I can only wonder if he's got something
    inherited?
    
    Lyn

    
    My wife has mild scoliosis, and it is definitely inherited as her
    mother and aunt both have it to varying degrees.
    
    Patrick will sit in a 'W sit', less often now than a few months ago
    before he was walking. The PT and OT who saw him for his arena have had
    us work on ridding him of this bad habit. They think he does it because
    his muscle tone is his legs is low because of the hip problems he had
    at birth. His muscle tone is getting better, though.
    
    If you'd like I'll post what we were told to do by the OT and PT.
    
    Chris
    

    That's interesting, I sat that way all my life and nobody ever
    remarked on it except to say how flexible I was!  Kat sits that
    way a lot too, including when she had therapy for her arm, and the
    PT never mentioned it.  (Actually her preferred position is a
    side-split, or on her head, but . . . ) 
    
    Maybe it's because she was older.  Dunno.  
    
    I think I'd be tempted to just get him involved in gymnastics or
    something to improve the muscle tone and figure the sitting
    position will take care of itself if that's the problem.  But
    that's just my attitude.
    
    --bonnie

    
    Re: Bonnie
    
    With Patrick, it was a little more than just an 'attitude'...maybe
    philosophy is a better word. He was born with both hips dislocated and
    had to wear a harness for nine months. They look fine now but we're
    still a bit more aware of his posture because of it.
    
    When I say 'work on it' I just mean discouraging that position for more
    than a few moments. It's not like it's a exercise drill or anything
    like that.
    
    This is getting a bit far off the topic so I'll shut up now 8^)
    
    Chris
    

Mark's posture was remarked on by a pediatrician when I took him in once for
some infection.  I was asked to bring him back and did so for a few visits.

Mark has a slightly curved spine, slightly rounded shoulders, flat feet, 
pigeon toed, etc.  Well he doesn't really look THAT bad :-)  He just has a
ton of minor structural defects in his skeleton, none of which are life
threatening and don't cause him any particular problem.  Of course, later in
life they could.

The pediatrician said that there is a chance to correct some of this until
he is around 16 when the skeleton becomes more rigid and set.  He recommended a
set of exercises which Mark actually doesn't mind doing.  I'm not sure how
much they accomplish but they certainly don't hurt either and we like to do 
them together.

I try not to nag him about his posture but to remind him gently so that he
thinks about how he is carrying himself.  He knows, after all, what the dr.
has said.

ccb