I received an email from a man in Florida last week. He read my article online (Amazing Brace - there's a link on this blog), and was desperate for help for his 16 year old son. Apparently, an orthopaedic surgeon told them the teenager has a 52 degree scoliosis and "must have spinal fusion in the next two or three months". The boy, a budding football star, was devastated that his football dreams were dashed, and his parents, like any, were terrified of the surgery. Of course, if someone needs the surgery then thank god it's available, but who wants to go into such a dangerous surgery if they don't need it. The dad asked me about the SpineCor brace, and I told him that I've had many responses from people who have had great success with it. Since his son has no symptoms, I was surprised at the rush to surgery. The father found a chiropractor in Miami who fits the brace, and wanted my opinion. I told him that he should definitely give the brace a try, after calling the chiro in Florida, who seems very knowledgeable and committed ti the brace - he's been fitting the brace for years now, and says he has about an 80% success rate. I was most impressed when he told me that t takes him about four hours to do a fitting, since the key to the brace's success is all in the fit.
Well, the boy was fitted with the brace yesterday - and guess what his dad told me - that the curve they got on yesterday's xray was only 39 degrees! That's a big difference from 52 degrees. Why the difference? Perhaps because the xray the surgeon had taken was apparently done with two machines, since they didn't have one long enough. The chiro, on the other hand, had a proper xray machine and feels his reading is the accurate one. The young man is now in the brace, and apparently has some growth left - I think he has a really good chance of avoiding surgery. But why was the surgeon rushing to surgery? Hummm. Makes you wonder. I don't even want to speculate. If you or your child is told you need spinal fusion, then it definitely pays to look further, as this story shows. If you decide to opt for surgery, make sure you have exhausted conservative options first. That's why this blog is here - for information - I have no financial gain from this - I just can't stand the thought that some people , especially children, are being sent into difficult spinal surgery needlessly.
Saturday, March 7, 2009
Sunday, March 1, 2009
My Personal Goal
Since I have a child with scolioisis whose pain issues have been solved by a conservative brace (SpineCor), I want to make sure I reach as many patients (child and adult) as possible to let them know that there is help out there. The medical profession doesn't recognize the brace, or other conservative treatment, which is ridiculous because it works! I have no financial gain, I am a journalist who hates the thought that children (and adults) are being sent into dangerous spinal fusion because a doctor is refusing to admit the truth - that a conservative method of treatment is actually working.
Since scoliosis has a genetic link, and tends to run in families, I want to ensure that my great, great grandchildren will be able to look up this site, and find out that there was a brace that worked on their great granfdather, in case, god forbid, doctors are still unwilling to admit that anything short of spinal fusion works.
Some have suggested that surgeons just want to make money on the surgery (upwards to $100,000.00 per), but I don't want to believe that, I think that doctors are just being stubborn, and forgetting the importance of 'continuing education'. God help the surgeon that does life altering surgery on a human being who could have avoided surgery. Let this site be the watchdog!! Surgeons beware.
Help for scoliosis sufferers
I've decided to set up this blog for people who are getting conflicting advice concerning treatment for themselves or their children's scoliosis. Having gone through this with my son, and finally finding a resolution for him (read Amazing Brace, link below), I am appalled that the medical profession still insists that the best 'treatment' for scoliosis is to 'wait and watch' until the curve is big snough for spinal fusion, one of the most dangerous and painful surgeries performned today. When will doctors get the message? Not until parents and patients insist on change. Hopefully this blog will help do that. This blog is for anyone who would like to share their story, receive help and support, or seek advise. We have to change medical treatment for scoliosis at the med school level, because that's what is going to have to happen to get doctors to open their eyes. My goal is to save children and adults from spinal fusion by using the best conservative treatmentss available, and yes conservative treatment works, I know that firsthand. I receive letters daily from people who have been helped by conservative treatments. I add my own son's success to that list.
Cheers - there is hope!
Sharon
sharondunn.com
Cheers - there is hope!
Sharon
sharondunn.com
SCOLIOSIS - AMAZING BRACE. I've had overwhelming response to my story 'Amazing Brace', that appeared in Macleans earlier this year. I'm thrilled that I've received so many letters from scoliosis sufferers who say that the brace has given them their lives back. Amazing Brace, is now online at macleans.ca
LETTERS RECEIVED
Received: Friday, January 23, 2009, 4:08 PM
I just read your Amazing Brace story (one year later) and wanted you to know that I have a similar story with my son. He was actually put in a hard Boston Brace and told that it would simply put surgery off until he stopped growing. He had just turned 12 at the time. The experience wearing the brace was horrible. My husband and I cried together wondering how we could ask him to wear it until he stopped growing (at 17 or 18). My son’s personality shut down. He became quiet. He could not eat with pleasure. He could not play the sax with ease. I also found the SpineCor brace on the internet. I spoke with one of the chiropractors on the phone for 45 minutes. We have to drive 6 ½ hours to Atlanta to be treated with the brace but it is
worth it. My son wears it all the time except when he showers or swims. It has reduced his curve and he will not need surgery. I discussed the brace with our Orthopedic surgeon and he was adamant that it does not work. He saw the x-rays (that he took) of before and after the SpineCor brace and he still will not agree. It is like talking to an insane person. He told me that he and his colleagues would never use it b/c there is not enough research. He said that he would not do research on it b/c he does not believe in it. I decided to continue seeing our surgeon hoping that at some point he will soften and open his mind. I have been amazed at how the traditional doctors are completely closed to even the possibility that there might be a new way to treat scoliosis.
I appreciate your story and hope that you will continue to
educate the public on this brace. It breaks my heart to think of how
many children might avoid surgery if only their parents knew or if only their
doctors would try it!
Thanks,
Carol
Dear Sharon,
The words thank you seem insufficient to convey my
gratitude for your
research and article on scoliosis.
My daughter, Sarah, suffers from scoliosis, and was
getting no help or
guidance. After reading your article in Maclean's
Magazine I made an
appointment for my daughter to see Dr.Gorrie. She
now has the brace thanks
to your efforts to share the information. Sarah was
first diagnosed at the
age of 11, just 2 years ago. I was told her curve
was only 5 degrees. Her
curve is now at 27 degrees, and she still has not
gone into puberty, a time
when scoliosis typically increases. The orthopedic
surgeon that I took her
to in New Westminster, BC told me , "that is the way
God made her". He
chided me for taking up his time, and told me that
if her curve gets to 40
degrees that her spine could be operated on.
If life is tapestry of events and people you are the
thread that has bound
many of us together . Thank you for being strong
enough to be the thread.
Due to your research and article Sarah will have a
brighter future.
Sincerely,
Lynn
On 8/5/08,
I have scoliosis. Its somewhere near 30 degrees. I am 15. I have recieved a
custom made back brace for night time wear from Toronto Sick Kids Hospital.
But what 15 year old wnats to sleep in that? The brace was not covered by
the government or our insurance becuase it was not a fulltime brace, it was
only for night wear. At first i didnt care much for my back, but recently i feel liek crying
whenever i look in the mirror. My curve hasnt increased since i started
weraing the brace, but hasnt decresed. I stopped wearing the brace. Its just
too uncomfortable. But i still can't get the image out of my mind, being
hunchedback for my lifetime.
Also when i do continous work, like raking, or cleaning i can feel pain.
What 15 year old has back pain? I am ashamed to bend over in public, even in
class people notice my curve from the way i sit. Of course to a 15 year old
looks do matter, and i have to right to be a little self concious.
One day in art class my art teacher noticed my back, and mentioned your
article. I have been meaning to look it up, finally tonight i did. I didnt
finish all of it, but i was so excited wiht your discovery i woke my mom to
show her the brace that could hopefully fix me.
Before i read your article i thought , thats it, this is my life. But now i
no that even when my body is done developing there is still a chance for a
cure. I can still be fixed. Thank you so much , for giving me hope, and a chance.
Shaheen. :)
Received: Friday, October 3, 2008, 12:49 PM
Sharon,
I read with amazement your story in MacLean's as I too suffer from the
effects of scoliosis and have lived my life in extreme pain for 25+ years.
I am now trying to find out how I can get the SpineCor brace in Manitoba. Do
you have any idea if there is any way I can find out more about this or if
there is any doctor using this practice in Manitoba? Sorry I have searched
the internet and have found nothing but have two wonderful doctors (one in
Ontario and one in Quebec) willing to take me on as a
client but I do not have the financial resources to travel there on my own.
Thank you again for writing your story, it has changed my
life as well as many others that suffer,
Adrienne
Dear Ms. Dunn,
I think I can give you some very good insight as to why SpineCor is not
more well known, but please understand, my findings are subjective.
First, let me start out saying that I absolutely BELIEVE in the
SpineCor system. I attended two days of training along with several
other practitioners from my company. This was only the introductory
session. While all my co-workers attended, I was the only one to
continue on to the second session. I can tell you a lot of the
reasons why I think my co-workers didn't continue.
When we fit a "Boston" style brace, it's a very simple procedure.
You take measurements, (or cast) and send the x-rays to the lab, and
next week, a brace comes back to you. You fit it to the patient,
modifying the borders of the plastic if it sees too high or low, and
send the patient on her (his) way. The doctor will x-ray and if all
goes well, you don't see the patient again till she's outgrown the
brace. Most practitioners collect their money, and almost never do
follow ups, DONE! Do we know if they're wearing the brace? Hardly
ever, and I guarantee that more often than not, most patients are
non-compliant. While I don't mean to be so negative as to say that
most practitioners don't care, I do think a lot of it is "out of
sight, out of mind." We orthotists are, as a whole, very busy people.
Now, SpineCor is very different. First of all, it requires time,
and a lot of it. The first appointment can be as long as two hours.
The fitting appointment about the same. It also requires knowing how a
patient moves, the patient's posture, and the rotational deformities.
It requires a patient to come back on a regular scheduled basis.
(You'd be surprised to find out how reluctant the parents are when
they hear this, but I'm sure a lot of it is just that it's so hard
getting around in NYC.) It requires numerous, uncompensated (as far
as I know) follow up appointments, one month after fitting and every
three months after that. Perhaps, now you see where I'm going with
this. In other words, it's a lot of work, but... it's a good kind of
work. I have had, very many times, those patients who had previously
been fit with plastic braces, who couldn't believe how much better the
SpineCor brace felt, and looked. (Teenagers are nothing if not vain.)
I have had fully mature patients who, though beyond correction, had
such dramatic postural improvement and reported feeling much less
pain, as your son can attest. Not only that, but learning the SpineCor
system has greatly improved my understanding of scoliosis, so that
even when I fill a prescription for a Boston style brace, my
corrections are dramatically better. Becoming involved in the system
has been very rewarding for me, and for my patients.
My purpose in writing this letter to you was simply to try to
illuminate why I think this wonderful system is such a secret. It is
always a struggle to schedule patients for the system when I know how
long it will take. Still I am always delighted to receive a new
referral and would love to have more patients for this treatment.
Please feel free to contact me if you have any other questions,
and I hope your sons success with the SpineCor system continues.
J, Certified Orthotist
I just read your Amazing Brace story (one year later) and wanted you to know that I have a similar story with my son. He was actually put in a hard Boston Brace and told that it would simply put surgery off until he stopped growing. He had just turned 12 at the time. The experience wearing the brace was horrible. My husband and I cried together wondering how we could ask him to wear it until he stopped growing (at 17 or 18). My son’s personality shut down. He became quiet. He could not eat with pleasure. He could not play the sax with ease. I also found the SpineCor brace on the internet. I spoke with one of the chiropractors on the phone for 45 minutes. We have to drive 6 ½ hours to Atlanta to be treated with the brace but it is
worth it. My son wears it all the time except when he showers or swims. It has reduced his curve and he will not need surgery. I discussed the brace with our Orthopedic surgeon and he was adamant that it does not work. He saw the x-rays (that he took) of before and after the SpineCor brace and he still will not agree. It is like talking to an insane person. He told me that he and his colleagues would never use it b/c there is not enough research. He said that he would not do research on it b/c he does not believe in it. I decided to continue seeing our surgeon hoping that at some point he will soften and open his mind. I have been amazed at how the traditional doctors are completely closed to even the possibility that there might be a new way to treat scoliosis.
I appreciate your story and hope that you will continue to
educate the public on this brace. It breaks my heart to think of how
many children might avoid surgery if only their parents knew or if only their
doctors would try it!
Thanks,
Carol
Dear Sharon,
The words thank you seem insufficient to convey my
gratitude for your
research and article on scoliosis.
My daughter, Sarah, suffers from scoliosis, and was
getting no help or
guidance. After reading your article in Maclean's
Magazine I made an
appointment for my daughter to see Dr.Gorrie. She
now has the brace thanks
to your efforts to share the information. Sarah was
first diagnosed at the
age of 11, just 2 years ago. I was told her curve
was only 5 degrees. Her
curve is now at 27 degrees, and she still has not
gone into puberty, a time
when scoliosis typically increases. The orthopedic
surgeon that I took her
to in New Westminster, BC told me , "that is the way
God made her". He
chided me for taking up his time, and told me that
if her curve gets to 40
degrees that her spine could be operated on.
If life is tapestry of events and people you are the
thread that has bound
many of us together . Thank you for being strong
enough to be the thread.
Due to your research and article Sarah will have a
brighter future.
Sincerely,
Lynn
On 8/5/08,
I have scoliosis. Its somewhere near 30 degrees. I am 15. I have recieved a
custom made back brace for night time wear from Toronto Sick Kids Hospital.
But what 15 year old wnats to sleep in that? The brace was not covered by
the government or our insurance becuase it was not a fulltime brace, it was
only for night wear. At first i didnt care much for my back, but recently i feel liek crying
whenever i look in the mirror. My curve hasnt increased since i started
weraing the brace, but hasnt decresed. I stopped wearing the brace. Its just
too uncomfortable. But i still can't get the image out of my mind, being
hunchedback for my lifetime.
Also when i do continous work, like raking, or cleaning i can feel pain.
What 15 year old has back pain? I am ashamed to bend over in public, even in
class people notice my curve from the way i sit. Of course to a 15 year old
looks do matter, and i have to right to be a little self concious.
One day in art class my art teacher noticed my back, and mentioned your
article. I have been meaning to look it up, finally tonight i did. I didnt
finish all of it, but i was so excited wiht your discovery i woke my mom to
show her the brace that could hopefully fix me.
Before i read your article i thought , thats it, this is my life. But now i
no that even when my body is done developing there is still a chance for a
cure. I can still be fixed. Thank you so much , for giving me hope, and a chance.
Shaheen. :)
Received: Friday, October 3, 2008, 12:49 PM
Sharon,
I read with amazement your story in MacLean's as I too suffer from the
effects of scoliosis and have lived my life in extreme pain for 25+ years.
I am now trying to find out how I can get the SpineCor brace in Manitoba. Do
you have any idea if there is any way I can find out more about this or if
there is any doctor using this practice in Manitoba? Sorry I have searched
the internet and have found nothing but have two wonderful doctors (one in
Ontario and one in Quebec) willing to take me on as a
client but I do not have the financial resources to travel there on my own.
Thank you again for writing your story, it has changed my
life as well as many others that suffer,
Adrienne
Dear Ms. Dunn,
I think I can give you some very good insight as to why SpineCor is not
more well known, but please understand, my findings are subjective.
First, let me start out saying that I absolutely BELIEVE in the
SpineCor system. I attended two days of training along with several
other practitioners from my company. This was only the introductory
session. While all my co-workers attended, I was the only one to
continue on to the second session. I can tell you a lot of the
reasons why I think my co-workers didn't continue.
When we fit a "Boston" style brace, it's a very simple procedure.
You take measurements, (or cast) and send the x-rays to the lab, and
next week, a brace comes back to you. You fit it to the patient,
modifying the borders of the plastic if it sees too high or low, and
send the patient on her (his) way. The doctor will x-ray and if all
goes well, you don't see the patient again till she's outgrown the
brace. Most practitioners collect their money, and almost never do
follow ups, DONE! Do we know if they're wearing the brace? Hardly
ever, and I guarantee that more often than not, most patients are
non-compliant. While I don't mean to be so negative as to say that
most practitioners don't care, I do think a lot of it is "out of
sight, out of mind." We orthotists are, as a whole, very busy people.
Now, SpineCor is very different. First of all, it requires time,
and a lot of it. The first appointment can be as long as two hours.
The fitting appointment about the same. It also requires knowing how a
patient moves, the patient's posture, and the rotational deformities.
It requires a patient to come back on a regular scheduled basis.
(You'd be surprised to find out how reluctant the parents are when
they hear this, but I'm sure a lot of it is just that it's so hard
getting around in NYC.) It requires numerous, uncompensated (as far
as I know) follow up appointments, one month after fitting and every
three months after that. Perhaps, now you see where I'm going with
this. In other words, it's a lot of work, but... it's a good kind of
work. I have had, very many times, those patients who had previously
been fit with plastic braces, who couldn't believe how much better the
SpineCor brace felt, and looked. (Teenagers are nothing if not vain.)
I have had fully mature patients who, though beyond correction, had
such dramatic postural improvement and reported feeling much less
pain, as your son can attest. Not only that, but learning the SpineCor
system has greatly improved my understanding of scoliosis, so that
even when I fill a prescription for a Boston style brace, my
corrections are dramatically better. Becoming involved in the system
has been very rewarding for me, and for my patients.
My purpose in writing this letter to you was simply to try to
illuminate why I think this wonderful system is such a secret. It is
always a struggle to schedule patients for the system when I know how
long it will take. Still I am always delighted to receive a new
referral and would love to have more patients for this treatment.
Please feel free to contact me if you have any other questions,
and I hope your sons success with the SpineCor system continues.
J, Certified Orthotist
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