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ltbrown76
01-14-2008, 12:56 PM
Hi Everyone, I'm so glad to have found this site. Our 5y.o. was diagnosed with idiopathic scoliosis about three months ago here at Dallas Scottish Rite. She has a 49 degree and 40 degree curve from mid to lower back in a backward S shape. She receives her first brace in 2 weeks and I'm very concerned about the transition with this.

Also, she is being tested for Prader-Willi syndrome. Although it is sad to have her diagnosed it is also a relief to know why so many of the random, unrelated probems she has exist.

Please help me with any suggestions or advice. I feel overwhelmed and stressed. It's hard raising a special needs child, but I'm thankful to God for the answers He is providing.

Thanks,
Laura

Carmell
01-14-2008, 09:46 PM
Hi Laura - Welcome.

You are not alone. There are several families here who have special needs kids AND they have scoliosis. Your daughter is very young. She has a lot of growing left to do. Hopefully the docs at Scottish Rite will give you the best options/recommendations for her. There are new technologies to treat scoliosis in young children. Maybe one of these techniques will work for her and her multiple medical issues. Is she adjusting to the brace? Sometimes its harder than its worth.

Good luck and keep us posted.

cherylplinder
01-15-2008, 10:08 PM
I wonder if she would be a candidate for vetebral stapling? Usually the maximum curve is 45 degrees, but I know they did a 51 degree curve because it was so flexible. Sometimes overweight children can not be braced as successfully. I am just assuming that with the syndrome you describe, weight is an issue.

Another technique useful in large curves in young children is casting. One friend of mine says she has seen many chubby children cast successfully. Salt Lake City does casting, but more than one Shriners does, I think. Do a NSF forum search on casting and I am sure there is a list of docs that do that. Casting sometimes provides permanent correction of curves whereas the goal of bracing is to hold the curve.

Research your options on your own. Docs tend to have their favorite treatments in their list of options and there are sometimes more effective treatments out there.

In infantile scoliosis, casting can reduce a 50-60 degree curve to the 20's.
I wonder as large as your daughter's curve is if it has been unrecognized for a number of years. The five year old spine is still very flexible and there is a lot of growth left. Growth can be used as a corrective force with casting.
Do a search on casting on this forum and you will see many success stories. My friend, Celia Vogel, has a daughter that was cast from 3 to 5 years of age, I think and reduced her curve from the 50's or 60's to the 20's. The Spinecor brade has her curve at 1 degree.

Another treatment that is an option when bracing, casting, and stapling are exhausted is VEPTR rods which stabilize the curve until growth is finished.


Keep your chin up! There is a lot of help and support here! And God is always good!

Hugs!
Cheryl

ltbrown76
01-15-2008, 10:49 PM
All the info. and direction is so very helpful. Yes, weight is an issue. We've just stablized her weight in the last three months with thyroid medicine and she grew also! I want to buy as much time as possible so that she can grow. I happened to feel a bulging place on her lower back about 6 months ago. That's how we discovered the scoliosis. Thanks again. I'll keep you posted.

Laura

mariaf
01-16-2008, 09:00 AM
Hi Laura,

Welcome!

Cheryl mentioned many good alternatives to bracing. I am most familiar (see my signature) with vertebral body stapling (VBS). My son was 5 when he had it done at Shriners in Philadelphia (Dr. Betz and his team there are THE BEST) and I believe Cheryl was referring to a young boy (4) who I told her about who had a 51 degree curve "stapled" a few days after David. At your son's age, and with so much growth left to do, a 49 degree curve would NOT automatically disqualify him for the VBS. My guess is that the main factor would be how flexible his curve was. If you are interested in this option, you can contact Janet Cerrone at 800-281-4050 or janetcerrone@comcast.net for more information. You can also feel free to e-mail me as well. There's also a VBS support group you can join if interested.

Casting has also yielded some very good results - while a lot of the kids who are casted are infants and very young children, I do not know enough about it to say whether 5 would be too old for this to be a viable option. Also, if you say your are not sure how the brace would be tolerated then I don't know if casting would be ideal.

The VEPTR is another option but it involves multiple surgeries, and is more invasive than VBS. However, it is a great option for some kids (particularly those who, for one reason or another, are not good candidates for other forms of treatment). It allows the child to grow and, as I said, has been a Godsend for some.

I don't know where you live, but I would be happy to find out - if you are interested - which of the Shriners Hospitals (I've learned much about their system in the past 4 years and they are wonderful folks as well) perform VBS and which perform casting or VEPTR - whichever option(s) you might be interested in. Again, my personal experience has been with the Shriners Hospital in Philadelphia and the care there is second to none (we live in NYC and have good insurance but still travel to Philly because we feel that's where David will get the best care).

Best of luck to you!

Q's Mom
01-16-2008, 10:10 AM
Hi, I am new to the forum, but not new to the scoliosis world. My son was diagnosed with scoliosis at 12 months. We seen many doctors who gave us many opinions. We started out with bracing at Hershey medical Center in Hershey PA with no results then the doctor sent us to a hospital in Ohio and they wanted to put my son in a halo, which we were very much against. Finally our Dr. at Hershey said he knew of a doctor at Shriners in Philadelphia that might be able to help us. By this time our sons curve was 68 degrees and progressing. Dr. Betz at Shriners saw us a few months later and decided to try bracing also which didn't yield any results. At 22 months his curve was now at a 95 degree curve and we opted for the Vepter surgery (titanium rib surgery). Finally we had success. My son Quinten's curve went from a 95degree curve pre surgery to a 35 degree post surgery. We have had several expansions done and a second rod placement for a second curve which was a 98 degree curve pre surgery and post surgery it stands at a 45 degree curve. I know those curves sound very pronounced but there are children out there with curves in the 105-125 range. If you are looking aat the Vepter surgery, we have had great results with it and I know that is what I would do again. It what has saved my sons life and kept him out of a wheelchair. My son also has Neurofibromatosis which causes his bones to be soft, so he gets great benefits from the Vepter. There are many conditions that go along with the Neurofibromatosis but we thank the Lord that the only conditions our son has is the scoliosis and a minor heart condition. My son is soon scheduled for a replacement of the one rod. We have had two placements , one rod replaced and 6 or 7 expansions already done. If you are considering the Vepter and have any questions I would be happy to answer what I can. Good luck in your search for the best options.
:)

Cricketblue99
04-24-2008, 03:11 PM
Hi Laura,

I have been on SpineKIDS for a few months and finally got my account set up here. I also have a 5 year old daughter that has been diagnosed with scoliosis. She just got her brace yesterday and - so far - is doing well with it. I'm afraid that there is going to be a period where the "novelty" wears off and she starts to hate it, but for now we're thrilled that she is not fighting us with it. She has a Boston brace, and may need to get a diagonal shoulder strap with it after her next x-ray in four weeks. How is your daughter doing? Have you come across any "tips" along the way that you wish you would have known earlier?

I hope things are progressing well for your family, and I'm glad to see that you have faith in God to help you handle whatever comes along!

~ Stacy ~

gloria1987
04-28-2008, 03:19 PM
My daughter was 6 yrs old when she was diagnosed with Adolescent Idiopathic Scoliosis. When her curve went to 20 degrees, her orthopaedic prescribed a brace. We thought there had to be something better than the brace. We found a site about Scoliosis Correction treatments. We felt we had to try it. It has worked for my daughter. Her curve is now 6 degrees!!! This was confirmed by her orthopaedic, who is not the doctor giving her the Scoliosis Correction treatments. A consultation for this treatment is usually free. I would encourage you to take a look at it. You can find more information about the correction treatment at www.scoliosiscorrectioncenter.com and to find a provider close to you visit www.clear-institute.com and click in as a patient and look for providers near you or something to that affect.

mariaf
04-28-2008, 03:32 PM
Gloria,

I'm sorry to be skeptical but I have never heard of a "scoliosis correction treatment". My son was diagnosed in 2000 and for the past 8 years I have read and researched a TON, and have spoken to many doctors, PA's, nurses, etc. as well as to probably close to a hundred parents.

As far as I (or any of these people) know, there is no treatment or therapy to correct scoliosis. Can you offer any proof that this "treatment" works? (other than from those who perform these treatments).

Again, I'm sorry to be skeptical but I'd hate to see anyone get their hopes up - or worse get ripped off - or even worse, forego a viable treatment option to look into this.

Thanks in advance for your reply.

leahdragonfly
04-29-2008, 09:47 AM
[QUOTE=gloria1987]My daughter was 6 yrs old when she was diagnosed with Adolescent Idiopathic Scoliosis. When her curve went to 20 degrees, her orthopaedic prescribed a brace. We thought there had to be something better than the brace. We found a site about Scoliosis Correction treatments. We felt we had to try it. It has worked for my daughter. Her curve is now 6 degrees!!!



I, like Maria, have to comment about the above post. Idiopathic scoliosis in a 6 y/o is NOT AIS, it is juvenile idiopathic scoliosis. Also, I believe the more commonly accepted standard of care for bracing is 25-40 degree curves, not a 20 degree curve.

We were told at our Shriner's consults, (one with Dr Betz in Philly, the other in Portland with Dr D'Amato) for our 6 year old daughter with a 26 degree curve, that a few juvenile idiopathic curves are non-progressive, and if they are braced they will reduce quickly. I too would be extremely skeptical about some website promising correction.

Also, casting was mentioned above. We were told both by Dr Betz and Dr D'Amato that casting was an option available to us for our daughter.

Gayle

Writer
05-08-2008, 11:07 PM
There is a thread elsewhere on this forum where several members express their frustration with CLEAR.

http://img5.glowfoto.com/images/2008/05/08-1958193242T.jpg (http://www.glowfoto.com/viewimage.php?img=08-195819L&y=2008&m=05&t=jpg&rand=3242&srv=img5)

I would also be skeptical about the "Scoliosis Correction Center". With any treatment, first find out what the basis is, and whether it makes sense. This Dr Hersh states that his treatment starts with the cervical spine, and he apparently puts the patient in a traction chair.

This sounds backwards to me in two ways. It makes more sense to start at the pelvis, the spine's foundation. That is where the Schroth method begins, and works upward. And traction is a passive technique. You aren't going to make permanent improvements with traction. Several chiropractors did that sort of thing with me and it was a waste of time and money. Chiropractic did help short-term with pain management, but physiotherapy helped long-term with the pain.

Maria, I am surprised that you think no corrections can be made. Have you these Before-During-After photos of Schroth patients? The 24-year-old woman's case was so bad that surgeons probably wouldn't have tried to correct it (due do impaired lung function), but the Schroth clinic managed to make significant improvement.

http://www.glowfoto.com/static_image/18-154237L/9476/jpg/04/2008/img4/glowfoto

http://img5.glowfoto.com/images/2008/05/08-1958193242T.jpg (http://www.glowfoto.com/viewimage.php?img=08-195819L&y=2008&m=05&t=jpg&rand=3242&srv=img5)

These are dramatic, but not anomalous cases.

terri watkins
05-09-2008, 12:22 AM
I spent thousands of dollars taking my son to learn the exercises for the schroth method. I bought all the supplies the belt, the pads the bars, the mirrors. Yes there is very noticeable improvement in his spine for all of 5 minutes after he completes a session (it was so wonderful to see his back so straight after he sat up. I cried) then he stands up and there comes the wave in his back again and the hump. So don't be fooled by before and after pics anywhere. We are now scheduled for surgery after many different braces and exercise programs. Atleast the bracing did give him more time for growth.

mariaf
05-09-2008, 11:47 AM
Thanks for posting that, Terri!

You may have saved someone a lot of money AND even more importantly prevented them from having false hopes which, as in your case, were quickly dashed. It's a shame that some folks in this world look to profit in that way - by praying on parents willing to do anything for their kids.

Bottom line - if there was a non-surgical way to cure scoliosis there would be nobody having surgery!

However, much like Santa Claus and the tooth fairy, a quick fix like that for scoliosis just doesn't exist - much as I wish it did.

Writer
05-09-2008, 12:02 PM
Terri, where did you have the Schroth therapy? Scoliosis Solutions? I am surprised that it had no effect. It is successful holding or improving the posture and abnormal curves in most cases, and surgery is seldom thought necessary. I know personal cases myself, and there is a significant clinical literature on this.

Maria, nobody purports that exercise therapy is a quick fix. It is a gradual, lifelong process.

Surgery is the quick fix. But surgery merely replaces one pathology, the twisted spine, with another -- the partially fused or fixed spine. Quite a few post-ops have to go back for more, just read the sad stories in the Revision section.

Any physiotherapy depends heavily on the individual's initiative. I fully accept responsibility for my own health.

I don't know where your contempt comes from. You cannot have done much reading about Schroth principles and practices. The clinic in Germany would not have been operating since 1961, now with 200 patients at a time, if there were not real substance to it.

terri watkins
05-09-2008, 09:59 PM
We went to Maryland to learn the exercises from a lady that was there from Barcelona who was specifically trained in the schroth method. I know I have met others using the schroth method and their curves have continued to progress as well (they are also in brace 23 hrs a day with the only hr or so free of the brace is spent doing the exercises) Talk about quality of life. It doesn't matter where you go to learn the method as long as you have qualified people training you in it. Or oh, I see they must travel abroad for the cure to really kick in... is that it? Well we surely would have gone the extra mile if someone like you would have given us a money back guarantee ... I don't doubt that anything can happen and it may work for some, everyone is different. I appreciated the glimmer of hope I felt at the time. But, that is all it was.
I also revisited a site promoting the schroth method and this was stated on there from a physician: A consultant spinal deformity surgeon at the National Orthopaedic Hospital, Stanmore, Middlesex, Sean Molloy refers some of his patients for postural exercises with NHS physiotherapists.

Techniques such as scoliotherapy may have a place in helping patients who fall into a treatment grey area, he said.

'This method would be a good addition for well-motivated patients with a certain type of curve, for which surgery is not necessarily the answer,' he said. 'But a progressive curve which also has a bony deformity will need surgery.'

Some patients in their teens want an operation to flatten the rib hump and normalise their appearance, he says, but added: 'Surgery is not a cosmetic procedure - the aim is to stabilise the spine to prevent serious mechanical problems with posture and movement in later life.'

Mr Molloy is taking part in a Europe-wide initiative, the Scoliosis Deformity Study Group, which is developing a database on the outcome of different types of treatment for the condition.

He said: 'As orthopaedic surgeons, we welcome anything that helps to educate and support patients, providing it does not delay surgery for those who need it.'

I guess my son just didn't fall into the grey treatment area as his curve was very progressive. But, as he states don't delay surgery if you or your child need it and please don't stay in a denial stage so long that you cause your child irreversible danger.

terri watkins
05-09-2008, 10:30 PM
I am not good with the computer but just called a friend that offered to help me get the video online of one of my sons schroth sessions. If anyone is interested in seeing what this consisted of for my son please give me about a week to get it on here and email me.

mariaf
05-10-2008, 09:13 AM
I also revisited a site promoting the schroth method and this was stated on there from a physician: A consultant spinal deformity surgeon at the National Orthopaedic Hospital, Stanmore, Middlesex, Sean Molloy refers some of his patients for postural exercises with NHS physiotherapists.

Techniques such as scoliotherapy may have a place in helping patients who fall into a treatment grey area, he said.

'This method would be a good addition for well-motivated patients with a certain type of curve, for which surgery is not necessarily the answer,' he said. 'BUT A PROGRESSIVE CURVE WHICH ALSO HAS A BONY DEFORMITY WILL NEED SURGERY.'

........

He said: 'As orthopaedic surgeons, we welcome anything that helps to educate and support patients, providing it does not delay surgery for those who need it.'

I guess my son just didn't fall into the grey treatment area as his curve was very progressive. But, as he states don't delay surgery if you or your child need it and please don't stay in a denial stage so long that you cause your child irreversible danger.

Very well said, Terri. (I highlighted the sentence that I though summed it all up.) I guess since you have lived it, you were able to state it perfectly.

Writer
05-10-2008, 04:56 PM
Terri,

You did the right thing to seek out and try viable alternatives to surgery. I'm sincerely sorry that your child did not get the benefits you hoped from the physiotherapy.

As for Dr Molloy, this was a newspaper report. The reporter was looking for a surgeon to comment on the Schroth method. Molloy gave a less negative opinion than usual for an orthopedist, but it is apparent that he does not fully understand the method. He still labors under the surgeons' unwarranted illusion that physiotherapy will have no significant effect for most patients.

I find it bizarre that the surgeons are denigrating conservative options when actually they should be on the defensive for their own treatments, in several respects. There is a very recent review of clinical literature on scoliosis by another orthopedic surgeon who has a better understanding of all the options.

The abstract and full article are available at this URL:
http://www.ncbi.nlm.nih.gov/pubmed/18418338?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

Weiss points out that "As signs and symptoms of scoliosis cannot actually be cured by surgery, there is no indication for surgery other than psychological reasons." That is, it is ultimately elective. He emphasizes the lack of formal studies to justify spinal fusion surgery for scoliosis, and concludes, "No evidence has been found in terms of prospective controlled studies to support surgical intervention. In the light of the unknown long-term effects of surgery, a RCT [randomized controlled study] is long overdue, while to plan a RCT for conservative treatment options seems unethical when one considers the evidence for these treatment options already available."

On the previous page, Maria has accused Schroth or other conservative practitioners of preying on hopeful parents. But the physiotherapy option costs a few thousand dollars, let's say $5000. What about surgery? I've seen quotes of between $150,000 and $350,000 for spinal fusion on this board. 30 to 70 times as much as a PT program. That's for one surgery. And revision? Our NSF president Joe O'Brien has had five (!) spinal surgeries to the tune of about $500,000 in 2007 dollars, he reported.

Then there is the surgeon himself, upon whom parents rely for recommendation for or against surgery. In one day's work at the operating table, a spine surgeon pockets more than a physiotherapy clinic for a month's work with a patient -- "some twenty to thirty thousand dollars for a fusion." For the source see the New Yorker article on spine surgery by Dr. Jerome Groopman (a Harvard professor), page 3:

http://www.newyorker.com/archive/2002/04/08/020408fa_FACT

I'm sure that orthopedists are in general concerned about their patients' health -- but no more so than physiotherapists and other practitioners. Yet spinal fusion is extremely lucrative, especially since some surgeons also profit from investments in surgical instrumentation, some earning hundreds of thousands per year in "consulting" fees from implant manufacturers. (Reed Abelson has written several articles on this connection in the New York Times since 2003.)

I pose the obvious rhetorical question of how the surgeons can be truly objective under these circumstances.

Pooka1
05-10-2008, 06:27 PM
The abstract and full article are available at this URL:
http://www.ncbi.nlm.nih.gov/pubmed/18418338?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

Weiss points out that "As signs and symptoms of scoliosis cannot actually be cured by surgery, there is no indication for surgery other than psychological reasons." That is, it is ultimately elective. He emphasizes the lack of formal studies to justify spinal fusion surgery for scoliosis, and concludes, "No evidence has been found in terms of prospective controlled studies to support surgical intervention. In the light of the unknown long-term effects of surgery, a RCT [randomized controlled study] is long overdue, while to plan a RCT for conservative treatment options seems unethical when one considers the evidence for these treatment options already available."

:confused:

This must be quote-mined (i.e., out of context which results in sounding ridiculous). If it isn't quote-mined it might be from an non-peer-reviewed journal. Or it might be like the creationism literature... they couldn't get their stuff published in regular science journals (because it is factually incorrect) so they started some journals themselves and claim it's "peer-reviewed." Well yes it is peer-reviewed but by scientifically ignorant folks so it still doesn't count.

We can calculate the rate at which certain kids reach "pretzel" stage from scoliosis, compromising lung function among other things. Further, we have objective evidence that fusion HALTS pretzelization.



On the previous page, Maria has accused Schroth or other conservative practitioners of preying on hopeful parents. But the physiotherapy option costs a few thousand dollars, let's say $5000. What about surgery? I've seen quotes of between $150,000 and $350,000 for spinal fusion on this board. 30 to 70 times as much as a PT program. That's for one surgery. And revision? Our NSF president Joe O'Brien has had five (!) spinal surgeries to the tune of about $500,000 in 2007 dollars, he reported.

Apples and oranges.

Surgery has objective findings of halting and correcting scoliotic curves. Various new age therapies do not. I'll bet they are all included in the JREF $1 million paranormal prize.

So comparing the costs of a proven modality with those of an unproven one is not warranted.



Then there is the surgeon himself, upon whom parents rely for recommendation for or against surgery. In one day's work at the operating table, a spine surgeon pockets more than a physiotherapy clinic for a month's work with a patient -- "some twenty to thirty thousand dollars for a fusion." For the source see the New Yorker article on spine surgery by Dr. Jerome Groopman (a Harvard professor), page 3:

http://www.newyorker.com/archive/2002/04/08/020408fa_FACT

I'm sure that orthopedists are in general concerned about their patients' health -- but no more so than physiotherapists and other practitioners. Yet spinal fusion is extremely lucrative, especially since some surgeons also profit from investments in surgical instrumentation, some earning hundreds of thousands per year in "consulting" fees from implant manufacturers. (Reed Abelson has written several articles on this connection in the New York Times since 2003.)

I pose the obvious rhetorical question of how the surgeons can be truly objective under these circumstances.

And orthopedic surgeons DESERVE what they make. They are the highest paid medical specialists last I heard and there is a reason for that. They have long training periods and carry loads of insurance.

Always remember when noting what various folks make, it's not what you make it's what you clear.

I don't begrudge a dime of what orthopedic surgeons make. Not one. These folks train long and hard. They make a positive difference in this world which is more than some folks can say.

txmarinemom
05-10-2008, 06:36 PM
I find it bizarre that the surgeons are denigrating conservative options when actually they should be on the defensive for their own treatments, in several respects. There is a very recent review of clinical literature on scoliosis by another orthopedic surgeon who has a better understanding of all the options.

The abstract and full article are available at this URL:
http://www.ncbi.nlm.nih.gov/pubmed/18418338?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

I find it bizarre you're citing an abstract (not even an article) that has yet to be published ... much less peer reviewed.


Weiss points out that "As signs and symptoms of scoliosis cannot actually be cured by surgery, there is no indication for surgery other than psychological reasons." That is, it is ultimately elective.

Hmmm. Symptoms of scoliosis (namely years of marked pain when people "elect" surgery in adulthood) can't be "cured" by fusion?

Really.

I lived with horrible back pain from the time I was 10 until I had surgery at 39-1/2. At 13 weeks post-op, I am COMPLETELY pain free, and will return to all pre-op activities in the next 1-2 months.

Do I advocate surgery for everyone? Of course not. It was a last resort for ME, and one I deliberated with thorough research and extreme caution.


I pose the obvious rhetorical question of how the surgeons can be truly objective under these circumstances.

Oh, the irony ;-). You claim to be a Schroth patient. On the other hand, I am *very* curious about your real link to Schroth, and question YOUR objectivity. From a quick skim, it appears every single post you've made on here is an advertisement for Schroth (no matter the age of the patient, or severity of the curve).

How cool you're privy to this miracle and the mainstream medical community isn't!

Then again, if your view is to be accepted, SRS doctors are just entrepreneurial fusion pushers, and my surgeon really cared NOTHING about giving me my life back, pain free.

Regards,
Pam

Pooka1
05-10-2008, 06:44 PM
I'm thinking I need to re-evaluate my past opinion about Pam. :D

I think we can ask an obvious question here... given how expensive this surgery is, and given how insurance companies don't usually kick out a dime for purely cosmetic procedures, what is the explanation for why they pay out huge sums if fusion is purely for cosmetic reasons?

Writer, I would greatly appreciate an answer to that one question if you would so grace this forum with one. You will see this question again if you happen to miss it this time.

Good luck.

Pooka1
05-10-2008, 06:59 PM
http://www.newyorker.com/archive/2002/04/08/020408fa_FACT


Based on the title and subtitle, this concerns back surgery for chronic back pain. Now while there is a nexus between chronic back pain and scoliosis, how relevant is this comment to the aggressively progressive AIS scoliosis cases?

mariaf
05-10-2008, 07:21 PM
On the previous page, Maria has accused Schroth or other conservative practitioners of preying on hopeful parents. But the physiotherapy option costs a few thousand dollars, let's say $5000. What about surgery? I've seen quotes of between $150,000 and $350,000 for spinal fusion on this board. 30 to 70 times as much as a PT program. That's for one surgery. And revision? Our NSF president Joe O'Brien has had five (!) spinal surgeries to the tune of about $500,000 in 2007 dollars, he reported.

Then there is the surgeon himself, upon whom parents rely for recommendation for or against surgery. In one day's work at the operating table, a spine surgeon pockets more than a physiotherapy clinic for a month's work with a patient -- "some twenty to thirty thousand dollars for a fusion."


Writer,

You keep bringing me into this and that's fine - I stated my feelings earlier in this thread and I'm sticking by them 100%.

By the way, there is at least one EXCEPTION to what you wrote about spine surgeons pocketing money based on how many surgeries they perform (and, I agree they DO deserve what they make) - the doctors at all Shriners Hospitals receive a FLAT SALARY, so if they perform one surgery a month or twenty they are making the same amount of money.

Nobody WANTS surgery for themselves for their child, but it is often the best and only way to prevent further progression and problems later on in life.

txmarinemom
05-10-2008, 07:27 PM
Based on the title and subtitle, this concerns back surgery for chronic back pain. Now while there is a nexus between chronic back pain and scoliosis, how relevant is this comment to the aggressively progressive AIS scoliosis cases?

In my opinion (for what it's worth), the nexus is too ill-defined to form an illation based solely from those who post on this forum - or even ALL scoliosis forums.

My reasoning on that is forums tend to skew the control group. I'd venture to guess the absent contingent with non-problematic scoliosis (or those who just don't employ the Internet) are sizable. Without *their* input, relevancy is impossible to determine.

Even within the group that *does* post, the results are inconsistent. Some have relatively minute curves (with extreme pain), and some have massive curves with no pain. More often, it seems JIS/AIS pain worsens in later life - whether or not the curve itself progresses (remember my curve was stable ... only the pain was progressive).

That said, mine *did* progress fairly rapidly at least 4 years pre-menarche, and then spontaneously stopped progression pre-menarche. It certainly wasn't halted by my Boston brace, as I was non-compliant for a large portion of the time.

My outcome (a curve that simply stopped progression - and even held at ±50°, the degree at which MOST curves can be counted on to progress at ±1° per year in adulthood) simply demonstrates the anomalies that make hard data so difficult to gather on scoliosis.

My case also supports the theory some curves will be held by NO type of brace, some curves will be held by ANY type of brace, and some curves will stop/hold left alone - in the absence of a brace.

Writer pulled an article about *normal* chronic back pain in the *normal* population - and poor results of surgeries from DDD, blown discs, etc. It's no secret these surgeries are (for lack of a more accurate term) a crap shoot. Often there are degenerative issues in addition to the issues that facilitated surgery.

I'd estimate half the people I know who've undergone back surgery for disc related issues believe it's the best thing they ever did, and the other half would tell you it stole their lives.

Although the procedure described in the article (PLIF) is similar to what both I and Savannah had, the results described in the article have NOTHING to do with scoliosis, nor is scoliosis even *mentioned*.

While I can only speak for myself, it's my belief the article Writer pulled is non-contextual and completely irrelevant to JIS/AIS (rapid progression or otherwise) and pain.

Regards,
Pam

Pooka1
05-11-2008, 09:22 AM
In my opinion (for what it's worth), the nexus is too ill-defined to form an illation based solely from those who post on this forum - or even ALL scoliosis forums.

My reasoning on that is forums tend to skew the control group. I'd venture to guess the absent contingent with non-problematic scoliosis (or those who just don't employ the Internet) are sizable. Without *their* input, relevancy is impossible to determine.

Even within the group that *does* post, the results are inconsistent. Some have relatively minute curves (with extreme pain), and some have massive curves with no pain. More often, it seems JIS/AIS pain worsens in later life - whether or not the curve itself progresses (remember my curve was stable ... only the pain was progressive).

Yes I agree with all this. The fact that many orthopods don't brace and are not open to malpractice claims as a result is another reason to think the efficacy of bracing has not been determined in the literature.

And of course the fact that chiro and such are explicitly included in the JREF million dollar paranormal challenge for YEARS and the prize still goes unclaimed is a reason to KNOW chiro doesn't work. These folks have had a long time to prove it works (and collect a million dollars) and have failed to do so.



That said, mine *did* progress fairly rapidly at least 4 years pre-menarche, and then spontaneously stopped progression pre-menarche. It certainly wasn't halted by my Boston brace, as I was non-compliant for a large portion of the time.

My outcome (a curve that simply stopped progression - and even held at ±50°, the degree at which MOST curves can be counted on to progress at ±1° per year in adulthood) simply demonstrates the anomalies that make hard data so difficult to gather on scoliosis.

My case also supports the theory some curves will be held by NO type of brace, some curves will be held by ANY type of brace, and some curves will stop/hold left alone - in the absence of a brace.

Scoliosis doesn't appear to be a good candidate for clinical double-blind studies because of the wide variation in cases. It can be done I suppose but it seems difficult. Because of that, much remains unknown at this point and will likely remain unknown. I suspect that specific genetic markers, if they exist and are found, will eventually be able to tell us which cases will progress and which won't. Then all this guesswork will go away, bracing and PT will disappear, and folks can know if surgery is in their future or not and not wait too long.



Writer pulled an article about *normal* chronic back pain in the *normal* population - and poor results of surgeries from DDD, blown discs, etc. It's no secret these surgeries are (for lack of a more accurate term) a crap shoot. Often there are degenerative issues in addition to the issues that facilitated surgery.

I'd estimate half the people I know who've undergone back surgery for disc related issues believe it's the best thing they ever did, and the other half would tell you it stole their lives.

Although the procedure described in the article (PLIF) is similar to what both I and Savannah had, the results described in the article have NOTHING to do with scoliosis, nor is scoliosis even *mentioned*.

While I can only speak for myself, it's my belief the article Writer pulled is non-contextual and completely irrelevant to JIS/AIS (rapid progression or otherwise) and pain.


The article is a red herring in a discussion of scoliosis. If Writer didn't know that then s/he should figure that out. If Writer did know that then s/he is being obfuscatory. So which is it Writer... ignorance or intellectual dishonesty? It's one or the other.

sharon

txmarinemom
05-11-2008, 10:15 AM
The article is a red herring in a discussion of scoliosis. If Writer didn't know that then s/he should figure that out. If Writer did know that then s/he is being obfuscatory. So which is it Writer... ignorance or intellectual dishonesty? It's one or the other.

Unfortunately, not everyone will follow the link and actually read the article; hopefully they WILL read the discusssion here.

All I'll say about MY opinion of why that distractive fish was tossed in the pond is Writer is *not* stupid ;-).

Regards,
Pam

leahdragonfly
05-11-2008, 11:20 AM
Too bad this thread was hijacked by Writer, with the most ridiculously irrelevant article possible to the original topic, and for that matter, to anyone suffering with scoliosis. Pam and Sharon, you two ladies make a formidible team when you pair up together! I love it.

I am wondering how Laura's 5 y/o daughter is doing now? There are so few posts concerning young JIS patients, which is what my daughter has (at age 6). I am always eager to read posts and updates from the parents of kids with scoliosis who are my daughter's age.

Writer
05-14-2008, 05:32 PM
I didn’t expect to convert anybody who has already made up her mind. I presented information, with citations, for those on the board who who have not made up their minds and are searching for scientific studies and objective data. I will not respond to ad hominem arguments.

QUOTE: "So comparing the costs of a proven modality with those of an unproven one is not warranted."

Kindly consult the review article above by Dr. Weiss, who points out – after reviewing a large body of published clinical research -- that the "proven" nature of scoliosis surgery is a great deal less scientifically secure that orthopedists and their patients in the US assume. On pages 183-84 he refers to and discusses briefly a number of studies on results of physiotherapy.

It is true that I usually refer people to Schroth therapists. Newbies are unlikely to have heard of it. People need to hear all aspects of this difficult topic and judge the evidence for themselves. I note that parents or patients here who have been through surgery are quick to urge newbies to find SRS orthopedists, even though the query may appear in the Non-Surgical section.

I discovered the Schroth method ten years ago and have collected a lot of literature about it. In the majority of cases, no matter how severe, it has proven to help a patient who can effectively follow the prescribed routine. The German government gave the founder its highest citizen award decades ago, and the German insurance system also approved the treatment long ago.

I would happily suggest other conservative therapies if there were some that had the same level of comprehensiveness and maturity. Those interested in conservative treatments should also search the web or PubMed on SEAS therapy (Dr. Stefano Negrini), or the Polish physiotherapeutic method by Dobosiewicz. Descriptions of these latter two methods and reports of their efficacy are unfortunately not easily available.

As for the New Yorker article, please read my post carefully: I cited it as reference for the surgeon’s fee amount, a number that is hard to find because of course they do not advertise it.

The European Journal of Physical and Rehabilitation Medicine is peer reviewed with a very long list of editors. The editor in chief, Negrini, is an M.D.

http://www.europamedicophysica.org/en/editorialboard.html

Anyone who wishes may consult the entire article by Dr. Weiss to which I referred above and judge the context and applicability to this discussion for him- or herself. The URL contains not only an abstract but a link to a PDF.

txmarinemom
05-14-2008, 06:52 PM
I didn’t expect to convert anybody who has already made up her mind. I presented information, with citations, for those on the board who who have not made up their minds and are searching for scientific studies and objective data. I will not respond to ad hominem arguments.

The "information" you presented was nothing more than the *abstract* of a paper in progress. No need to respond to questions regarding your motives for pushing Schroth into every thread you can: They're quite transparent, in my opinion.


As for the New Yorker article, please read my post carefully: I cited it as reference for the surgeon’s fee amount, a number that is hard to find because of course they do not advertise it.

I am well aware of the stated intent you claimed in posting that link. You also chose an article that described PLIF - a procedure very close/identical to scoliosis surgery - but for etiologies that cause failure of the procedure as often as success.

Sharon's "red herring" description was quite accurate, and I don't believe for a minute you thought anyone read Page 3 without reading the entire article. Unfortunately, some might have gleaned PLIF surgery, in general, was rife with failure based on the irrelevant link you posted.

I'll echo what others have said: I don't CARE if my surgeon makes more than a physiotherapist, a lawyer, a dentist, me or you. What my surgeon gave me back (JUST my life) can't be defined by a dollar figure, and it's amazingly presumptuous of you to infer his financial gain was the sole motive for MY relief.

Any respect for anything Weiss has ever published was erased by his "expert" view fusion surgery is elective. Thanks for that. You alienated a large portion of your audience here with that revelation ... trust me.

I've stated before, surgery for me was a last resort; carefully deliberated. Your comparison (or agreement to Weiss' view) claiming it's equivalent to a cosmetic, elective procedure is insulting.

Pooka1
05-14-2008, 08:16 PM
I didn’t expect to convert anybody who has already made up her mind. I presented information, with citations, for those on the board who who have not made up their minds and are searching for scientific studies and objective data. I will not respond to ad hominem arguments.

:rolleyes:

Most folks make up their minds based on evidence. I am open to new age approaches if there is evidence to back them up. And I will try to collect the million dollars in the paranormal challenge if anything resembling evidence is forthcoming. The efforts to collect these monies by Schroth, etc. are conspicuous by their absence.

You are the one who has the closed mind. You are not interested in actual evidence. If there was evidence for these non-mainstream approaches, they would be elevated to "medicine" and they would replace surgery. If there was evidence, there's a Nobel in it for the researcher. I note the Nobel in physiology or medicine goes unclaimed by these "geniuses."

Schroth is presently at the stage where a few people "know" it but nobody bothers to show it. Your closed mind is stuck at this point.

Folks pushing Schroth, psychic surgery, chiro, magic crystals, dowsing, ESP, etc. etc. have all their work ahead of them.

sharon

kmahoney
09-11-2010, 03:01 AM
Hi,

My son Oliver has Neurofibromatosis Type 1 (NF1). He is 6 years old. He was just recently diagnosed with scoliosis (T6-T10=31 degrees). It has been 16 days since we found out and I cry everyday. I think today the shock is finally starting to lessen although the tears still fall. I'm doing my best to research and find the best treatment for my son. Dr. Todd Lincoln from Kaiser Oakland, California, is his current doctor. He doesn't think a brace will help but we still asked for one just in case it helps to slow down the progression. Oliver will be wearing a Boston brace. We are waiting to get a second opinion from Shriner's in Sacramento, California (thank you MariaF for letting us know about Janet). Dr. Lincoln doesn't think Oliver will be a good candidate for VBS because he has NF1. NF1 bones are weaker and doesn't heal well.

For those with experience with VBS, what are the pros/cons that you've noticed? A friend who's daughter had VBS said that her curve is now shifting to the opposite side of the staples, past the midline. Is this a common complication?

Any advice will be greatly appreciated.

Sincerely,
Karla

mariaf
09-11-2010, 07:55 AM
Hi Karla,

First of all, I'm sorry for your son's diagnosis. I remember all too well the shock, the tears and the fears of what the future was going to hold.

Did you call Janet over in Philly and she referred you to the nearest Shriners Hospital? Sorry, I was a bit confused :)

My guess would have been that if you were seeking an evaluation for VBS that Janet would have either had you come out to Philly or have one of the doctors review the x-rays and medical records first, before having you make the trip.

In any event, that's not important - what is important is that you remember that scoliosis is a very treatable condition and that these kids lead active, happy and normal lives.

There have only been two cases to my knowledge, where the curve has over-corrected as you described. It is very rare for that to happen - or even for the curve to get to 0. One girl currently has over-corrected about 10 degrees and is wearing a night brace. The doctors in Philly, where the vast majority of VBS surgeries have been performed, are aware of this remote possibility. The will look at the flexibility of the curve - and if it is extremely flexible, they may hold off VBS until there is less growth remaining (i.e., less time for the spine to over-correct).

Also, for example, if a young child presents with a moderate curve, they may wait until that child is at least 7 or 8 to perform VBS for the same reasons - to lessen the chance of over correction. You will see from my signature that my son had VBS six and a half years ago and over-correction has not been a problem. There are so many factors that are taken into consideration. There is no 'one size fits all' treatment plan.

If you have not already done so, I would strongly recommend you join the VBS support forum as well. It is www.vertebralstapling.com. There you will find dozens of parents who will be able to answer your questions regarding VBS from their personal experience.

Also, please feel free to e-mail me if you like.

Best of luck to your son!