New to Forum, 5 yr.old w/Scoliosis

[terri watkins]

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]

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]

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/1...ubmed_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/200.../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]

The abstract and full article are available at this URL:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_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."

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/200.../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]

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/1...ubmed_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]

I'm thinking I need to re-evaluate my past opinion about Pam.

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]

http://www.newyorker.com/archive/200.../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]

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]

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]

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]

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]

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]

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/e...rialboard.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]

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]

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.

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