Spinecor Brace on 9/16
(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
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”?
Wow! You said a mouth full!
First let me say I'm glad you went to Philly for a second opinion. Keep looking until you find a doctor that everyone in your family is completely happy with. I personally took my daughter to five different doctors and I don't regret any of the time or money we spent.
I'm glad you have done your research. Please keep us posted on the results you get with the Spinecor brace.
Last edited by Mary Lou; 09-18-2005 at 10:11 AM.
with a daughter of 11 with 29 degree T12 scoliosis, I am very much in a similar position, and can understand a lot of what you are trying to do. We considered the spinecor, but for the moment have "chickened out" whilst we are awaiting to see how well we are doing with hard-bracing and exercises (we'll find out next month)
Inherently there seems to be much logic behind the spinecor and the evidence published seems very convincing, however, little backup from orthopaedics elsewhere makes you wonder.
Some things I'd look at
1) what was the initial correction achieved when the spinecor was fitted? Obviously the more initial correction the better your chances of succes.
2) is your chiropedist accredited and properly trained by the company? You can check by emailing the companydirector, email on their website (www.spinecorporation.com)
For more information re treatment in geermany go to www.skoliose-info-forum.de , which is a german forum, however they can manage english contributions (special english corner on the site). Somewhere you'll find the thread "schroth therapy for 11 year old", which was my question, answers are interesting but appear a bit dogmatic (specially their emphasis on the benefits of aggressive bracing). Worthwhile to have a look though.
Please keep us posted on developments and further insights gained
with best wishes
We also looked at the spinecor for our daughter. But the orthopedist stated we only have one chance with our child and really discouraged the use. Also on review of the literature, there were only two studies and they were from the originator of the spinecor. There is not enough long term study on its use. But I do believe it makes common sense and the child would be more agile.
Please keep us updated with your progress.
Gerbo-- What type of exercises is your child performing?
Thanks for your insights
Last edited by HIMOM; 09-19-2005 at 11:04 AM.
1) just plain swimming, 2-3 x weekly
Originally Posted by HIMOM
2) some symmetrical exercises aimed at strengthening backmuscles
3) we are trying to replicate an approach as taken by a Dr Vert Mooney, i.e torsorotation against resistance (if you want to know more, go to www.medxonline.com, > medical rehab equipment >pdf downloads > "role of measured resistance exercises in idiopathic scoliosis". Whether you think his approach makes sense or not,(I do) at least it is an interesting article to read
What situation are you in with your child, what brace, how much correction in it??
Spinecor Bracing...NEWBIE to GROUP
Next week we go to Chicago for a SpineCor Brace. We just found out last week that our 13 year old daughter has a lower curve. So far, we don't know what degree, but her reg. doc, an MD, was ready to do something with her. We showed him the spinecor brace and he seemed very open.
Since our insurance runs out this month, we had to make some fast decisions. After living on the internet for days, we decided that the spinecor brace looks like our best option. The chiropractor that (also) looked at her & took x-rays, claimed he could "straighten" her. Hmmmmmmmmmm.... the very next visit would only cost $500.00...and our daughter would need these "visits" every 10 days. (more at first)
We do think that a chiropractor & the spinecore brace will help, but we need to find a chiro that is honest & cheap. LOL! Perhaps I need to get a job at a local office? LOL!
One concern about the spinecor brace is this:
We have not found many that have posted about it. We are really interested in hearing feedback from others if you have/are using it and what are the results.
I have read what their website says, but would like to hear more from people actually using it.
Oh....My daughter let me know that if she had an accident in brace that I could not post it! LOL! LOL! However, she added that this piece of information was very helpful to her because if she has trouble, she'll not be devasted. LOL! TEENS!
do not understand the implications of your insurance running out (in UK we have a completely statefunded system) it does appear that you are running ahead of yourself.
Has your daughter been seen by a orthopaedic consultant with experience with scoliosis??
If you do not know how big the curve is, how can you know whether she needs a brace in the first place??
maybe you have gone through all that, but that isn't clear from your posting
all the best
No one is running ahead of themselves. From what I got from Shebee's message is this: in the U.S. we usually get our insurance through our employers. Therefore, if you change jobs, you are sometimes left without insurance for a month or so until you've worked at your new job long enough to be enrolled in their insurance. Also, in the U.S. most insurance companies have a maximum amount of money they will pay for each person over their lifetime. And sometimes, insurance companies don't want to pay for a pre-existing condition.
I think i kind of understand, it is about getting something done whilst it being paid for by the insurance.???
still, till some extend you need to know whether something needs to be done in the first place, although I would imagine that where ever you go for the brace, they would advice on this.
lots to be said for our good old (muchmaligned) National health service
gerbo & all ...spinecor brace
Yes, our insurance system is different. My husband was very ill for a long time, so he was unable to work, but in America, you can pay a to stay on your insurance. We did this...costing $1,000.00 a month, but it will run out the end of this month.
My husband can now go back to work, but we will have a lapse in our insurance until it picks up again in 2-3 months.
We had x-rays done at the chiropractor’s office and took them to our MD doctor. He is not an orthopedic doctor, but has had enough experience to know something needs to be done right away. Our MD doctor agreed that bracing with a flexible brace seemed like a good option. Our other option was physical exercise and a "wait & see" attitude.
Since she is already starting to have back pain, doing nothing does not seem like a good option. At least with bracing, we feel like she has a chance at correction or stabilization. If she has to have surgery in the future, and we did nothing, I would always wonder if bracing would have helped.
In many ways, our insurance is great. We are able to go to a specialist without "pre-approval." On our insurance plan we can choose what doctor we want to treat us without going through a lot of red tape.
Although we don't know her cobb angle & etc. as of yet, we decided that we would find out at the Spinecor Clinic. Looking at other's x-rays on the web and comparing them to our daughter's, we know that she needs bracing. Her spine is already starting to twist some and she has a good sized curve in the lumbar area.
We don't have time to waste. She is already 13 and the clock is ticking on our insurance. We have a few days left. (It takes 1-2 months to get in to see an orthopedic doc in our area. )
So off we go on an 8 hour driving adventure to another state.
I'll post more information and keep you all informed on her progress.
You might want to see if you can get someone to evaluate your daughter's skeletal maturity, because if she has had her period, especially if she started a year or more ago, it's unlikely that the brace will be of much help.
Thank you so much...and if we had the time, we would do that...
The problem is this: we have just a few more days before our insurance runs out. I would rather get a brace and find out later that we don't need it than to need it and not be able to get it.(...and we have paid over 10,000+ this last year to keep our insurance. )
...also, I think that she is still growing. Her cousins (girls) are very tall, and her brothers are over 6ft tall. She is 5'5" right now. My sister's girls are at least 5'7"+, so I think she is still in the growing stage. Our family seems to produce Amazon Girls. LOL!
It is a tough decision...to brace or not to brace.
Even if the brace just stablized her, it would be good. I have had many sleepless nights wondering what we should do...
We can always take her brace off at a later date, but we might not be able to get a brace at all if we wait.
I really appreciate you feedback; thank you so much,
I don't mean to be confrontational, but if we all had the same attitude, we'd all be paying a LOT more for insurance than we already are. I understand that you're in a tough situation, but I honestly think you're doing the wrong thing. From what I've heard and read, the success of the Spinecor brace is highly dependent on the person who fits it. So, even if your daughter were to be skeletally immature, chances are that the brace won't be successful unless you can get it fitted by a doctor who has a lot of experience in fitting the brace.
When my husband was very ill and needed surgery, we looked around and found the very best doctor available. Finding that doctor meant (once again) traveling to another state for laproscopic surgery. This doctor pioneered this type of surgery and the cost to our insurance company was almost the same. Our cost was huge. We had to travel and he was an out of network doctor, so that meant higher deductibles.
The alternative “normal” surgery meant that his rib cage & muscles would have to be cut. By finding a laproscopic surgeon who could do the same surgery, he had three small incisions, and he was out of the hospital in two days; healing time was a few weeks, as opposed to being laid up for eight months and never healing right, nor being able to do his job again.
So believe me, I searched for someone that could evaluate & treat our daughter with expertise. Her own doctor (MD) is in agreement. (The first Chiropractor that we saw just wanted our money. We will not be going back to him for anything! ...especially to get fitted for a spinecor brace.)
As for the insurance…we have paid in for years with only a few minor claims before my husband became ill. Before that time our family had been in great health. Even our dental expenses were next to nothing. We have paid our share and more.
A situation like this is the exact reason why we have health insurance.
We still have high deductibles and must still pay a percentage of the cost. We also have traveling expenses and etc….all at a time when we can least afford it. We have been paying very high premiums to stay on our insurance. We KNOW that we have insurance now, but what “if” something goes wrong and my husband’s insurance does not pick up back up in the future. This would mean that our daughter would not have any treatment/brace for quite some time. Many new insurance companies do not pay for pre-existing conditions.
As a mother, I would have a hard time justifying not using our insurance.
To sit back and do nothing or waste time taking her to an orthopedic surgeon seems like a waste of precious time and money. We want to avoid surgery at all cost, if possible. Orthopedic doctors take 1-2 months to schedule an appointmenst. By then our insurance would be out. If her spine in still somewhat immature at this point, 1-2 months just might make a big difference.
Linda, I sincerely thank you for your opinion and don‘t find you at all confrontational.
We are traveling to another state in order to get a doc that works with the Spinecor Brace. I am sure that we will get a good fit. If she does not need a brace, then at least we will have a complete exam and know exactly what we should do. I don’t believe that the doc will put her in a brace just for the fun of it.
At least we will have some answers and can go from there…
Last edited by Shebee; 09-25-2005 at 11:29 AM.
Reason: added information
Hi all…I just wanted to check in. We have been traveling in the car for over 24 hours all together. Out of three days, we have been in the car for over one. My daughter and I drove to Chicago to see Dr. Pappas for evaluation and fitting of the Spinecor brace. Once we got to Chicago, I decided if I thought anything was not “right” or not going to help, we would walk out the door and go back home.
Our doctor was wonderful and well worth the long, long drive and expense. He was very knowledgeable and professional while being a lot of fun. Our daughter has a 20 degree lumbar curve. Taking a wait & see attitude does not seem like a good option.
Fortunately the top of her spine is not curved, too.
The fitting of the Spinecor brace took 5-6 hours, but time passed quickly. It takes a lot of time to get this brace fitted correctly. My daughter says it feels like she has seat belts strapped all over her body. LOL!
My daughter was great. After our appointment, we headed back toward home. After driving for hours, we finally got something to eat and found a hotel. She cried a lot that night. I almost told her to “brace up,” but I soon realized that getting a brace is a very traumatic experience even when you are prepared for it and willing to wear it. The emotional aspect is a lot like losing a loved one….you go through many different stages. Unbelief…mourning….anger…acceptance. She went back and forth and is still working through these stages. She is now leaning more toward acceptance at this point. She is awesome.
She has been in the brace now for a few days and said that it felt strange to have it off. It is already becoming a part of her.
She is very upset about her clothes, finding it a bit difficult to hide the brace and still remain fashionable. J
I am exhausted. I’ll write more later about our experience. I am convinced that we have did the right thing.