9/16/05
(Note: I know there are strong opinions on this site about different treatments, etc. This entry is for parents and offers my personal analytical insight as a Dad on what’s I’ve “taken in over the last 3 weeks. They reflect my opinions and are offered only for insight.)
Tomorrow will complete our first full week in the Spinecor brace and Nikki is wearing it 20 hours per day, including her dance classes. (She will take it off during performances.) The very first day, she had a bathroom accident as she was not used to the straps. To avoid future “bathroom function” issues my wife suggested she wear only the body suit without underwear (we have four body suits and wash them frequently.) No further accidents. Compliance is VERY good and despite her disliking it initially, Nikki has not only accepted it but has named it ROXY. Nicole names all things she likes including her stuffed animals, cell phone, dance bag, etc. After inquiring as to what caused the change, she told me she “loves the brace because she wants it to help her spine and hates that hard brace (boston)”. This was particularly interesting to my wife and I as it occurred in the backdrop of yesterday.
Yesterday, we went to Shriner’s in Philly (I am a Mason and will sponsor anyone needing it) to get a “second opinion”. The doctor had a “great personality” and he was simultaneously, was able to encourage us as parents while not encouraging the use of the Spinecor. He confirmed the previous ortho’s diagnosis but used the measurements of our chiro in NYC to say she has a 37 degree curvature. He believed she is a candidate for surgery if the curve progresses on our next update visit in January. If it does progress, he recommended to stop the bracing, have Nikki enjoy life and prepare for surgery after her growth stops (in 1 to 1.5 years). That will be our last resort as we will go to Germany for the Shroth Method. He felt the lack of peer review on the Spinecor is its biggest weakness and from his experience, “10% of all patients had their curves realigned, 80% had their curves halted (but did not comment on whether or not they had surgery) and 10% got worse”. Those of you in business may recognize this as a Pareto Analysis. On the way home, we discussed with Nikki the possibility of going in the hard brace in January if the curve does not stabilize and the possibility of surgery. She has accepted surgery as a possible outcome (perhaps better than her Dad!) and indicated she would rather have surgery than go in the hard brace. (This resiliency made my wife and I feel a whole lot better than we did 3 weeks ago when we saw how distraught she was at the mention of surgery.)
Here’s are the “facts” I’ve come across.
1. The medical field does not know the cause of idiopathic scoliosis.
2. “Conventional treatment” is simple: hard brace at 25 degrees+ and
corrective surgery if the curve progresses beyond 40-50 degrees. The
occurrence of scoliosis is 8x more prevalent in girls than boys.
3. The treatment theory for hard bracing immobilizes the spine through
inactivity.
4. A 20% reduction of lung capacity and overall muscle atrophy in the back
is common during bracing.
5. Many “innovations” of the hard brace exist including the boston,
milwaukee, wilmington which are actually technological updates of the
braces that have existed since the 1800’s. Bracing is about $3000 and
covered by insurance.
6. Surgery is the only “acceptable” medical method for ultimate spine
correction. Some people have experienced the progression of their
curves halted or even realigned. Surgery costs $100,000 to $150,000.
In the US, of every 1,000 children, 3 to 5 develop spinal curves that are
considered large enough to need treatment. (See NIAMS (National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a
part of the National Institutes of Health (NIH)). This means 42,000 to
70,000 kids are diagnosed with treatable scoliosis. (Surgery for all
diagnosed represents a potential market of $10.5 billion per year)
7. Some people have experienced the progression of their curves halted or
even realigned. The overwhelming majority of these occurrences have
been from continued activity (linkage?) which seems to counter the
rationale behind hard bracing.
8. The overwhelming majority of these occurrences have been with
continued activity and not through bracing, which overwhelming seems to
lead to surgery. (Even the doctor at Shriner’s said many orthos don’t
believe in bracing and go right to surgery.)
9. The medical profession and orthotists appear monolithically unified into
discouraging anything but “conventional treatment” for scoliosis.
10. Legally, doctors cannot prescribe surgery at less than 40 degrees.
My opinions follow. When my wife, daughter and I found out Nikki had scoliosis with a 40 degree curve, we were devastated like most of you, I am sure. As parents were looking for hope to avoid surgery. Our research led us to the Spinecor brace whose only “distribution channel” appears to be with chiropractors. The Spinecor costs $6000 and is not entirely covered by insurance. The suspicious business person considered two questions: “Why are orthos and othotists so unified against “conventional treatment” and “Is the Spinecor practictioner capitalizing on our desire for hope to avoid surgery?” I call this the gimmick factor. After much research and angst on what to do, we decided the Spinecor brace is more fitting to our daughter’s lifestyle and went against conventional treatment. The treatment theory for Spinecor is for continued activity while emphasizing different muscles. We believe the treatment (without chiropractic adjustments) offers us the best chance for halting the progression of the curve and maintaining my daughter’s quality of life but will consider hard bracing and other treatments, including surgery as a last option.
Is it possible a $6000 treatment can seriously reduce the worry and complications associated with a $150,000 surgery. The verdict is out. If it does, as a business man, it will be the best investment I will ever make. What implications does that have on the “scoliosis market”?
Ed
(Note: I know there are strong opinions on this site about different treatments, etc. This entry is for parents and offers my personal analytical insight as a Dad on what’s I’ve “taken in over the last 3 weeks. They reflect my opinions and are offered only for insight.)
Tomorrow will complete our first full week in the Spinecor brace and Nikki is wearing it 20 hours per day, including her dance classes. (She will take it off during performances.) The very first day, she had a bathroom accident as she was not used to the straps. To avoid future “bathroom function” issues my wife suggested she wear only the body suit without underwear (we have four body suits and wash them frequently.) No further accidents. Compliance is VERY good and despite her disliking it initially, Nikki has not only accepted it but has named it ROXY. Nicole names all things she likes including her stuffed animals, cell phone, dance bag, etc. After inquiring as to what caused the change, she told me she “loves the brace because she wants it to help her spine and hates that hard brace (boston)”. This was particularly interesting to my wife and I as it occurred in the backdrop of yesterday.
Yesterday, we went to Shriner’s in Philly (I am a Mason and will sponsor anyone needing it) to get a “second opinion”. The doctor had a “great personality” and he was simultaneously, was able to encourage us as parents while not encouraging the use of the Spinecor. He confirmed the previous ortho’s diagnosis but used the measurements of our chiro in NYC to say she has a 37 degree curvature. He believed she is a candidate for surgery if the curve progresses on our next update visit in January. If it does progress, he recommended to stop the bracing, have Nikki enjoy life and prepare for surgery after her growth stops (in 1 to 1.5 years). That will be our last resort as we will go to Germany for the Shroth Method. He felt the lack of peer review on the Spinecor is its biggest weakness and from his experience, “10% of all patients had their curves realigned, 80% had their curves halted (but did not comment on whether or not they had surgery) and 10% got worse”. Those of you in business may recognize this as a Pareto Analysis. On the way home, we discussed with Nikki the possibility of going in the hard brace in January if the curve does not stabilize and the possibility of surgery. She has accepted surgery as a possible outcome (perhaps better than her Dad!) and indicated she would rather have surgery than go in the hard brace. (This resiliency made my wife and I feel a whole lot better than we did 3 weeks ago when we saw how distraught she was at the mention of surgery.)
Here’s are the “facts” I’ve come across.
1. The medical field does not know the cause of idiopathic scoliosis.
2. “Conventional treatment” is simple: hard brace at 25 degrees+ and
corrective surgery if the curve progresses beyond 40-50 degrees. The
occurrence of scoliosis is 8x more prevalent in girls than boys.
3. The treatment theory for hard bracing immobilizes the spine through
inactivity.
4. A 20% reduction of lung capacity and overall muscle atrophy in the back
is common during bracing.
5. Many “innovations” of the hard brace exist including the boston,
milwaukee, wilmington which are actually technological updates of the
braces that have existed since the 1800’s. Bracing is about $3000 and
covered by insurance.
6. Surgery is the only “acceptable” medical method for ultimate spine
correction. Some people have experienced the progression of their
curves halted or even realigned. Surgery costs $100,000 to $150,000.
In the US, of every 1,000 children, 3 to 5 develop spinal curves that are
considered large enough to need treatment. (See NIAMS (National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a
part of the National Institutes of Health (NIH)). This means 42,000 to
70,000 kids are diagnosed with treatable scoliosis. (Surgery for all
diagnosed represents a potential market of $10.5 billion per year)
7. Some people have experienced the progression of their curves halted or
even realigned. The overwhelming majority of these occurrences have
been from continued activity (linkage?) which seems to counter the
rationale behind hard bracing.
8. The overwhelming majority of these occurrences have been with
continued activity and not through bracing, which overwhelming seems to
lead to surgery. (Even the doctor at Shriner’s said many orthos don’t
believe in bracing and go right to surgery.)
9. The medical profession and orthotists appear monolithically unified into
discouraging anything but “conventional treatment” for scoliosis.
10. Legally, doctors cannot prescribe surgery at less than 40 degrees.
My opinions follow. When my wife, daughter and I found out Nikki had scoliosis with a 40 degree curve, we were devastated like most of you, I am sure. As parents were looking for hope to avoid surgery. Our research led us to the Spinecor brace whose only “distribution channel” appears to be with chiropractors. The Spinecor costs $6000 and is not entirely covered by insurance. The suspicious business person considered two questions: “Why are orthos and othotists so unified against “conventional treatment” and “Is the Spinecor practictioner capitalizing on our desire for hope to avoid surgery?” I call this the gimmick factor. After much research and angst on what to do, we decided the Spinecor brace is more fitting to our daughter’s lifestyle and went against conventional treatment. The treatment theory for Spinecor is for continued activity while emphasizing different muscles. We believe the treatment (without chiropractic adjustments) offers us the best chance for halting the progression of the curve and maintaining my daughter’s quality of life but will consider hard bracing and other treatments, including surgery as a last option.
Is it possible a $6000 treatment can seriously reduce the worry and complications associated with a $150,000 surgery. The verdict is out. If it does, as a business man, it will be the best investment I will ever make. What implications does that have on the “scoliosis market”?
Ed
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