Re: Surgery or Alternative method of treatment

2007-09-30 15:53:35

My sister at 14 was told she would need surgery(harrington rod) to
keep her scoliosis from becoming severe, however, no surgery was
performed thanks to my mother. At the age of 19, she began to get
treated by a chiropractor and after 2 years of chiro care her spine
straigtened out. I too have found success from chiropractors for
treating my scoliosis. I have been under chiro care for some time and
know quite a bit about them. They are quite of few chiro methods and
the one technique that i find the safest and effective is the blair
technique
http://www.cychron.com/vnews/display.v/ART/2002/05/29/3cf535dd3bf46
http://www.blairchiropracticsoc.org/doctors_page.htm
Cranial sacral therapy must go hand in hand with chiro care. Most
osteopaths involve cranial therapy in their practice and you are
seeing it more amongst chiros.
http://www.upledger.force9.co.uk/CS_whatis.htm
some
Chiropractic care links
---http://www.kidchiropractic.com/scoliosis.htm
"A report of 100 chiropractic patients revealed improvement in 84% of
the patients and no worsening of the curve in the other 16%"
-http://www.icpa4kids.org/research_children_chiropractic_scoliosis.htm
"A nine-year-old male presented in our office with a chief complaint
of juvenile idiopathic scoliosis and intermittent back pain. The
patient had fractured his clavicle one month before his initial visit
and complained of intermittent "growing pains" in his right foot. The
case history also revealed that he had been involved in a motor
vehicle accident two years previously. The patient was managed with
upper cervical care, utilizing the Grostic Procedure of adjusting by
hand. Over the five months and ten days of care, the patient was
checked on 13 visits and required an upper cervical adjustment on
five of those visits. The leg length inequality, posture, and
palpatory findings balanced immediately after the first upper
cervical adjustment. Post-adjustment paraspinal surface EMG showed
that the paraspinal muscular activity was more balanced. Post-
treatment x-ray taken on the 13th visit revealed the thoracic curve
to be reduced to)x and the lumbar curve was measured at 3.0x, which
represents an 88% overall reduction in the scoliosis after the five
months of chiropractic care" qoute from this link w.icpa4kids
Be free to ask any questions

Surgery or Alternative method of treatment

2007-09-30 09:25:32

Hi
I am the mom of a 13 year old recently diagnosed with scoliosis.
Thoracic curve is 46 degrees and lumbar is 20 degrees. The
orthopedic surgeon with whom we met suggested endoscopic surgery
installing a titanium rod with pedicle screws to hold the rod in
place. I have done a ton of research and have found few success
stories where young people have been pain free years later. I see so
many posts in various forums where people who have had scoliosis
surgery are suffering from chronic pain and on pain meds for years to
come.
Needless to say, I do not want this for my daughter with her life
ahead of her. Does anyone on this list know of any alternative
methods which are known to work. We can live with the current curve
even as long as we can arrest further curving.
I have investigate sites detailing alternative methods but none have
track records of therapies which actually work.
Thanks for any help you can provide.
Shelly

Re: [life-with-scoliosis] Surgery or Alternative method of treatment

2007-09-30 06:22:21

Dear Shelly,
I had an operation for scoliosis when I was sixteen and I am now 30. I am
living in England. My spine was in an 's' shape the lower curve being the
largest at 54 degrees I can't remember the degrees for the top one it's so
long ago now. We were not given names for different types of scoliosis then.
My operation gave me great quality of life lowering my lower curve to 20
degrees a vast improvement. I am only now as I am getting older beginning to
experience any back pain after having no problem after the surgery for
years. I am however seeking further treatment for this and have never
regretted my operation. Although no-one can promise that your daughter will
be as lucky with regards to the pain, you have to consider the possibilities
of her condition worsening coupled with the risks of any operation and weigh
them up. Has her specialist given any idea as to the possibilities of
whether it may worsen or not? If not ask more questions, it is his job to
answer them to inform you and help you make your decision. I appreciate this
is a very difficult decision to make. There is one other thing I would say
for surgery. Myself I found it gave me confidence, adolescence is a very
dificult time and I wanted to look normal. Maybe it would help to sit down
with your daughter and find out what her needs are too. I really hope this
helps. The best of luck with your decision and for both of your futures. If
you would like to chat please feel free to email me.
regards Sharon.

Fwd: Some History

2007-09-29 21:22:14

Subject: העברה: Some History ETHY

Re: [Fwd: Announcement--New Dystonia Scales Available from WE MOVE]

2007-09-29 15:12:49

**********************************************
Just wandering, did the site's we sent help any?
Have a good-one when possible:)

Announcement--New Dystonia Scales Available from WE MOVE]

2007-09-29 13:38:50

Hi Karl
There was one I opened that wouldn't show anything up, so I'll have a try
looking for it in a search engine :-)
How are you doing?
Sarah H.

MEDLINEplus: Dystonia

2007-09-29 06:20:56

http://www.nlm.nih.gov/medlineplus/dystonia.html

Re: [life-with-scoliosis] [Fwd: Announcement--New Dystonia Scales Available from WE MOVE]

2007-09-28 22:45:26

What is dystonia?
Sarah.

$8,500 Of Scoliosis Research Treatment per candidate FREE.

2007-09-28 22:01:50

This research procedure requires you to take NO new medication. The
treatments are holistic physical techniques and practical therapy
developed by Warren Barigian founder of Vocal Bio Matrix
http://www.realvoice.com and click on FREE Research
This forthcoming research project is dedicated to those already
diagnosed with Scoliosis. Please click on the following link to view
details of our selection criteria and to obtain our online
application form. http://www.realvoice.com and click on FREE
Research.
"For those candidates selected this will be a life changing
experience". Starting date for processing of the first round of
applications will be 11-15-02. We intend to update our Web Site on a
regular basis to keep you informed on how our research is
progressing. Please bookmark our site for your future
reference and copy and paste this message to your friends in an
email.
Imagine how you would feel knowing that you made a life changing
difference to someone's life simply by letting him or her know about
this research program?

$8,500 of Scoliosis Research Treatment per candidate FREE

2007-09-28 06:10:18

This research procedure requires you to take NO new medication. The
treatments are holistic physical techniques and practical therapy
developed by Warren Barigian founder of Vocal Bio Matrix
http://www.realvoice.com and click on FREE Research
This forthcoming research project is dedicated to those already
diagnosed with Scoliosis. Please go to the following link to view
details of our selection criteria and to obtain our online
application form. http://www.realvoice.com and click on FREE
Research.
"For those candidates selected this will be a life changing
experience". Starting date for processing of the first round of
applications will be 11-15-02. We intend to update our Web Site on a
regular basis to keep you informed on how our research is
progressing. Please bookmark our site for your future reference and
copy and paste this message to your friends in an email.
Imagine how you would feel knowing that you made a life changing
difference to someone's life simply by letting him or her know about
this research program?

Re: hi all

2007-09-28 04:17:04

--- In life-with-scoliosis@y..., "bounddesire72" <bounddesire72@h...
I just joined this group, so that explains my belated response. I am
one of the less common male scoly's, 56 years old, "S" shaped
compensating curve, and am quite lucky in that I have little or no
pain nor discomfort. I self-diagnosed my condition at the age of 13
and asked my parents if they had noticed that I couldn't lay flat on
the floor. They sort of hemmed and hawwed and admitted that it
looked like I was aiming sideways while I walked, so I was sent to
the orthopedic surgeon who proclaimed me fit as a fiddle, albeit a
bent fiddle, and no surgery was recommended at the time. Were I a
teenager now, I am sure that I would benefit by the modern medical
techniques. Now that I am certified Jurassic, surgery really isn't
an option anymore. My curve does not seem to have gotten much worse
over the centuries and I hope to make it to the end without
collapsing upon myself. So far, so good!
Mike

from jessica

2007-09-27 21:16:00

hi my name is jessica,and ive had scoliosis since i was a child.i am in my late 40s now and had surgery a year ago.my spine was curved at 90 degrees,i never wore a brace as a child, i had very little pain,but it started to interfear with my breathing.i went through numerous tests, numerous doctors visits, to find out why i couldnt breathe right.it was my scoliosis.i knew i had this disease but it never really gave me any problems till last year when it started to interfear with my breathing.i was appointed to a surgen who told me that the surgery must be done,or things could get worse.he was able to pull my spine of my lung to give me some breathing room.i have rods and screws holding my spine and the bone graft.my breathing has improved but still there are times its hard to get a breath.my point is the pain im having,its like really bad pressure and tightness,ive been told that it will go away in time,theres still alot of healing to do.the surgen was great,he actually was
able to get my curve to a 40 degree.if theres anyone out there who has had breathing trouble with this, or has the rods and has been through this please give me your input.thank you for time. jessica

Re: [life-with-scoliosis] from jessica

2007-09-27 20:22:55

Hi Jessica
I started to have pain in my ribcage around a year ago last April, and
noticed then that my breathing started to be a slight struggle. Now it's
alot worse, tightness in my chest and a strange pain as I struggle to
breathe.
I went to my surgeon repeatedy with it since last year and he was hopeless,
it took me until February of this year just to get a lung function test, and
so my surgeon said, that came back clear. So I repeatedly went to my old GP
(family doctor) and he didn't help at all either, so I changed to one that's
tried to help a great deal more than my old one did. I was at my wits end
because none of the docs I was under would help and fobbed me off.
So I went to my new GP and they've helped alot more than my other did, my
new onw has sent me for a blood test for anything abnormal, and a chest
x-ray to see if anything showed up on my lungs, and trying me on some
easi-breathe inhalers to see if that helps. My surgeon has also retired in
September. So I'm waiting to see the new surgeon next week, and it sounds
morbid... but I just hope to God the new surgeon finds that it's my
scoliosis deteriorated or something, just so I know what the cause is of my
breathing.
Sarah.

Re: Thanks for the welcome

2007-09-27 12:12:42

--- In life-with-scoliosis@y..., "Sarah Housden" <scoliosis01@h...
alot of trouble walking. I have to use a cane, and just a year ago, I
didn't need one. It's interfered with my lungs being able to do their
job to the point that I am on 02 24/7. I'm still able to do a few
things that I enjoy with my flower's, as long as they are in pots.
Bending is out of the question.
Do you have scoliosis, or someone in your family? I'd like to hear
from you.
Anne

Re: [life-with-scoliosis] Thanks for the welcome

2007-09-27 01:35:14

Hi Anne
What are the degrees of the curves of your kyphoscoliosis?
Sarah.

Thanks for the welcome

2007-09-26 19:25:41

[INLINE] This is the first scoliosis group I've found on the net. I would like very much to say hello to all the members, and I will try to help anyone with this problem in any way I can. I had to retire in 2000 due to my kyphoscoliosis. I was born too early for the surgery, so I've had to handle it the best way I could. I have a good life though, and I am not here to complain. Thanks again for the nice welcome.

Anne

[INLINE] Anne

Re: Helping out a friend

2007-09-26 16:13:52

--- In life-with-scoliosis@y..., "Sarah Housden" <scoliosis01@h...
**************************************************************
She will more rhan likley need quite of help (witout make a fuss
about
doing it it must come from "within"
There will be so many things you could help with but most of them are
learned by doing.you seem to be doing fine just most of all just
remain her very good! freind.
I'll think about it maby I might have something that I'll remember.
Karl & Penny Coan
to
get
of
such
and
the

Re: [life-with-scoliosis] hi all

2007-09-26 13:17:45

Hiya

I'm 21, and I'm from the UK also. I had my 1st surgery in 1988 and 2nd one in 1995. What type of operation did you have to have done one your scoliosis?

From Sarah.

hi all

2007-09-26 05:20:38

I am a 30 year old female scoliosis sufferer living in the uk. I had
corrective surgery in 1989. I would particularily like to make new
friends to share experiences with. If you'd like to chat leave a
reply to my message or drop me an email to: bounddesire72@...
I am so glad for the internet chatting to others who understand
would be great
best wishes
bounddesire

Re: [life-with-scoliosis] Helping out a friend

2007-09-26 03:07:53

Hello Shaida;
My name is Karl I have a link that might help out.
* http://users.nac.net/mina/overcompensation.html

As far as I am concerned you are a very good friend, just trying to get info. on this just for me has been a tremendous task I would say be very careful with words they are very hurtful she will have many different things on her mind so be patient also and sometimes you will have to be very patient.
After you read the link I am inserting you will problem have more questions and many only you will ask after a bit of time things change all the time.
Hope your friend recovers fine with all that has taken place and what little I've read she will be fine.
Want to say something else criticism is always going to haunt her but when it comes from family or friends it takes on a different meaning and can hurt very much.

Wish you both the best of luck hope it all works out.
Karl

Helping out a friend

2007-09-25 15:49:30

Hi there... I was wondering if anyone would mind helping out. I have
a friend who has scoliosis. We've been good friends since we were
very young and i've always known that she has scoliosis. We're both
23 years old now. She went for corrective surgery yesterday. Anyway,
the reason I'm writing here is to find out if there is anything I
could do to make her feel better or more comfortable. I'm very
comfortable with supporting and caring for her in general. I'm
looking into more detailed things that I could do to make her feel
better emotionally. I hate seeing her in pain and wish I could make
it all go away. Is there anyone out there who went through surgery
and wished that someone did a particular thing during the recovery
time? Maybe it's something only a person who has gone through surgery
would know. Sometimes those caring for the friend won't think of such
a thing. Heck it might even be something the carer was doing and the
patient did not like. (Fussing too much over the patient?) I'd
welcome any ideas. Thanx a bunch!

Re: new member --please read

2007-09-25 11:01:38

I am not a teenager, but have gone through this and I need to tell
you a couple of things: WEAR YOUR BRACE!!! THEY WILL REMAIN YOUR
FRIENDS, YOU CAN'T COMPROMISE YOUR HEALTH FOR WHAT PEOPLE WILL
THINK!!! Emaill me if you want to talk, I am 31 now - wore a brace
for almost 3 years, had surgery when I was 12(wore a body cast for
6/mo), had surgery at 17 again wearing a brace for 4/mo) I UNDERSTAND
WHAT YOU ARE GOING THROUGH.
--- In life-with-scoliosis@y..., "brittbabe317" <brittbabe317@y...

Re: Herrington Rod

2007-09-25 03:35:21

Have you already had surgery, I had the surgery 19 years ago. If you
would like information about my experience feel free to email me at
darcynulph@...
--- In life-with-scoliosis@y..., "hrhfaeriequeen2000"

About spineuniverse.

2007-09-25 01:43:50

Just wanted to say spineuniverse has help me a lot understanding what's
going on with me has been very, very helpful I use it quite often myself
it so easy to use and I like watch so of the media they have if you can
handle it take a look.
Karl

Re: Back Pain - A Universal Language

2007-09-24 20:45:07

--- In life-with-scoliosis@y..., Karl & Penny Coan <coank5531@b...
Great article... I have never totally understood the difference in
Osteoporosis & Osteoarthritis (Spondylosis).. & since i have both,
plus the Scoliosis & Stenosis... it helped me understand...
I have not participated much lately.. we retired in April and have re-
located to Florida, hoping the weather will help the arthritis...
Would like to thank you, again, for informing us about Zanaflex...
was out of it for 1 week, while changing insurance plans & the pain
was so much worse without it....
Hugs, ida

Dug Industry Is Told to Stop Gifts to Doctors

2007-09-24 14:42:16

This was sent yesterday and though it doe's not dirrectley relate to
scoliosis it doe's for those of us that have to deal with living this
spine deffect and have too depend on med for the rest of our life's and
getting old.
Karl
Dug Industry Is Told to Stop Gifts to Doctors
WASHINGTON, Sept. 30 The government warned pharmaceutical
companies today
that they must not offer any financial incentives to doctors,
pharmacists or
other health care professionals to prescribe or recommend particular
drugs,
or to switch patients from one medicine to another.
The government informed the industry that many practices commonly used
in
the marketing and sale of prescription drugs could run afoul of federal
fraud and abuse laws.
Specifically, the government said that drug makers could not offer
incentive
payments or other "tangible benefits" to encourage or reward the
prescribing
or purchase of particular drugs by doctors, health plans or companies
that
manage drug benefits for employers and insurers.
The new standards, the first of their kind, were issued by Janet
Rehnquist,
inspector general of the Department of Health and Human Services, as
guidance to the pharmaceutical industry.
Aggressive marketing is the norm in the industry. For years, drug makers
have treated doctors to free Broadway plays, weekend trips, expensive
meals
and other lavish perks. Many companies have rewarded middlemen, or
pharmacy
benefit managers, for putting their products on lists of recommended
drugs,
known as formularies. Some companies have also rewarded doctors and
drugstores for switching patients from one medication to another.
Similarly, doctors in a position to influence the prescribing of drugs
for
large numbers of patients have been retained as advisers and consultants
to
drug manufacturers.
While the new standards do not have the force of law, drug makers that
flout
them are more likely to be investigated and prosecuted for violations of
federal fraud and kickback statutes.
"In today's environment of increased scrutiny of corporate conduct and
increasingly large expenditures for prescription drugs," Ms. Rehnquist
said,
"it is imperative for pharmaceutical manufacturers to establish and
maintain
effective compliance programs."
The public will have 60 days to comment on the standards. The government
may
revise them in the light of those comments.
The government said it was concerned about the industry's marketing
practices because they could improperly drive up costs for Medicare and
Medicaid, the federal health programs for 75 million people who are
elderly,
disabled or poor. The federal government spends $400 billion a year on
the
two programs combined, and the cost is expected to double in 10 years.
The new standards say "switching arrangements," under which drug
companies
offer financial incentives to shift patients from one drug to another,
"are
suspect under the anti-kickback statute."
Similar arrangements, under which companies pay drugstores or pharmacy
benefit managers to contact patients or doctors to encourage them to
change
from one drug to another, are also suspect, the government said. It
warned
companies that they would run afoul of the law if they rewarded
pharmacies
and pharmacy benefit managers for "moving market share" from one product
to
another.
The inspector general said that payments to consultants, advisers and
researchers "pose a substantial risk of fraud and abuse" if the payments
exceed "fair market value for the services rendered."
The new guidelines say that drug makers can violate the kickback statute
when they offer entertainment, recreation, travel, meals or similar
benefits; when they sponsor "educational conferences"; and when they
offer
research grants, gifts, gratuities and "other business courtesies" to
doctors, hospitals and other health care providers who influence the
prescribing of drugs.
The standards also apply to financial incentives given to purchasing
coalitions that buy drugs and medical devices for hospitals. The buying
groups are sometimes paid by manufacturers whose products they are
supposed
to evaluate objectively.
Ms. Rehnquist said that every drug company should appoint a compliance
officer, establish a hotline to receive complaints of fraud and abuse
and
consider paying rewards to employees who report misconduct.
Under the new standards, companies are responsible not only for their
own
employees, but also for sales agents and contractors who "engage in
improper
marketing and promotional activities" on their behalf.
In April, the Pharmaceutical Research and Manufacturers of America, a
trade
group for brand-name drug companies, adopted a voluntary marketing code
setting out what sales representatives may do in dealings with doctors
and
other health care professionals.
The code says, for example, that a drug maker cannot give golf balls
emblazoned with the company's name to doctors, because the products do
not
provide a benefit to patients.
The inspector general said that compliance with the industry code was
desirable, but "will not necessarily protect a manufacturer from
prosecution
or liability for illegal conduct."
Employers and health plans hire pharmacy benefit managers to review and
pay
claims for prescription drugs, to help control costs and to coordinate
care
for patients.
Barrett Toan, chairman of Express Scripts, a pharmacy benefit manager in
St.
Louis, said drug makers paid rebates to pharmacy benefit managers "to
make
their products more attractive to improve their position on the
formulary," increasing the likelihood that their drugs will be
prescribed,
in preference to products made by other companies.
John M. Rector, senior vice president of the National Community
Pharmacists
Association, said, "Pharmacy benefit managers increasingly take payments
from drug makers, with the result that patients are switched from a
product
that might be the best prescription drug for them to a more expensive
brand-name product."
The new standards say that drug companies may be subject to civil and
criminal penalties if they report inaccurate or incomplete data on the
prices or sales of their products. The government uses such information
to
compute reimbursement under Medicare and Medicaid, and the inspector
general
said the reported prices should reflect any discounts or rebates offered
to
buyers.
Ms. Rehnquist said that if drug makers found "credible evidence" of
violations of federal law or regulations, they should notify the
government
within 60 days, or sooner if beneficiaries could be harmed.
In recent years, the government has issued guidance to other segments of
the
health care industry on how to prevent fraud and abuse. Those guidelines
were addressed to doctors, hospitals, nursing homes, laboratories, home
care
agencies and suppliers of medical equipment.
by Robert Pear

Question Please..

2007-09-24 04:58:20

I was wandering has anyone had experience with not
having anything done about there condition due to family or other's
embarrassment?

Q's 4 new consultant

2007-09-24 01:31:40

I was just wondering who on the list has ever had their consultant retire and have a new one, or gone to a new one from their old one because of whatever reason...

Mine has just retired this month (September) so I'm trying to get an appointment for the new one for reassurance my spine is or isn't moving again and getting something done about it hopefully... is there any questions I should be asking him (the new one) seeing as he's taking over, as I'm clueless over this question asking thing as the consultant who's just retired is the only one I've ever been under since my scoliosis was diagnosed?

Thanks.

FindArticles - Spinal instrumentation

2007-09-23 16:43:53

Sarah -) Smurf (- [scoliosis01@...] thought you'd find this article
useful.
Spinal instrumentation
http://www.findarticles.com/g2601/0012/2601001282/p1/article.jhtml
I found explanations of some diff kinds of rods if anyone didn't know what all
were and what they did.

Wharton's stretch and strength books, anyone heard of them?

2007-09-23 14:21:37

DrWeil.com www.drweil.com
Do you have any recommendations to keep mild scoliosis from
worsening?
Answer::
Scoliosis is a puzzling condition because no one knows for sure what
causes it. The abnormal "S" curvature of the spine, usually noticed
during adolescence, can be due to a congenital spinal column
abnormality or to paralysis or weakness of the spinal muscles, but
most cases don't stem from any of these problems.
I'm attracted to the theory that scoliosis comes from unbalanced
breathing, which causes unbalanced expansion and contraction of the
chest and pulling on one side of the spine.
It sounds like you're dealing with a mild case, which is most common.
The usual treatment is physical therapy to improve posture and tone
spinal muscles. If that fails, the next step is a spinal brace worn
for at least a year to correct the curvature. Surgery is a last
resort for severe scoliosis that interferes with breathing.
I'd recommend active isolated stretching and strengthening exercises
described in two books, "The Whartons' Stretch Book" (Random House,
1996) and "The Whartons' Strength Book" (Random House, 1998) by Jim
and Phil Wharton. The Whartons are a father-and-son team who teach
this very effective method for correcting mild scoliosis. They claim
it has even helped older adults with long-standing scoliosis.
Scoliosis became an issue for the Whartons after Phil developed a
spinal curvature during college. A track star in high school Phil
typically ran about 35 miles a week. In college, he began running up
to 80 miles per week and developed severe back pain. He tried
massage, medications, everything, until his doctors told him that
more running could cause nerve damage and even paralysis, and
recommended surgery. Desperate for another solution, he found a
clinic that taught Active Isolated Stretching. An evaluation showed
that one of his feet arched less than the other, causing pressure on
one side of his body. This threw his body out of balance and caused
his spine to curve.
After a year of working intensively five hours a day every day,
Phil's spine was straight and his pain gone, and he returned to
running. If you have questions once you begin, you can reach the
Whartons' studio at (800) 240-9805.

New surgical treatments for scoliosis: vertebral body stapling and wedge osteotomies

2007-09-23 00:25:54

Has anyone seen this site or had a look at this new surgical treatment on the net I came across, I haven't read it properly yet. Has anyone on the list actually had this done?

Hope it works. Sarah -) Smurf (-

http://www.shrinershq.org/WhatsNewArch/Archives01/viewpoint8-01.html

Scoliosis in Children: A Complex Disorder

2007-09-23 00:14:10

http://www.spineuniverse.com/displayarticle.php/article1424.html

Back Pain - A Universal Language

2007-09-22 20:46:20

http://www.spineuniverse.com/displayarticle.php/article1457.html

Fixed Sagittal Imbalance

2007-09-22 12:18:13

http://www.spineuniverse.com/conditions/dp_022101bridwell_fix_sag_imbal.html

Hello all.

2007-09-22 10:35:53

Hey if i didn't make me self clear and you still have questions feel
free to post, and I like very much how you "all" are connecting sharing
your stories.
You would not believe, we who that we had nothing to offer, can simply
be an ear for some one venting really helps keep it up.. Before long
don't put it to you Drs. they frown at the netinfo. so much of it can be
misleading but you will wind up knowing as much if not more in some
case's but please do not the doting one's
Karl

Re: [life-with-scoliosis] Digest Number 337

2007-09-21 19:34:35

Thank you Karl! :) I'm finding all the information very useful!

~Bethann

Re: [life-with-scoliosis] Digest Number 338

2007-09-21 14:16:45

Hi Sarah! Nice to meet you :) I am very curious to hear about your curve progression and what you remember about how you felt before & after surgery. Any bracing or casting before or just after? What kind of surgery did you have? I'm quickly becoming educated about the nuts & bolts, but mainly I need some insight into how my son will feel.

Our goal through all this is to make sure he is treated as a person with feelings instead of as "the scoliosis" or just a case. Sometimes this is a major challenge when so many Drs are involved! Any insight you can give us from the child's/patient's perspective would be so very helpful!

~Bethann

Hi
I have congenital scoliosis, and I am now 21. I ended up having surgery for the scoliosis at age 6/7 with a curve of either 66 or 77 degrees and the surgery reduced it (I think) to a curve of something in its 20's.
Sarah :-)

Merriam-Webster OnLine

2007-09-21 11:31:49

http://www.m-w.com/dictionary.htm

MEDLINEplus: Directories

2007-09-21 09:10:56

http://www.nlm.nih.gov/medlineplus/directories.html

Re: [life-with-scoliosis] Herrington Rod/Rebecca

2007-09-20 23:03:34

Rebecca;
Here is a link that has been very helpful to me.
They have allot of doc. on scoliosis as well at the top of the page is a box or search engine to track down what you want, just need to spell it right and on the link page here is a list of link's to some other source's you might want to check out.
* http://www.nlm.nih.gov/medlineplus/scoliosis.html

Re: [life-with-scoliosis] Congenital Scoliosis

2007-09-20 12:19:00

Hello Bethann Martin;
Thanks for joining.
How are you today?

Here is a link on congenital scoliosis that will explain it.
* http://www.spineuniverse.com/displayarticle.php/article1502.html

There is also some links to other sites on our bookmarks page here is the link.

Re: [life-with-scoliosis] Herrington Rod

2007-09-20 11:26:58

Hello Beca;

How are you today?

Yes I have been reading allot about problems with harrington rods the best place to go to ask that question might be the ones at the scoliosis mailing list, there are many who will be glad to talk with you about it but you will need to subscribe to the list. There is a link to the site on the bookmarks page at life-with-scoliosis and somewhere in the middle of the page it tells you how to subscribe as well as other info. you might want.
Here is the link just click on it. As well there are other site's on here you may want to visit that are very informative.

Congenital Scoliosis

2007-09-20 07:19:16

Hello :)
Just joined & wanted to introduce myself. I'm Bethann Martin ... my
son (almost 5) has a 72 degree curve and that's about all I know for
sure at this point!! Clearly, we are gathering information like
sponges & trying to learn about all our treatment options. I'd love
to hear from anyone else impacted by congenital or infantile
scoliosis ... especially if you are enjoying positive progress!
Thanks!

Herrington Rod

2007-09-19 18:08:25

Hi, I am new to this board; thanks for starting it!
I am doing some on-line research and I have found that the use of
herrington rods have been discontinued due to mailfunctions or
failures. Does anyone know any more about this? I had a doctor's
apointment today to discuss pain that I am having, which is worsening
but as soon as I mentioned the internet, his eyes glazed over and I
couldn't get a darned thing out of him.
Any information y'all have would be great! I also have a ton more
questions as well.
Thanks,
Becca

Re: [life-with-scoliosis] idiopathic scoliosis

2007-09-19 11:54:15

Sarah;
How are you today?
click on link and there you will see more link's at spineuniverse.com that might help.
Idiopathic means cause of, is of unknown origin
and scoliosis you either know, if not, just type the word or words into their search box click enter and this will also give more info. on it....
Penny & I have put allot of bookmarks at the bookmark site at life-with-scoliosis just click on the bookmarks link and it brings up many site where you can get info to whatever plus there are more pages to links that will help you in your search if you need help or have a question just post.
Hope you have a good day!
Karl

Almost forgot here is the link.
* http://www.spineuniverse.com/displayarticle.php/article48.html

idiopathic scoliosis

2007-09-19 09:45:09

Hi,
I want to knew i u can recognize that you or you child
have idiopathic scoliosis ??
I understood that my scoliosis (curve) recognized that
he was idiopathic scoliosis.. but i dont knew why..
because when i was 6yo my mummy find i had defrence
between my shoulder...
thank you
and good-night (here is almost 2 AM...;-) )
Sarah

BioMed Central - Long-term experience with implanted intrathecal drug administration systems for failed back syndrome and chronic mechanical low back pain

2007-09-19 01:25:02

http://www.biomedcentral.com/1471-2474/3/17/abstract&ref=/dgc.nsf/us/

Sandrine.

2007-09-18 19:00:19

Sandrine how are you today?
Here is a program that will help you with the language trouble.

Karl & Penny

* life-with-scoliosis

P.S. If we can help you get started just post us..

Brianna

2007-09-18 16:19:45

Dear Donna;
Brianna and you are in our prayers right now.
God bless and kind regards,
David & Aurelia Edge
Attitudes are contagious
Let's make ours worth catching!

how the position of your teeth could be a culprit behind scoliosis

2007-09-18 07:32:09

http://www.upledger.com/news/8011.htm

Kid's Guide to the Back and Spine

2007-09-18 02:53:45

http://www.spineuniverse.com/kidsplanet/index.html

Re: [life-with-scoliosis] How RU

2007-09-18 02:47:21

me are fine
[INLINE]

How RU

2007-09-17 12:22:46

Hiya everyone.

How is everyone coping?

Sarah

(-UK-)

???????????????????????

2007-09-17 10:54:58

Hope everyone is feel 1/2 all right. :)
Need help getting around post us.

Soft Sleeves

2007-09-17 08:59:33

Someone mention they were looking for something to ware under their brace might check this out.

A Patient's Guide to Spina Bifida

2007-09-17 00:54:31

http://www.spineuniverse.com/displayarticle.php/article234.html

Surgeon left surgery to go to bank

2007-09-16 15:29:10

http://www.msnbc.com/news/791663.asp?cp1=1

Re: [life-with-scoliosis] Going on Disability from Work

2007-09-16 09:59:13

NB I don't have anything to offer as far as SSI but SSD is something else,
everyone gives you
strange looks and look if no say right out your looking for a hand out .
"PLEASE" Don't let these
people get you down if they only knew how tuff it is and if the knew what they
were talking about
they would shut up.
Now plan on being rejected at first the SSI my not be like this but just incase
be prepared for it.
Take all the documation you can with you thats what they look at no you.
Best of Lucy!
Let us know how it goe's OK?
Karl

Going on Disability from Work

2007-09-16 01:02:23

Hi! I started working less than a year after my A/P surgeries, and the
boss gave me telecommuting as an accommodation for my disability.
He left, and a new boss came in, and wouldn't let me work from home. I
tried to work onsite full time, but it was too much for me. I'm applying
for disability (after talking to the Employment Development Dept. of our
state), I notified the new boss, and she tried to fire me.
I'd like to hear from anyone who has tried to get state disability (SDI)
after working. You can email me off the list.
Thanks!
NB

Search for 'faq'

2007-09-15 20:52:29

http://www.sofamordanek.com/cgi-bin/htsearch?method=or&format=builtin-long&sort=\
score&config=htdig.msd&words=faq

Management of Idiopathic (Adolescent) Scoliosis

2007-09-15 16:27:03

http://www.spineuniverse.com/displayarticle.php/article296.html

Spinal Anatomy: Health Information - SofamorDanek.com

2007-09-15 11:48:00

http://www.sofamordanek.com/health-spinal.html

Devices

2007-09-15 03:10:20

http://www.spineuniverse.com/displayarticle.php/article32.html

Technology Breakthroughs in Spine Treatment

2007-09-15 03:00:10

http://www.spineuniverse.com/displayarticle.php/article23.html

The Aging Spine: Older Doesn't Have to Mean More Painful

2007-09-14 21:11:56

http://www.spineuniverse.com/displayarticle.php/article1398.html

Interesting Bone Morphogenetic Protein (BMP)

2007-09-14 06:53:14

http://www.spineuniverse.com/displayarticle.php/article1544.html

Degenerative Disc Disease and Low Back Pain

2007-09-14 05:52:41

http://www.spineuniverse.com/displayarticle.php/article242.html

Help with some pain

2007-09-13 22:53:01

I have started using this supper blue stuff, eventho I still take meds
it really does help the pain left over that the meds don't touch.
You all might want to give it a try.
If you would like to know more about it just type blue stuff into a

Fwd: [Support Israel List] Info on Hebrew U attack

2007-09-13 17:31:47

Note: forwarded message attached.

Re: [life-with-scoliosis] underwear

2007-09-13 17:00:10

I think once they make a good fitting braqce for you
the experience will not be as bad. I know when i was
younger and had to wear a brace, i just wore a cotton
vest under it, i lived in a hot country then , i was a
bit uncomfortrable but i think anyway you take it, a
brace is always uncomfortable
hope i sort of helped .
Take care

Re: [life-with-scoliosis] Hi im new

2007-09-13 05:05:19

Hi Gab
Have you told your doctors about the pain, and if so what are they doing if
anything to help? I live in the UK and I have pain from my scoliosis and my
GP gives me drugs for it that don't seem to work ALL the time but it clears
some of it up.

madhatter060

2007-09-13 02:53:28

Is he taking any meds, if not let the Drs. know but more that likely it could be the food it will do it top me plus you weird dreams when one eats late.
I understand what a pain it is eliminate the late night eating and see what happens ,sorry so much of this scoliosis thing is so individual it's just a guessing game wish it wasn't.
Anyone else have any comments on eating at night and it making them sick?

Karl & Penny

madhatter060

2007-09-12 11:43:31

there is one thing: our kid is just breaking into wearing his brace and has been throwing up at night. we think maybe he's eating too much/too late at night before putting it on for the first time that day; must be the pressure, i guess.

any thoughts ?

madhatter060

2007-09-12 11:30:43

yes, thanks, got it, studying it now.

quite an effort, get back to you if questions

thanks

madhatter060

2007-09-12 08:12:23

Very Good get back with me if we can help,glad your set up just.
Karl & Penny

Re: madhatter060

2007-09-11 20:40:54

Just wondering if you got post and if the scoliosis mailing list was
what you were looking for.
If you had any trouble with getting around let us know OK?
Have a good one!
Karl & Penny Coan

Hi im new

2007-09-11 17:37:00

Hi My name is Gab im 14
I have had scoliosis (diagnosed) for about a full year now. I am due
for anothe check up in aug. I am feeling so much pain. I cant see my
physical therapist no more because my mom was busy and no one was
able to take me to the visits so they cancelled them. I no longer
have the exceriss papers because we moved and all my papers got
thrown away. I know some good things for pain but nothing really
helps. The docters said that if my back moves around 5 more degrees I
need surgery. I am so scared and freaked out because my pain has
increased sense my last check up. I am feeling so much axiety and my
mom is getting pissed off with my attitude because I am feeling this
pain and I have no place to vent. I have a job at a cookie shope
called Hungry Bear Cookies. I live in california. My lil sisters dad
own the store so I was gaurenteed a job but I get money for clothes
and junk now because my mom doesnt want to pay for my junk anymore. I
know Im saying a lot on here but I really want to say A LOT more but
Its not like anyone will actually say anything about this. Can some
people tell me how they cope with everything. bye.
My AIM Screen Name is madhatter060

SpineUniverse Patient News Regis W Haid Jr. M.D. Guest Editor]

2007-09-11 14:50:48

Morning all hope your having a good one...;( If not try turning it
around think only positive thing and humor helps me~TRY IT...
This is one of the things I subscribe to so will pass it along to you
all as I/we get them...
Karl

Re: [life-with-scoliosis] new member --please read

2007-09-11 07:24:56

Dear Brittany,
WELCOME TO LIFE WITH SCOLIOSIS .
We would like to suggest that you subscribe to the link we are adding below as they have a group just for teens that may have just the information you are seeking.
Also, if you will go to our bookmark page you will find a link for spineuniverse.com and kidshealth.org.

* http://www.ai.mit.edu/extra/scoliosis//scoliosis.html

underwear

2007-09-10 20:43:10

has anyone any tips on what and where to get clothing to wear under
back braces? thanks for your help

Re: underwear

2007-09-10 19:30:37

Hello cway I believe I come across sevrral sites pertaning to that
here is one to start with http://www.docortho.com/.
I also think spineuniverse.com has a site for clothing also. We have
put a linl to it on the bookmarks site here

SpineUniverse Patient News July 14]

2007-09-10 16:04:28

what i meant too do was send it to you all anyway.

Here is a paper on the genetic ink in "ALS"

2007-09-10 04:22:46

This mi doc 1 sending them is 6 postings so it won't take so long to
download..
If you need the Adobe free reader their is a link on the bookmarks site
at "LWS" for short.
Remember ask any questions you like knowledge is power and to gain it
asking questions can be very enlightening and sometimes fun.
Karl

my "kinky" fiancee...

2007-09-10 03:44:16

Hi. My fiancee, age 49, has scoliosis. Can anyone give me tips about
what I need to keep in mind to be a good partner for her?

Acute and Chronic Pain

2007-09-09 20:29:46

http://www.spineuniverse.com/displayarticle.php/article108.html

SPINE-HEALTH | Research

2007-09-09 13:31:35

http://www.spine-health.com/research/res01.html

Understanding adult scoliosis (degenerative scoliosis)

2007-09-09 11:15:17

http://www.spine-health.com/topics/cd/scol/scol03.html

Understanding idiopathic scoliosis information and treatment options

2007-09-08 21:14:31

http://www.spine-health.com/topics/cd/scol/scol02.html

Understanding scoliosis

2007-09-08 14:43:13

http://www.spine-health.com/topics/cd/scol/scol01.html

Scoliosis World : Alternative Treatment

2007-09-08 10:05:15

http://www.scoliosis-world.com/cat14.htm

Link's

2007-09-08 06:33:38

These are a couple of sites that are full of info.
hope they are of some help.

Have a good one!
Karl

http://www.spineuniverse.com/

http://www.scoliosis-world.com/

How do you feel about all the negetive crap one with scoli.

2007-09-08 01:05:51

If you all wish lets here how everyone feels about all the negetive I
consider much of it worse than that but anyway what are your viev
points on that subject?
Karl

Re: New Member

2007-09-07 18:31:19

Hello,Kathryn welcome to our group.
Feel free to talk freely about anything at all and we have put link's
to sites full of info., images of surgery lot's os stuff
You will find the link's here

Re: [life-with-scoliosis] new member

2007-09-07 16:19:19

i can realte karen, my story is similar except i am 33, have lost by now several jobs as a result of it. i sought government help, but they dont want to do the surgery, they have decided to retrain me...great so i can loos another job from being out so many days...they say i should just tolerate it long enough to get insuuance adn let the insurance cover it...i cant even tolerate it long enough to get laid...sorry had to lighten it up b4 i exploded...anyway...its quite a hard walk...and the good news is...im still waiting to answer that one.

Questions and Answers about Scoliosis in Children and Adolescents

2007-09-07 05:18:10

Some of the info. ya'll are looking for may be found here, I think the dig cure is around 20 degrees.

Karl

Re: [life-with-scoliosis] Double Braces

2007-09-07 04:40:12

i have no idea lol. i have never had a teeth brace.

Re: [life-with-scoliosis] thank you Sarah

2007-09-06 15:00:11

Hay Suean
Sorry I mean kyphosis (-;
I find link about this
http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=247&topcategory=Spine
and about the operation, i didn't had operation.
my degree is not so bad, and in 1980 the didn't make a
lot of operation like to-day (-;
my degree was 20-30 degrees in scoliosis
and more of 40 in the lordosis
my DR said that i can do this operation, only for
esthetics, and i decide not to do this operation (I'm
not look so bad ;-) )
Sarah

thank you Sarah

2007-09-06 14:33:51

Hello Sarah,

I'm considering putting my daughter in some type of sports/excerise plan...

I hope this would help her too...

What is kiposis? I'm not familar with this...

I have so many questions...Why do they wait until the scoliosis reaches 65 degrees to do the back operation?

When you mess with the spine to do this type of operation does it cause the person not to grow anymore?

Thank you for replying,

Sueann

Re: [life-with-scoliosis] new to list

2007-09-06 04:50:30

Hello Sueann,
My name Sarah I 34+ yo
I also had/s scoliosis, that include kiposis,
lordosis(Big) & scoliosis, since i was 6 year old. I
used "Boston brace" between 14-16 and i was wear
brace who made from plaster (gypsum).
I'm also do a LOT of exercises, physiotherapy,
swimming etc..
my parents sent me to classes like, ballet (only the
beginning..), Gymnastics. and this HELP me !!
it's make me to be flexible.
(I'm not English native speaker so maybe i have
grammar
mistakes..)
Sarah

new to list

2007-09-05 22:00:07

Hello,

I'm new here...I just signed up tonight...

I have a 8 year old daughter that has scoliosis. I'm in search for someone to talk to about this and to gain knowledge about scoliosis.

I am so confused about scoliosis and I think I have her seeing a quacky doctor.

Her spine curvage is sitting at- top 30 degrees and bottom 26 degrees...

The last visit we went to she was at- top 28 degrees and bottom was 32 degrees. I don't know if this is good or bad...He never answered me or said anything...To me this is no different from the last visit. The numbers are basically jumping back and forth. I do not like this doctor for many reasons. I know I need to change doctors and I'm the only one with the power to do so...

I'm 28 years old and have recently been told I have scoliosis. I woke one morning with back pain and I couldn't turn left or right without screaming with pain. I went to the chiro and he told me that I have scoliosis that has been untreated. I never knew I had scoliosis. I don't know the degree of the curvage as he doesn't specialize in this type of spine disorder. So, I told my daughters doctor that I had been told I had scoliosis also just in case it may be a concern...I told him about the pain I have been in and that I'm really concerned about my daughter suffering as I have been. He said to me that when you get older you suffer from back pain that isn't scoliosis related...I didn't understand this...I know that I have read that scoliosis can cause major back pain...Even leg, hip and so forth pain as well...

I'm rambling here...I'm so upset and not sure where to turn..What to do...I'm so worried about my daughter because her body is starting to look deformed...He right shoulder muscles are shrinking and causing her shoulder to pull towards her chin. She has a terrible growth on her right of her back from the Scoliosis...I'm so worried...

I'll post again soon once I'm more stable and not so upset...

Thank you for reading this!

Sueann

new here

2007-09-05 21:06:17

Hello,
I'm new here...I just signed up tonight...
I have a 8 year old daughter that has scoliosis. I'm in search for someone to talk to about this and to gain knowledge about scoliosis.

I am so confused about scoliosis and I think I have her seeing a quacky doctor.

Her spine curvage is sitting at- top 30 degrees and bottom 26 degrees...
The last visit we went to she was at- top 28 degrees and bottom was 32 degrees. I don't know if this is good or bad...He never answered me or said anything...To me this is no different from the last visit. The numbers are basically jumping back and forth. I do not like this doctor for many reasons. I know I need to change doctors and I'm the only one with the power to do so...
I'm 28 years old and have recently been told I have scoliosis. I woke one morning with back pain and I couldn't turn left or right without screaming with pain. I went to the chiro and he told me that I have scoliosis that has been untreated. I never knew I had scoliosis. I don't know the degree of the curvage as he doesn't specialize in this type of spine disorder. So, I told my daughters doctor that I had been told I had scoliosis also just in case it may be a concern...I told him about the pain I have been in and that I'm really concerned about my daughter suffering as I have been. He said to me that when you get older you suffer from back pain that isn't scoliosis related...I didn't understand this...I know that I have read that scoliosis can cause major back pain...Even leg, hip and so forth pain as well...
I'm rambling here...I'm so upset and not sure where to turn..What to do...I'm so worried about my daughter because her body is starting to look deformed...He right shoulder muscles are shrinking and causing her shoulder to pull towards her chin. She has a terrible growth on her right of her back from the Scoliosis...I'm so worried...
I'll post again soon once I'm more stable and not so upset...

Thank you for reading this!
Sueann

Double Braces

2007-09-05 11:34:33

Omg...how unlucky am i...i'm getting teeth braces and i alreadi have
a boston back brace....atleast 1 of them wil distract me from the
other...or can you be in pain in both places and think about both at
once?

Re: pain!

2007-09-05 10:54:27

Uh oh! When you go to an Othorpedic Surgeon make sure you tell them
that you only wore the brace for a couple months after surgery. I
also had a rod placed along my spine and was required to wear my
brace for a year after surgery when I was 13 yrs old. I'm 32 yrs old
now. They said for the first 4 or 5 months that I wore it that I was
NOT to sit up without it on. I had to lay completely flat while
having it off for the hour that I got to have it off for the day.
Then I got to sleep with it off but I still had to wait for my dad to
come put it back on to get up for school.
I'm assuming they required this because they needed to give my back
and fused areas around the rod time to heal and become strong. I'd
suggest going to the doctor now if the pain is that bad.
Does it hurt to twist your shoulders to the left or right? Or stretch
your back?
Christine
--- In life-with-scoliosis@y..., "iloveorcas2001@y..."

only one. Just because I'm having problems does not in any way mean
that you will. I was not very responsible when it came to doing what
the doctor told me to do. I was supposed to wear a brace for a year
after the surgery, well........I only wore it for a couple of months,
I know.shame on me! I don't know if that has anything to do with the
problems I'm having now. I know i should have worn it now! What kind
of surgery are you having? I'm curious because i was wondering if
they still use harrington rods in scoliosis patients.....I heard
there are different techniques nowdays, It's been so long since my
surgery and after i got it I just thought ok it's over and now I'll
just go on and live my life with these things in my back.......I
never bothered to go see a dr. in the years after because I was never
told i had to. whatever kind of surgery your having i wish you good
luck with it and make sure you ask alot of questions beforehand and
again I'm so sorry if i scared you........Amy
that have had me a bit freaked about having the surgery...can you
tell me a little more about problems in adult scoliosis patients? or
at least where i may read up on it as well...please. i had a teacher
in high school that had the same operation...and he died a few months
later as a result of some problem with the surgery...or at least that
was the scuttle butt. seeing as im 33 and just now addressing the
problem. im wondering how many complications i can expect...thanks
for the new load amy...lol...just kidding...c-ya...Kelly

bmj.com The Pro's and Glucosamine from th BJM

2007-09-05 05:10:20

If the page doe's not load completely just click on the link...
Karl

Pain

2007-09-04 20:15:23

thanks karl...i am trying...and i totally understand about the government run around...im going through it right now...sat in the doctors office for three hours today...have to go to vocational rehab tomorrow for god knows how long...but i try to keep a stiff upper lip, if you will...guess im just venting as well...i will do what they tell me to when they tell to...because im sick of hurting all the time...thanks guys...Kelly

Courier-Journal.com: Features

2007-09-04 10:13:03

http://www.courier-journal.com/features/columns/bodyshop/fe20020526body.html

Re: Pain

2007-09-04 07:29:40

Kelly this is Karl I just wanted your going too here a lot of stories you would rather not but do not let them scare you and I know it is hard not to, but with todays improvements's in Medicine and technology stuff it's no as bad as it seems. Most of what you here are hearing from people like myself who had bad outcomes that's just us we're just venting. After you have been associated with the medical system with in many cases which just let's us down operation that did not work like touted and the governmental system that gives one the run a round and make's one jump through all kind's of loop hole's tell you there is nothing wrong that it is all in you head that stuff get very old fast as if dealing with this scoliosis stuff is not enough. Plus some of us are getting on in age and that's not a help either. Sorry to ramble on. you need to keep a positive attitude it it what keep's most of us going.

Smile!
Karl

Re: [life-with-scoliosis] pain!

2007-09-04 04:47:21

just great...these are the kind of stories that have had me a bit freaked about having the surgery...can you tell me a little more about problems in adult scoliosis patients? or at least where i may read up on it as well...please. i had a teacher in high school that had the same operation...and he died a few months later as a result of some problem with the surgery...or at least that was the scuttle butt. seeing as im 33 and just now addressing the problem. im wondering how many complications i can expect...thanks for the new load amy...lol...just kidding...c-ya...Kelly

pain!

2007-09-03 22:08:27

Hi I haven't posted here in so long but after reading up on problems
with adult scoliosis patients i am so concerned! i had my surgery 17
years ago when i was 21, i had fusion with harrington rods, I haven't
had a check-up in 15 years and now I'm waking up to the fact that i
may have something seriously wrong going on with my spine. I have so
much pain in my left hip and upper back it takes me a little while in
the morning to get up because my back is so stiff. I just thought the
pain was normal and i tell myself to just deal with it, well after
reading up on problems in adult scoliosis patients i think i better
get myself into see an orthopedic surgeon. I never was told i could
have problems in the future when i had my surgery. My dr. told me i
would be fine and that i could go jump out of a plane if i wanted to
thats the last thing he said to me after i recovered from my
surgery...hahaha right doc.!!! I can't even jump off a log without
feeling alot of pain, it really makes me angry that no one told me
about the risks of this surgery in my later years. I'm now 38 and
feel like I'm 80 physically! anyway, i will post again after i see
the doctor...sorry about the complaining but i figure this is what
the group is for...bye for now........AMY

Back Braces

2007-09-03 10:36:45

Hi...i'm 13 and new to this group. I was wondering if anyone here has
a backbrace like me(as have a boston brace). I would really enjoy
talking to some one who i could relate to and was around my age.
Email me or reply please.

Re: Pictures of my brace!

2007-09-03 07:08:19

That was the last brace I ever wore which was when I was 15-16yrs
old. So that means it was about almost 17 yrs ago. My first brace
when I was a year old was made from leather straps. I didn't start
wearing the milwaukee brace till I was about 4 years old.
Ocassionally, I would go in to be refitted for new ones. How young
did you start wearing a brace. My lumbar area is now compensating for
the Cervical and thorasic vertabrae curvature. My scoliosis is pretty
severe. =o)
christine
--- In life-with-scoliosis@y..., Anonymous <anonymous48187@y...

Re: [life-with-scoliosis] Digest Number 286

2007-09-03 01:25:18

do you have a list of web sites dealing with scoliosis? I could really use a list emailed to me asap. We are starting a support group and would like to get as much information out to people as we can. Could you please send what you can--a simple list of email addresses would be fine. Also if you know where we can get phamphlets, brouchures or other educational materials. Thank you.

Re: [life-with-scoliosis] Hi Angie

2007-09-02 21:43:03

Hi.
I think it can be very much the same over here in the UK, some doctors that
cross your path are pure evil, yet you can get others that couldn't try to
help you enough.
My mother funny enough is now under the same surgeon as me because she has
osteoperosis or something in her back, and my surgeon's the orthopeadic at
my nearest hospital. I hate taking her with me because she gets cocky with
him (which can get kinda funny as it takes him a while to think of a come
back line), and my surgeon ignores me as though I AM just that slab of meat
he cut up a while ago which really ticks me off.
He had his good point though, he gave me a copy of my x-rays that I didn't
have to pay for.
My mom has threatened to take me to the ER a couple of times though because
my breathing became affected over christmas to that I wasn't sleeping
because I couldn't breathe and I couldn't breathe because I was over tired.
My surgeon was told but hasn't seemed to point us in any direction to help
to get it sorted other than send me a letter say he hasn't made any plans to
make an appointment unless I call his secretary to see him. My mom hit the
roof and says she's gonna rub it in all the way when she goes over hers :-)
My surgeon does not know what he's messing with when it comes to my mom
either haha. She's an absolute nightmare when she gets going, she's loud
and very outspoken if someone like a dctor doesn't get things sorted and
upsets her. I'm sure she scares people who meet her ha! ha!!
I went to my family doctor a couple of times last year. The last time I
went about it he admitted that he didn't know anything about it and told me
my chest is being pulled down, and is crushing my lungs and told me to blow
in a balloon. Which I thought was nutz so that's why I have changed to a
different one.
My surgeon ordered a lung function test at the beginning of the year and was
only in there 20 mins at the most and blew on 2 things, when it was meant to
have been a 2 hour test. and my surgeon said that came back as fine with
nothing underlying cause with the lungs themself. Then said he hasn't made
another appointment for the time being.
I don't know why they make me breathe better. It feels as though they don't
even wanna try and don't want to know. That's why I hate the doctors I
have. My dad says just tell them... I do tell them, and they still don't do
anything. So I get sarcastic now :-)
My surgeon did refer me to physio therapy for the pain, but that made me
laugh more than ever with the things he told me and the excercises he told
me to do, and the physio read me like a book that I wasn't likely to listen
to all of what he ordered me to do like wear flat shoes for the rest of my
life. So he doesn't make me go as long as I agreed to do them, which I
don't because they don't work :-)
You're in California, cool. I always wanted to go somewhere like that to
see what it's like.
What do you want to come to the UK for. The weather is better where you are
:-)
I didnt think I'd ever fly but I went Spain in 2000.
Sarah.

Re: [life-with-scoliosis] new to group

2007-09-02 08:08:11

Hi Kelly.
I aren't sure on how your insurance works over there with getting hospital
treatment and stuff, but could you have gotten free treatment when you were
younger as a child, or did have to still be insured with someone even though
you were a child and weren't working and were still at school?
I'm in the UK so I don't have the foggiest how it works over there lol.
Sarah.

RE: [life-with-scoliosis] Pictures of my brace!

2007-09-02 05:52:35

very nice brace, and you?

Pictures of my brace!

2007-09-02 00:21:27

Hi,

These aren't the greatest pictures but you can at least see what it looks like. I had a shoulder harness for my right shoulder to help it lay flatter. The worst part about this thing was the chin rest. For a long time I had a permanent bruise or mark under my chin on my throat. This is the one I wore when I was 15 yrs old. Scarey to think that I was soooo tiny.

Christine

Re: [life-with-scoliosis] Hi I am new 2!

2007-09-01 14:58:35

Melissa,
Welcome, first thing she needs is a to have a B/M this will help her greatly.
There are many ways of doing this sometye of mild laxative should work although
you may need
something stronger at first,
paregoric not sure that is spell right, metamuclial work's well with my mom.
Also deep breathing so as not to where she passes out is also helpful with pain.
Then get her to a doctor and get her evaluated.
Yes there are good books if you will look on the main site of
life-with-scoliosis
you will see two links one to this group where we have put some very informative
bookmark's/links
and second is a link to the scoliosis mailing list you will
need to subscribe make this your main source of info. I say this because they
seem in some way to be
associated with the "SRS" short for scoliosis research society most of your
info. and update's come
from here and Linda Racine who moderates that group is very good if you have
question's see would be
the first one to ask. Plus they have link's too book's there
The bookmark's here are all informative subscribe to the other list and use the
other's as a source
of info. I suggest after you do the other stuff you get another mailing address
so as not to clutter
up your mail box and it is also a means of some privacy it will help stop a lot

Hi I am new 2!

2007-09-01 11:47:06

Hello Everyone,
I am completely new to scoliosis and it's world of problems. I don't
have scoliosis but my mother does, she said they found it when she
was in junior high and the doctors wanted to do surgery about when
she had me. She didn't let them do it,and now at 43 her back looks
like and "S" not the sideways, but foward and back,,she has seen the
dr (all of this started with a recent "back ache") She's waiting for
approval for the ultrasound,,she has a hard time going poop if at all
right now, I guess thank God for milk of magnesia. Her hip is out,
and she feels weak.
I am very concerned for my mom, I don't know much about this stuff or
even what type she has,, so if anyone here can help with info that
would be so wonderful,,I don't plan on leaving this group any time
soon, I don't see it as a "horrible vacation" but rather something
we'll be dealing with for awhile.
My mom has somewhat good support, her and my dad are still together.
I only live two hours away; but like her, I work nights and sleep
during the day.
Thanks for your time and I look foward to anything that anyone has to
say.
BTW are there any good informative books out there?
Thanks again,
Melissa

Hi Sarah

2007-09-01 11:03:08

hey again sarah!
sounds like we are both in the same boat as far as doctors are
concerned:-)
your dad sounds exactly like mine haha!! my dad (and mother) are
constantly ticked at Kaiser for what they put us all through. i've
never had to fight anyone harder then my HMO. it just gets to be to
unbelievable sometimes!
although if you don't like this doc i hope you find someone you do.
once i had to run to the ER because of a bad flare-up of my rosacea.
the pain was so horrible i was going to kill myself. the ER doctor i
got was so horrible, rude and just plain awful i started crying in
his office. i lost it and couldn't take it anymore. my mother just
happened to have driven me there and well, don't mess with the mom:-)
she put him in his place for me and i ended up getting the vicodin. i
have had some seriously bad doctors before. its really sad....
how come they can't do anything to make you breathe better at least?
do they keep checking your breathing and at least keep up on it? but
i'm not sure how they do that.
Its really good to talk to you!!!!
I live in the San Francisco area in California:-)
i've always wanted to visit the UK though, but besides the $ i have a
fear of flying like no other:-) oh well...
Angie
--- In life-with-scoliosis@y..., "Sarah Small" <scoliosis01@h...