Scoliosis
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Sept 2011
I have a 10 year old boy who was diagnosed with S shaped idiopathic
scoliosis when he was 8. I understand that there is now a blood test
which will show the likelihood of progression which can be taken after
the age of 10 -- does anyone have any experience with this? At the 9
year appointment the curve hadn't progressed, but as we approach the
10 year appointment I can easily see progression, and am getting ready
for a 23 hour/day brace recommendation. Any advice welcome! Thanks,
another worried mom
Sorry to hear about your son's scoliosis. Maybe our
situation is not comparable, but we took our daughter to a
very good osteopath who was able to reduce the curvature
such that it was no longer detected in a school check up.
Her name is Catherine Henderson, and she has an office in
Albany. The treatments are expensive, and we were fortunate
to be able to afford it, so I don't know if it's an option,
but figured you should know. She could assess whether she
thinks such treatments could help.
Anon.
Scoliosis, except in very extreme and unusual cases, is just
a description of the spine in relation to some imaginary
''perfect'' spine. You can assume, for example, that among the
people giving you this ''diagnosis'' for your son, some of
them have ''scoliosis'' by their own definition (and they
aren't living in braces). Where did they get this definition
from? Someone gave it to them, and now their job is to pass
it on to you. Do you want your son to live in a brace so
that these people will have done their job well? No, of
course not. Just think: every time someone ''diagnoses''
something, money moves from your pocket to theirs in one way
or another. Please watch this video on YouTube:
http://www.youtube.com/watch?v=cGma5bzOGww
When you go to this video, along the right side of your
screen you will also see lots of other videos with exercises
for aligning the spine. You can also search online yourself
with terms related to ''Exercises for Scoliosis'' and similar.
Shame on the professions that bandy this word around, so
that it lives and festers in the consciousness of the people
they're supposed to be helping. Let them go their way! Let
your son live his life--I bet he's healthy and gorgeous!
Don't worry, or let him worry! There are many, many
professional people like the one in the video--especially in
this area!--who can fill you both up with positive, healthy,
problem-shrinking kinds of advice and instruction. Please do
not make the exchange you had about all this be
life-defining in any sense. Seek out the positive voices
that will help you neutralize the ones you've heard so far
on this subject, and everything will be fine.
Please Learn About Exercises for Spinal Alignment
Please check out Dr. Mohammad Diab at UCSF. He has an
excellent track record with young scoliosis patients and
has a ton of ideas/treatments for young children. The best
part about him is that he defines mother's of his patients
as part of the medical team and understands that mother's
intuition is more valuable than most tests.
http://www.ucsfbenioffchildrens.org/cgi-bin/expertDetail.cgi?doctorid=26572
anon
I have scoliosis and wore a Milwaukee brace for 2.5 years at the most
inopportune time, from ages 13-15, 23 hours a day. My curves were
moderate--not severe. I had a lot of back pain and soreness, which no doctor
assessed for or made recommendations about, and my parents weren't
educated about any kind of alternative treatments (yoga, massage,
chiropractic).
In adulthood, I started doing yoga and found relief from the pain for the first
time. Building core (abdominal) strength, and twisting poses, were especially
helpful. I saw my first chiropractor, a warm Italian woman who was also pretty
intuitive. My curve began to improve noticeably, even though I had stopped
growing. She noticed that my curve was significantly better when I was
consistent with doing yoga. It slipped back when I wasn't as rigorous with it.
I've learned that the curve isn't static, it can get better or worse depending on
stress, sleep, and how you take care of yourself. I'm not sure where she got
her information, but she said braces weren't being used as often. At the time,
she was treating a teenage girl for scoliosis whose parents decided not to go
the brace route. More recently, a chiropractor I saw in the bay area also
noticed my curve improve with yoga and chiropractic visits.
I'm not abreast of the latest technologies, but as a 33 year-old woman, I wish
I had someone to advocate for other ways of healing besides the brace when I
was 13. It was clunky, uncomfortable, and did nothing for my back pain. I'm
not actually sure how much it helped. No matter what you decide, I would
recommend finding a really good chiropractor to consult with--someone who
has experience treating scoliosis.
Molly
I did not see the original post, but would like to second
the suggestion to reach out to Dr. Mohammed Diab at UCSF.
He is currently treating my 7 year old daughter for
scoliosis and we are very pleased with his care. In general,
I would recommend getting multiple opinions in a scoliosis
diagnosis, because there are many different paths to
treatment, and many opinions out there. For young children
with curves between 25 and 35 degrees, and significant
growth ahead of them, there is a new procedure called
''Vertebral Body Stapling'' -- google it to find more info. I
would also like to mention a recent breakthrough in the
field of adolescent scoliosis (which would include a 10 year
old onset case, such as your son's) -- there is a new,
non-invasive genetic test that can predict whether a
particular adolescent's curve will worsen. This could give
parents an informed perspective as to whether it is
worthwhile to pursue bracing. According to what I have
read, in many cases, perhaps a majority of cases, of
adolescent scoliosis, the curves are unlikely to worsen
significantly after diagnosis. The explicit goal of bracing
is to hold a curve, not correct it. So if a curve will not
worsen, why brace? Google ''NY times scoliosis'' and you find
an article titled: ''Scoliosis Test Lets Children Avoid a
Brace'' to learn more. You may need to keep asking to find a
doctor who uses the test, since it is such a new
breakthrough. Good luck to you -- I know how confusing this
can be.
Mom in a similar boat
We are watching 10 degrees of scoliosis in my 11 year old who is also doing
Alexander Technique for ideal back posture and health. My child's orthopedist,
Dr. Tseng, in Berkeley and in Oakland, is excellent. He has a fellowship in spine
and his training is top-notch. His is a conservative approach, and he says that
if
my child were to need bracing, which is not like the former medieval back brace,
but a band around the torso, he will recommend doing so if my son has a 30
degree curve.
Straight Up
Sept 2011
I've been just told my 15 almost 16 year old has 20-30
degree scoliosis. I'd appreciate support advice such as
physical therapy, other exercise (especially yoga),
emotional support, and how to parent. Personal experience
really appreciated, and suggested doctors. We are following
up with orthopedic doctor; I don't know what's next. Thank
you so much.
Another worried mom
Hi AWM, Both my kids had slight curves and were watched for a couple
of years by a doctor at Childrens Hospital. It seems that no
treatment is taken until the curve is past the 25% mark, or if it's
20degrees and rapidly getting worse. Here's a great link to get you
started reading up on it. Medline Plus has links to many other great
authorities on Scoliosis, like the American Academy of Orthopaedic
Surgeons and the Mayo Clinic.
http://www.nlm.nih.gov/medlineplus/scoliosis.html I think in the end,
you most likely won't have any medical treatment plan. But my kids love
having hot baths and massages, especially when one side of their back
muscles ache more than the other from sports or skateboard crashes. I
have a great masseuse from Israel who believes in affordable massage if
you'd like her name and number. Good luck.
an
You might want to look at the website for specialized PT for scoliosis
and kyphosis. www.scoliosisrehab.com
My daughter received a lot of benefit from their program for her
kyphosis. good luck and feel free to email me if you have questions.
We took our daughter who was diagnosed with scoliosis to Catherine
Henderson who is an osteopath trained in England. Great results in
about 6 sessions, so much so that at a scoliosis screening at school it
was no longer detected. Our daughter was a bit younger (12) when
initially diagnosed. May be very worthwhile looking into. Catherine
has an office in Albany and her phone number is (510) 526-5256.
Anon.
Our 14-year-old daughter was also recently diagnosed with
moderate-to-severe scoliosis (an ''S'' curve of 30+ degrees on each
curve). I would be happy to share with you what I know.
Brenda
Hello there, My daughter who is now almost 21 years old was diagnosed
with a 38 degree scoliosis when she was 15 or 16. By the time she was
officially diagnosed, it was too late to do a back brace. She did go
through a terrible year of intense pain (junior year of high
school)that has since resolved. During the year of pain, we had a team
of doctors (James Policy of Oakland's Children's in fabulous),
chiropractor, pain specialist, physical therapist and an acupuncturist.
Ultimately, it was the acupuncture that gave her the needed relief. Now
she just has to be super careful about her back (she can't lift
anything heavier than 20 lbs, she can only do short drives, etc).
Mostly, the ''limitations'' are insignificant and do not interfere with
the wonderful quality of her life. She's a happy, healthy junior in
college.
I'm sure everything will work out with your child as well. Feel free to
contact me via email for more, if you would like.
k
March 2011
My 10 year old daughter was recently diagnosed with scoliosis and will
be required to wear a brace 20 hours a day ''until she stops
growing.'' So we're looking at 4 years or so, I imagine. She has a 26
degree curve and the goal is to keep it steady while she grows so we
don't have to have surgery to stabilize her spine. I'm kind of floored
since nothing like this runs in my husband's or my families.
I would like to know what other sorts of supportive therapy (besides
the brace) we should be looking at for our daughter. I imagine that
the brace wearing will affect her core muscles in the long run. Do
they have pilates for kids? Should we consider yoga and/or swimming,
too? She's not a sporty kid but of course she does PE in school and
she loves to ride her bike. She can take off her brace for PE, bike
riding, and exercise, but really needs to keep it on most of the day.
I would love to hear experiences and advice from families who are
living with this.
L
Hi, I haven't gone through this with my own child, but I was
a kid who had scoliosis. I wore a brace all through junior
high school and into my first year of high school. It seemed
like all my friends either were getting braces or their
parents were getting divorced, so there was no one I could
relate to on this (or so it seemed, maybe that's just the
feelings of being that age!).
I wound up having a brace that went from my chest to the top
of my hips, so I while I couldn't bend at the waist it was
not obvious (it turned out later most kids never knew I had
it, even though I felt like it was very obvious). I took
what was called an ''adaptive PE class'' (for kids with
disabilities) which allowed me to leave the brace on -- I
could have it off for an hour a day and I didn't want to
waste that on PE class (I think I'd take it off for an hour
after school instead). Taking the PE class with those kids
was an eye opener, and I think it benefited me in a lot of
ways.
There is a book called Deenie
(http://www.worldcat.org/title/deenie/oclc/800751) which is
about a girl who has scoliosis. It's a book for tweens, and
you might read it before giving it too your daughter. It's
Judy Blume and written in 1973, so I don't know how well
it's aged.
The good news is that I got through it. I wasn't athletic at
the time, but I am now (age 43) and have no back troubles
and no regrets about wearing my brace.
I'd be happy to talk to you and your daughter if you like. I
don't have any medical advice to offer, but I can talk about
what it was like in the ''old days.''
MP
I hope the MD who recommended the brace also stressed the importance of
Physical Therapy! It's important that your daughter have a few sessions of PT to
learn proper/safe body mechanics (lifting, backpack fit, etc) to avoid injuring her
back, and strengthening and stretching exercises so that her musculature can
support her better. She needs to see a PT first rather than a gym person as PTs
are specifically trained in exercise prescription particularly with people who have
underlying medical conditions and musculoskeletal dysfunctions. Please get a
referral for a PT first, then she could do pilates or swimming or some physical
activity that she enjoys, but she'll know how to do it safely!
PT mom
Jan 2011
I have had Scoliosis since my teen years but it has progressed and causes
me significant pain. I saw a Dr Slabaugh (Oakland) about 20 years ago - I
am now 50, but he didn't help. It appears one leg is shorter than the
other, one hip higher than the other and I have upper and lower thoracic
curves. They are both pronounced - I have a large hump on upper right of
back, one lower shoulder, etc. and cannot sit for long, sleep for more
than 5-6 hours, stand for long periods, carry bags, or sit comfortably
on a flight for longer than an hour.
The pain and associated problems affect me every day. I would like to find
a doctor who has success with treating Scoliosis and the related problems
(lungs compromised, hip pain due to lack of symmetry, lower and upper back
pain, sometimes crippling back pain. Sacroiliac Joint pain, misaligned
neck with pain etc. repeated falls due to the longer leg hitting the
ground first, etc.. I also notice now that my 14 year old daughter has a
curve in her back from the side profile, and am concerned that she too may
have Scoliosis. If you have dealt with Scoliosis or know of someone who
has, and if you know of a great doctor anywhere in the bay area, I would
love to hear from you. Thanks
Want to be pain-free!
I was told I had scoliosis since I was a teen also... I recently
started going to ALIGN Chiropractic Center and my back pain is almost
completely gone. I learned that I have a short leg, which was causing a
pseudo-scolisis. I've been doing decompression therapy for a month now
and my back feels stronger then ever. The Doctors at ALIGN have
experience working with both teens and adults. 510-
654-2207; alignchiro.com
anon
I would advise you to avoid chiropractors and other alternative
treatment modalities until you are evaluated by an orthopedist
physician who specializes in scoliosis. What you describe is not
to be taken lightly and is likely to worsen as you age and the
quality of your life continue to deteriorate. UCSF has one of the
world's best spine services and they routinely treat adult
scoliosis. You need to be evaluated with treatment recommendations
from experts in this in order to make an intelligent decision. If
I remember correctly from your original post, you were
inadequately or not treated at all as an adolescent, when you
should have been, and this is causing your present problems
because your curves are not stable, they are deteriorating. Here
is the dept. website with contact information:
http://www.ucsfhealth.org/clinics/spine_center/index.html
Here is information about scoliosis:
http://www.ucsfhealth.org/conditions/scoliosis/
Best of luck
living with the same thing
Nov 2010
Dr. Policy of Children's Hospital Oakland recently diagnosed
my child with idiopathic scoliosis and has recommended a
brace be worn for the next 3-4 years for 20 hours per day. Would
be very appreciative of any comments regarding Dr.
Policy and/or this treatment for scoliosis. Seems a very
extreme protocol, especially with no guarantees of avoiding
surgery. Worried Mom
I would get a second opinion. When my 14-year-old son, then a high
school varsity runner, was first diagnosed with adolescent idiopathic
scoliosis and a 23-hour brace was recommended, we both said ''no way!''
We switched to Dr. Peper Slabaugh of Webster Orthopaedic Associates for
scoliosis care. My son wore a Charleston nighttime brace for a few years
while continuing his active lifestyle and high-intensity athletic
training. At 18, he completed his growth with the Cobb angle unchanged.
His scoliosis now is stable and no further treatment is necessary. I
highly recommend reading ''Scoliosis and the Human Spine'' by Martha
Hawes. I found it very empowering.
Been there
While I don't know a lot about using a brace for scoliosis (I thought
that was the dark ages), this protocol does seem extreme...I DO know,
however, that Pilates exercise is very effective in maintaining
scoliosis. You don't say how old your child is. If he/she is old enough
to pay attention and follow some direction, this could be helpful to
balance the muscles in the back and hips. I know of a trainer in
Alameda(Don't know her name...sorry) who specializes in scoliosis. Many
Pilates trainers around the area are very skilled in working with
people/kids with scoliosis.
It would be worth checking out before agreeing to the extreme of 20 hours
in a brace. Good luck.
mom w/ scoliosis son
I have recent experience with Dr. Policy, and a diagnosis of
idiopathic scoliosis. We got a second opinion at UCSF, which
for us was very relieving, and have also been using some
other practitioners that have been extremely helpful. I'm
happy to talk to you personally about our experience, I've
been quite involved in the process for the last several
months and have quite a bit of information that I think
could be helpful. Please ask the moderator for my e-mail
address.
anon
Sept 2009
My 14 year old daughter just had a growth spurt and now has a
19 degree curve (S shaped actually) in her spine. I had this
as a preteen and did exercises which corrected it a lot before
I stopped growing. We have maybe a year window for my girl. I
am looking for both a great sensitive pediatric orthopedist
(prefer a woman - are there any out there now that Monica Kogan
has moved to Chicago?) and a physical therapist specializing in
Scoliosis in teens. please share your ideas and referrals!
Help Us Correct Scoliosis
John King
Sports and Orthopedic Specialists
547-2102
6300 Telegraph Ave, Oakland
Hi, have you considered or thought about a Chiropractor for
your daughter? I have lumbar scoliosis and have seen orthopedic
docs and massage therapists. But what really remedied the pain
I have experienced most of my life,(I'm in my 40's now)since I
was diagnosed with scoliosis at 13 yr of age, was a
Chiropractor, who I have been seeing for almost 15 yrs and I
have my family see him for treatments. He can probably help
your daughter and give her gentle yet aggressive exercises to
ease her spinal curve also to avoid future pain and progressive
curvature as she matures. If you chose to go this route, my
Chiropractor is Dr. Steven Jakobsen, located in Lafayette, his
office number is (925)283-8140. Good luck!
Denise
I highly recommend Dr. Peter Slabough in Oakland. After
another orthopaedic surgeon scared my teenage son with spinal
fusion surgery threats, Dr. Slabough's conservative approach
worked very well for us. My son wore a nightime brace to
correct his scoliosis for several years (until growth
completion), without any changes to his active lifestyle
(running on his high school varsity team, cycling, backpacking,
traveling the world...)
been there
June 2009
Hi,
Our daughter was just diagnosed with scoliosis, and we have our first
appointment with the orthopedic specialist this week. So I don't know
much yet -- how much of a curve (although I think minor at this
point), treatment recommendations, etc. My question at this stage is
really about how to talk about this with my daughter. Most advice
online is focused on adolescent children facing a brace/surgery. I
think I have good instincts on this, but it's always helpful to hear
from others who have already gone through something. And of course, it
would be nice to connect with other families who are dealing with
this. Anyone out there have any experience with scoliosis with their
young child?
Many thanks
Contact the Scoliosis Association of San Francisco. It is run by Linda
Racine, who has
scoliosis. They have meetings They have a yahoo group. This is her
website:
http://www.scoliosislinks.com/
(650)726-0341 scoliosissf@comcast.net
Also National Scoliosis Foundation (www.scoliosis.org). The National
Scoliosis
Association is another well known group:
http://www.scoliosis-assoc.org/
The BPN archives have posts to previous questions on scoliosis (in
case you haven't
searched them):
http://parents.berkeley.edu/recommend/medical/scoliosis.html
Best of luck to your family. Your daughter is VERY LUCKY that you
discovered her curve
so early and she is getting treatment. Hopefully she will not grow up
like some of us
have with very visible and nearly disabling deformities.
anonymous
Hi there!
Some people have actually have good results with
Feldenkrais. Get her on a swim team to stabilize her back and put
her in dance classes. Consider gentle chiropractic care too...I
love Reuben Ziegler in Berkely for chiropractic. Early age and
small curve that is just a ''C'' curve, not an ''S'' , she may be a
candidate for an electrode implanted on the concave side of the
curve, which she activates at night, and in 2-3 years it tends to
reduce or stabilize the curve.
Wish you well!
Our 7-year-old grandson, with 15% scoliosis, was just found (via MRI) to have an
attached spine. Unusual, but not extremely rare, his spine is attached at the bottom, so
as he grows, the spine cannot grow as fast, and starts curving.
The remedy, which he is having next week, is a fast and simple (we are told)
arthroscopic procedure to detach the spine at the bottom. Either 0 or 1 night in
hospital, two weeks of taking it easy afterwards.
john
Hi there,
I am in my 30s and have kyphosis which is similar to scoliosis
except my spine is curved forward. I saw the note about
swimming which was the same advice my parent's got. Being a
type A personality, I became a competative swimmer swimming 4
hours a day, was recruited to swim for college, but eventually
ripped up my shoulders so badly I had to quit swimming my
second year of college and haven't been in the pool since --
too painful. My kyphosis feeds into my cronic back and neck
pains (many years of PT and wearing a back brace didn't ever
seem to make a dent in correcting the curve of my spine and I
had reputable doctors at Boston's Children's hospital) but my
swimming injuries (not the kyphosis) are what cause most of my
pain. All this to say, have your daughter swim in moderation!
She's only 5 now but if she takes to swimming, monitor the
amount of yardage she is doing and inform her coaches of her
scoliocis so that if she tells a coach she is experiencing
pain, she is told to stop rather than the ''no pain no gain''
line I got. Swimming gave me many gifts of friendship,
discipline, determination which I hope your daughter is able to
experience, but I guess you really can have too much of a good
thing.
I miss swimming
April 2008
I have had scoliosis since I was young...never bad enough for bracing or surgery,
but now that I am in my early 30's it bothers me frequently. I practice yoga and
am in OK physical health, but the muscle imbalances are taking their toll. I need
recommendations for good orthopedic doctors who specialize and/or have experience
with treating scoliosis in older patients. Thanks.
Feeling old with a bad back at 31
Contact UCSF spine service
http://www.ucsfhealth.org/adult/medical_services/spine/
They are the best in the country for older pts and for revision
surgery.
anonymous with scoliosis
Have you tried Pilates for scoliosis? I work at Synergy Fitness
Pilates Studio on Solano ave in Albany. We have a lot of clients
(and 2 of our trainers) with varying degrees of scoli. Your
trainer in Pilates will design a program specifically for you.
You will strengthen in a way that will support your body and
help you to be pain free. There are many good Pilates studios
around. If Synergy Fitness is near you, check us out,
www.synergyfitness.com
June
She's not an orthopedic doctor, but my chiropractor, Karen
Kartch, has recently helped me make a lot of progress reducing
my scoliosis, using ''The Graston Technique'' along with some
exercises. The Graston Technique involves a set of specially
shaped tools that the chiropractor (some PTs use it, too) uses
to break up old adhesions and scar tissue. Kartch Chiropractic
is at 3661 Grand Ave. near Safeway. The phone number is
510.444.4449.
At the same time, I've taken some classes called Body Balance to
re-align my posture. Dana Davis is based in Petaluma but offers
classes in Berkeley (www.sonomabodybalance.com), and Jean Couch
works in Palo Alto (www.balancecenter.com). There is also a
great book that explains the theory, with lots of helpful
pictures and exercises to start you on your way: Ageless Spine,
Lasting Health by Kathleen Porter.
Doing both of these together has really helped me change painful
patterns. Good luck!
Karisa
I was diagnosed with a 35 degree lumbar curve when I was twelve
that has on and off given me issues. As an adult, yoga was good
ritual, but I never fully recovered from my pregnancy. PT #3
diagnosed a combo of pelvic injury from pregnancy and my old
friend scoliosis.
With an amazing team of practitioners (an rockin' PT who has a
scoliosis magic- I had heard rumors of him, a loving and gentle
Rolfer, a gifted Osteopath, and a non-invasive spine specialist
MD to round it out) I have probably lost at least 10 degrees
from my curve. And I think I will lose more. I don't think any
of these specialist's gifts would have worked as strongly alone
- they complemented each other extremely well. And the PT and
Rolfer developed a good collaboration.
The pros: Little to no back pain. And my pants fit better. My
ribcage is shaped differently - its more balanced.
The cons: it was time consuming and expensive, only the PT
would bill my insurance. In the gym I wished I had focused on
more Pilates and swimming instead of my old weights routine. I
got aggressive and ended up with a bulging disk in my neck, and
then headaches. Now in healing mode and definitely mending, I
see there is an integration in the body of where the curve
moves to. It doesn't just disappear, it needs to work its way
out. And I wonder if I did too much work too fast. When I go
back for more it will be at a slower pace.
I wish my parents had taken me to even just one of these
practitioners when I was 12 and 13 and newly diagnosed.
Please feel free to contact me to discuss further. Take care,
Julia
Sept 2007
I am looking for a chiropractor experienced in treating adolescent idiopathic
scoliosis in Walnut Creek area.
Rasa
Caution! Adolescent idiopathic scoliosis is a potentially serious (and
crippling) condition and needs to be evaluated and treated by a specialist. The
proper specialist for such is an orthopedic surgeon with special training in
scoliosis. Many teenagers, if the condition is treated (properly) early, can
avoid the extensive surgery which is often needed in adulthood if the condition
has not been arrested in time. Dr. Peter Slabaugh, in Oakland, treated my own
daughter and is one of the best specialists for scoliosis in the Bay Area.
This condition is not one which should be handled by a chiropractor.
Robert A. Fink, M.D.
I obviously can't add more than what the doctor said in response to
this - he had obviously sound and learned advice. But I was
flabberghasted that this was even a topic and thought, hey, let's
reiterate how serious scoliosis IS. Because a lot of people on this
board seem to have a mistrust of doctors and will try all sorts of
weird alternative medicines - which is fine, I guess, for certain
conditions, but NOT SCOLIOSIS.
You are doing your child a GRAVE injustice by not having an orthopedic
specialist treat him/her for his/her spinal curvature. I'm not a
doctor - I'm a woman who's now 40 that had scoliosis diagnosed
basically at birth because both my parents had it. So did my
brother. But I got the doozy. My scoliosis didn't seem so bad when I
was say 10, or 11...to the casual onlooker. But as I grew, my spine
twisted and curved more. My parents knew I should have surgery - but
they kept postponing it(reasons will be stated later), and hoping
swimming would fix it, and then a back brace...and then a weird
machine that shocked my muscles at night and was supposed to make the
spine grow straight. Sometimes those things can work for scoliosis,
but sometimes they don't. In my case, they didn't.
When I was a junior in college, I couldn't wait anymore. I had an
internship in a 9 to 5 job and my back was numbing up all the time. It
freaked me out. I went to a doctor in Boston and was informed that in
5 years I'd be in a wheelchair because my scoliosis was
progressing. Shortly after that, I'd have respiratory problems because
my spine would start crushing my lungs. So the next year I had major
surgery - my spine was fused, and 2 rods were put in it. It wasn't
fun, it was painful and I had to learn to walk again, but I did get
taller - losing some of the curve stretched my spine. Now I am
basically fine, but I still have a curvature - my curve was just too
bad; I probably should have had the surgery earlier. But the real
reason I didn't have it earlier is because my PARENTS didn't want me
to because they wanted to try everything BUT the surgery the doctors
were recommending so that my competitive swimming career would be
extended (I was good - really good - and god for! bid we mess up THAT
for the sake of something permanent like a back). I'd be taller now
and have less of a lingering curve if my parents had just followed the
doctor's recommendations in the first place, and not messed around.
So if the doctor's advice didn't scare you straight - maybe my
experience will. Don't mess around with your kid's back. GO TO A
DOCTOR - not a chiropractor. I'd NEVER let a chiropractor touch my
back. EVER.
--I set off metal detectors, but I can still breathe and don't have a wheelchair
i didn't see the original post, but just doctor fink's.
i applaud you for seeking alternative concepts for your daughter's
care. there are other western countries that don't automatically send
kids to surgeons, they send them to clinics where they get intense
exercise, education, physical therapy and body work.
i was diagnosed with adolescent scoliosis at 12 or 13. the docs wanted
to do a brace, and basically my mom blew it off because we moved to
piedmont from the midwest and she didn't want me to start a new school
with a brace on. i don't know if that would have made a difference.
i have tried all different kinds of things on my back, and then i
found rolfing. big change in my life experience. and then i found a
physical therapist who has created this whole system with the
spine. and then those two worked together on me. pretty amazing stuff.
ida rolf created her system because her son had scoliosis. the rolfer
i found is very gentle and nurturing, and the best body worker i've
ever been treated by. and i think she had worked on an adolescent
before. i wish i had been treated be her as an adolescent.
rolfer: susan solari 510-225-5305
pt: john king at sports and orthopaedic specialists
best of luck to you.
julia
I was diagnosed with scoliosis by a chiropractor at 40 years of age--something
never picked up by other doctors nor pediatricians. I saw the X-ray, so it was
real--I had a 15 degree curve. After 3 months of chiropractic treatment, my curve
was reduced to 7 degrees (I saw my X-rays overlay each other). My point here is
that there have been some strong opinions shared about this topic and I think an
individual (or their health care advocate) needs to research options--definitely
before choosing surgery! I my case, chiropractic care was effective.
b
I think that you should take dr fink's suggestion seriously and have your child's
scoliosis monitored by an ortheopedic specialist specializing in scoliosis. As a
pilates practitioner who works both on adults and children with scoliosis- trying
to balance the musculature- i would like to emphasize that the causes of scoliosis
are much debated (have been to a conference on the topic ) and it can involve
surgery if severe. i would feel very uncomfortable having a such a young client if
he or she was not being monitored. Something you need to bear in mind is that with
scoliosis the bones can become shaped differently from one side to another and you
need a doctor with x-rays to diagnose and distinguish between functional scoliosis
and structural scoliosis. I have to really wonder if having your spine adjusted
would help with this- when you have smaller bones on one side and larger on the
other? A curious thing i learned is that scoliosis (besides its genetic conponent)
is particularly prevalent in dancers and gymnasts- leading to questions and conjecture
about too much flexibility being possibly a contribution cause. I think I have
helped a lot of people with scoliosis to feel more confortable, but where it is
structural it can't be changed. the best i can hope for is to help prevent it from
progressing- and even this is an area where there is not much research. I try to
balance the muscles enough so that the person no longer feels the discomfort it may
be causing. Generally, i notice that clients with scoliosis have really weak
erector spinae, and need to work one side of the body differently from the other so
i start by doing a drawing of that person's body and mapping the imbalances so I
can work that person very specifically where needed.
Beware of any health practitioner who claims they can cure scoliosis.
i am glad to answer questions (510-508-1408) but i do think your first step should
be to find the appropriate doctor to monitor your child before you start looking
for alternative therapies.
andrea
I'm sorry to have missed your post, but I've read the previous responses and
would like to share my experience. I was diagnosed with ''moderate''
scoliosis in my teens and received nonsurgical treatment (traction, brace)
until I reached 18. At that point I was told my curve would remain stable
during adulthood and no further treatment was needed. I didn't have any
scoliosis-related back pain in my 20s, but in my early 30s I decided to start
monitoring my curve again. At that time, as my curve appeared to be
increasing, a specialist strongly recommended surgery to stabilize the curve,
otherwise later on in life I could have ''respiratory failure, etc.'' He
even questioned whether I could have a successful pregnancy, blah, blah, blah
(by the way I had my first child last year with no complications whatsoever).
Any way, after learning the risks such surgery entails, and given the fact I
was in no pain to speak of, I decided to put of the surgery, but continue to
have monitoring x-rays every year or two.
I also decided to begin chiropractic treatment, not as a ''cure'' but to
prevent further curve increases or mitigate any future discomfort. After 10
years of chiropractic treatment, my curve has increased slightly, and still
looks like a capital ''S'', but more importantly, I've been able to manage
the symptoms, so I’m glad I didn’t choose surgery. Of course, each case is
different, I have never had ''back numbing'' or serious pain, and surgery was
recommended to me in my late 20s and not in my teens. But it is also true
this surgery is very serious, requires a long postop period and has risks
(infection, future corrective surgeries, ''rod snapping'', yes I've seen the
x-rays…).
So, if you can wait a couple of years, you may want to give chiropractic or
other alternatives, such as rolfing, a try, and see whether they work for
your daughter. You can always go for the surgery if these don't work for you
within a reasonable amount of time. By the way, my chiropractor is very
conscientious and has very reasonable fees. His name is Robert Townsend with
Community Chiropractic in Oakland and can be reached at 510)708-9363. Best
of luck.
Nov 2006
Has anyone had experience with managing scoliosis? My
mother-in-law is experiencing severe curvature (66%) and often
severe pain. She does not have osteoporosis, and was never
diagnosed to have scoliosis until a few years ago. What could
have caused this?
Her doctor says surgery would only provide a cosmetic benefit.
She swims daily and does yoga which helps a lot to keep pain
away. We were wondering if anyone has had success with other
treatments, and would so appreciate any advice!
Kristine
Scoliosis in an older person may or may not be due to childhood
scoliosis. Send your MIL to a good specialist in the field of
scoliosis. I recommend Dr. Peter Slabaugh of Oakland.
Robert
I feel for your mother-in-law. I have scoliosis that's become severe, and it's
very
difficult to assimilate the changes it brings. That said, I believe her doctor,
probably
not an orthopedic surgeon, is incorrect in saying that the surgery would provide
only a cosmetic benefit. After having seen specialists the last few years to
monitor
my curve, my understanding is that the difficult surgery with its long recovery is
undertaken by patients with no further recourse ONLY BECAUSE when successful, it
does provide physical relief and stabilization.
A group to contact is the Scoliosis Association of San Francisco. Linda Racine is
a
kind, well-informed advocate for scoliosis patients (she's one herself). She'd be
good for your MIL to contact, either via the associated yahoo group, or by phone
(google to find). Also National Scoliosis Foundation (www.scoliosis.org). Your MIL
should see an orthopedic surgeon who can assess her properly and see if she's a
candidate for surgery now, or can stave it off. I was basically told, if you can
manage
without it, do. The only catch is that waiting until a much older age means a
tougher, slower recovery. If your MIL doesn't know who to see, she should
definitely
get advice from Linda Racine or other seasoned scoliosis patients. From
experience,
I can say emphatically, this is one condition where an experienced specialist is
mandatory. I've wasted time with others, called ortho surgeons on my ins list only
to
hear the receptionist unable to pronounce scoliosis! Don't go there!
Probably no one can say why she got it. Sometimes as we age, minor problems
intensify, hormones are less supportive, and things just wear out. Science says
exercise can't straighten the curve, but anecdotal evidence and even the docs now
promote it for managing the pain and for strengthening. Yoga, pilates, and
swimming have helped me. Elise Browning Miller (google her) is a Palo Alto yoga
teacher whose own scoliosis became her teacher; yoga for scoliosis is now the
specialty she's well known for. She's one person who actually seems to have
reversed some of her curvature through yoga--bazillions of hours of it.
If your MIL wants to contact me, feel free to pass on my eddress.
Barbara
August 2006
Hi, I am trying to reach parents of children with scoliosis or other spinal conditions.
Our 11-year old daughter's condition has just progressed to a point where
treatment is indicated and we would appreciate connecting with people who have
had the experience of evaluating treatment recommendations and helping their
child adjust to wearing a brace. Thanks very much.
ellen
You might try calling the Family Resource Network in Oakland.
This great organization has lots of info, parent meetings, and resources
for parents of kids with all kinds of special needs.The phone is
(510)547-7322 Special needs parent
Jan 2006
My sweet son was diagnosed with scoliosis, and now wears a
back brace. He is doing very well, but there is a spot
where the brace rubs against his skin. It has caused a raw
spot that heals and then hurts again. It has also caused
dark bruising in the same area. Does anyone have
experience with this? Is there a way to avoid the skin
irritations? We already switched to a very mild clothing
detergent. Is there a good dermatologist we might visit?
Any suggestions will be greatly appreciated.
Patti
My 15-year-old daughter has been wearing a similar back
brace for two years. She has very dry skin and a tendency
to develop exzema so the orthopedist and the peditatrician
both recommended that she wear a very thin layer of
clothing between her skin and the brace. The t-shirts made
for cyclists, that keep moisture away from the skin, have
worked very well. I got them at REI. The pediatrician has
also recommended the very thin cotton/lycra t-shirts made
by Gap Body, which are comfortable because they have no
side seams, but I don't know if they are available in men
sizes. Best of luck,
Laura
A scoliosis brace should not be rubbing the skin raw. Take
your son back to the prescribing doctor and/or the
orthotist who made the brace. It needs to be adjusted.
Robert A. Fink, M. D. rafink@attglobal.net
Hi Patti,
Sounds like a pressure sore and if the problem is not
resolved, this could really be troublesome for your sweet
son. I would contact the orthotist who supplied the brace
first. There are a number of ortho-foam-type products and/or
self-adhesive gel products which might pad the brace more
effectively where it is irritating. Also, the frame itself
might need to be adjusted for a better, tailored fit. Keep
on them until it's right. My son uses a wheelchair and has a
recurring pressure sore. Of course we watch this carefully
but, in addition, continually apply a product that we have
found is the best so far in alleviating and preventing skin
irritation and soreness: 100% Shea Butter supplied by Bare
Escentuals (4th Street Berkeley). There are other Shea
Butters on the market, but this one is quite thick and
really sticks to the skin. Also, medical supply companies
carry over-the-counter products specifically designed for
pressure sores, waterproof/sweat-proof and some can be
applied directly on a sore which is open. First though, I'd
get after the brace supplier and/or the doc who prescribed
the brace for help. The bruising tells me this is far more
than a surface issue and is harming tissue below the skin.
Best of luck!
Ann
Heartfelt thanks to each of you who took the time to share
your experiences with scoliosis. I no longer feel so
alone in figuring this all out. The information you
provided has been most helpful. We know that it takes a
village to raise a child. Thank you for being an
important part of my village.
Patti
Sept 2005
I am wondering if anyone out there can recommend a good
alternative health practitioner who works with adult scoliosis.
I've heard of people achieving dramatic results with various
treatments such as rolfing, chiropractic, yoga, etc. and would
love to talk to a few such people. I met one person who had a
lot of success with chiropractic (traction) and another who had
success with rolfing but would like to get more information
before making a decision.
geri
I have scoliosis and after living with recurring back pain for
most of my adult life, I went to see Dr. Timothy Shen
(http://www.spine-health.com/doctor/TimothyShen/) who referred
me to SOL Physical Therapy
(http://www.solpt.com/html/sportsmed.htm) where I have had a
great experience. I don't know how alternative it is, but my
PT used Active Release Technique on me
(http://www.solpt.com/html/artheal.htm) in combination with
exercises for strengthening and flexibility and my back feels
better than it has in years. I am stronger and have a lot more
symmetry in my body now. I had 14 sessions and now just do
the exercies on my own. I highly recommend SOL and my PT,
Laurie Barnum, or any practitioner who uses ART.
Kim
Sept 2003
I am looking for good referrals for the care of my spine. I
have Scoliosis, with quite a curve and pronounced hump. One leg
is shorter, one hip higher, etc. One shoulder is quite a bit
lower than the other, and my belly button is now off center as
the rotation continues. I am contemplating another pregnancy
but know that it will put increased pressure on my spine and
the curve will worsen. I am hoping to see an expert in this
arena, someone who can help me improve the posture I have, and
work with me to strenghten my back and stomach muscles so that
perhaps I can look and feel better. I do not want to go the
surgical route, and nor do i wan to resort to painkillers even
though I often have associated pain. Thanks,
anon
I have seen both Pilates and Feldenkrais approaches to movement
and body care be very helpful with scoliosis. They both help to
increase your interior sense of where your center line is, which
in turn gives you a sense of using both sides of your body
equally. This equalization is what you are after and what will
make inroads into the pain you have. Feldenkrais work can offer
the sensibilities and awarenesses necessary for change, and
Pilates can offer the exercises to maintain the changes.
L T R
I would highly recommend trying chiropractic. Depending on your
particulars (severity, age, etc.) a chiropractor would have a
good chance of slowing, stopping, or possibly even reversing the
curvature(s). Find one that works with posture and/or
biomechanics; in this area I'd recommend Dr. Doug Ross (he's near
the Berkeley/Oakland border) his practice is called Rockridge
Family Chiropractic 428-9288. Dr. Ross not only adjusts your
spine, but gives you exercises and stretches you can do at home
to support the care you're receiving at the office. I'm certain
that he would do a free telephone consultation if you have any
questions or concerns.
Lois W.
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