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PLR
04-08-2009, 04:17 PM
Our son has been recommended for spinal fusion surgery. To help us get a feel for what that might mean, I've been looking for scholarly papers that provide statistics on fusions. I'd love to know, out of all fusions ever done:

patient age
patient sex
reason for surgery (e.g. idiopathic scoliosis)
surgery details (e.g. types of instrumentation)
how many had immediate problems, including problem type
how many had problems in 1 year, 5 years, 10 years, etc., including problem type
how many had no problems

etc.

If you aware of any such studies, please post.

I'd guess this would be a very common question - sorry if it's been asked & answered before. I've looked some through pubmed etc. and I'll continue looking. Hopefully someone else has already gone through this search.

Summary of our son's situation:
diagnosed with Chiari malformation, Summer of 2006, age 8
decompression surgery, Oct 06
diagnosed with progressing spinal curve, 50 degrees, Fall 2008
currently not experiencing any symptoms

Thank You

Pooka1
04-08-2009, 04:29 PM
Hi. Welcome.

I'm not sure the universe of fusion surgeries is going to be AT ALL relevant to your son's situation. I don't even think the non-Chiari fusions (i.e., AIS, Marfan's etc.) in kids are necessarily relevant but what do I know?

What will be most relevant are surgeries for Chiari done with modern instrumentation at a particular bone age.

Good luck.

PLR
04-08-2009, 04:45 PM
Hi Pooka

Right, I'm really mostly interested in surgeries closest to my son's situation (11 year old male, Chiari, etc.) but I sort of expect I'd have even less luck finding something that narrowly focused. I'm really surprised I haven't found statistics for a broader set of criteria though...

Best Wishes

Pooka1
04-08-2009, 04:54 PM
I'm guessing there are at least some outcome papers for Chiari in kids of various bone ages but I don't know that.

I think the best bet is to ask a few surgeons who have done numerous Chiari fusions with modern instrumentation. But maybe they don't specialize at that level (Chiari vice AIS vice Marfans). Then you just need that many more opinions.

Now that you bring it up, I wonder what percentage of kids' fusions are attributable to AIS vice Chiari vice Marfans vice etc.. I'm guessing the largest group wll be AIS but I don't know that.

Again, good luck.

marmyte
04-08-2009, 05:44 PM
PLR i don't want to appear negative because i think the research you're trying to do for your son is great, but i doubt that you'll get the information you want. spinal fusion surgery in its current incarnation is relatively new (i'm not sure where she heard it, it may have been my surgeon who told us, but my mum said that orthopaedics is 20 years behind every other surgical genre in terms of development) - the current instrumentations and techniques have been used widely since the mid 90s and ok that's now over 10 years, but if you consider that most patients are in their teens, those people aren't all that old now! this worried my parents a lot about my surgery: that long term effects aren't really known but you kind of just have to jump off that cliff.

most people weigh up the benefits of having surgery vs the costs of doing nothing and when you look at it like that, it's a no brainer.

as i said, i doubt the papers you are looking for exist, though i'm sure they're in development. studies about what patients are like at 1 year post op (and even 2 to 5 years) would be largely useless in my opinion, because some people will only have finished fusing at a year, you wouldn't expect to see a drastic difference between then and the day of the surgery (in terms of it having a negative impact on their life, it would generally only be positive at that point).

most fusions for AIS are done on girls, JIS is more prevalent in boys and i'm not sure what the stats are for infantile and congenital scoliosis in terms of gender. patient age... well that's a huge variety. some people are diagnosed with AIS but don't have surgery until they are in their 50s for whatever reason.

sorry i can't be of any more help but like i said, i don't think the research you require in the format you're looking for will be available. however, between the members of this forum there are many experiences available. you will, of course, be able to ask your son's doctor how many surgeries he/she has performed on cases similar to your son's and get an idea from that information.

Karen Ocker
04-08-2009, 05:49 PM
I had an old original, uninstrumented fusion in 1956!!!!. It served me well over 40+ years ---and then had a successful revision 6+ years ago. Scoliosis surgery is over 40 years old---but techniques and instrumentation are now far superior.

Snoopy
04-08-2009, 05:50 PM
PLR,

Welcome!

I'm not sure you'll find the studies you are looking for, but have you tried the SpineKids forum? It is similar to this forum, but is visited mostly by kids/teens and a few adults. I know there are several kids on that forum with Chiari malformations and have had surgery. If nothing else, you might find some of the information helpful. Good luck.

Mary Lou

Pooka1
04-08-2009, 05:51 PM
(snip)Scoliosis surgery is over 40 years old---but techniques and instrumentation are now far superior.

You're not kidding.

About 95% of kids need no physical restrictions whatsoever to get a good fusion with the new instrumentation.

That's AMAZING.

txmarinemom
04-08-2009, 10:22 PM
Our son has been recommended for spinal fusion surgery. To help us get a feel for what that might mean, I've been looking for scholarly papers that provide statistics on fusions. I'd love to know, out of all fusions ever done:

patient age
patient sex
reason for surgery (e.g. idiopathic scoliosis)
surgery details (e.g. types of instrumentation)
how many had immediate problems, including problem type
how many had problems in 1 year, 5 years, 10 years, etc., including problem type
how many had no problems

etc.

If you aware of any such studies, please post.

PLR, it's highly unlikely that study exists.

There is a broad study on older instrumentation Linda Racine listed not long ago, but that's as close to what you're seeking as I believe you'll find. There are a few studies out there on AIS fusion surgery, but not really long-term results.

Spinal fusion hardware and techniques have changed so much over the years, data in a long-term study would become practically irrelevant before compiled. Comparison of fusion surgery results with no instrumentation, fusion surgery with Harrington rods, Luque wires, CD systems, Moss-Miami, ISOLA, TSRH, etc., etc. would be pointless. The different generations of hardware are like apples to oranges, although I know plenty of people with just about all types that have had issues - and those who haven't. Anecdoctal, not science.

Also, it's rare to see a study list the *exact* type of hardware installed. For that matter, many people *here* don't know what they have inside them.

The best thing you can do is read these forums for real stories. BTW, you said your son has Chiari, which pretty much disqualifies a patient for inclusion in any broad study - especially mixed with AIS/JIS patients. ACM patients aren't a majority among fusion patients: Most studies that *are* done on fusion are done on AIS/JIS fusion surgery.

Good luck to y'all.

Regards,
Pam

Beckymk
04-08-2009, 11:56 PM
You're not kidding.

About 95% of kids need no physical restrictions whatsoever to get a good fusion with the new instrumentation.

That's AMAZING.

I know the people at our church have had this reaction :eek: when they find out that Carolyn has no brace & has already been up & about.

Especially the secretary that had this fusion done when she was a kid & said she had to stay flat on her back for 6 months & I believe in a cast.

It really is freaky to think they get this back surgery and then they have them up & walking within days! Carolyn is almost 4 weeks and we have already been to the mall a few times (she can do about 2 hours).

As for the studies, I will be of no help because basically we just jumped for the surgery. Carolyn's was idopathic but her dad has the scoliosis & we could see what she would be like without the surgery (not that it's really stopped him much other than a few things).

LindaRacine
04-09-2009, 12:48 AM
Hi PLR...

Even if such a study existed (I'm sure it doesn't), it could be meaningless to you. What you really want to know are the outcomes of your surgeon, on children of similar age to your son, and who had essentially the same fusion. Outcome studies are really great, but if your surgeon is a hack, they're of no use. It could also be the other way around (where the outcomes were poor, but your surgeon is much better).

Good luck!

Regards,
Linda

rtremb
04-09-2009, 03:37 AM
PLR

This is one article you might find interesting.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18826571

I am not wanting to comment on the content. The article gives some views for and against surgery. This was originally posted onto this site late last year by another member of this forum.

Ruth

Pooka1
04-09-2009, 10:04 AM
PLR

This is one article you might find interesting.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18826571

I am not wanting to comment on the content. The article gives some views for and against surgery. This was originally posted onto this site late last year by another member of this forum.

This article leaves much to be desired in the writing and editing departments for the "con" surgery side. I don't think it is a peer-reviewed journal based on this article.

The "con" surgery side is listing old articles (1941!!!) that are IRRELEVANT to modern surgical techniques and instrumentation. I question the editing and peer review (if any and I doubt it).

The most important point is that there is no alternative to surgery. Surgery is the only proven option at this point. So you can attack surgery but you can't put up something in its place. What other group pushing counterfactual information does that remind you of???

Surgery clearly cures the signs and symptoms of scoliosis. It did for my daughter. Moreover, there are indications the earlier you get surgery, the LESS problems you have down the road. This article needs to be retracted by the journal in my opinion.

txmarinemom
04-09-2009, 11:21 AM
PLR

This is one article you might find interesting.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18826571

I am not wanting to comment on the content. The article gives some views for and against surgery. This was originally posted onto this site late last year by another member of this forum.

An pro/con surgery debate co-authored by H.R. Weiss, citing (deliberately?) antiquated references is a useless tool in making an informed decision on whether to operate.

Yes, Ruth, this article has been posted before. If you'll recall, it's the one that caused so much uproar with ridiculous statements like:

"Health-related signs and symptoms of idiopathic scoliosis cannot be changed by surgery." and " ... the indication for spinal fusion surgery is for cosmetic reasons, only. "

Both statements are absolute nonsense.

The ONLY treatment for scoliosis that can affect health-related issues (organ impingement with higher curves, for example) is fusion surgery. Period.

And spinal fusion is purely cosmetic???

Fusion surgery is performed to address pain, prevent progression, stabilize the spine to avoid damage/further damage, prevent or reduce organ impingement, and a multitude of other very NOT cosmetic reasons.

I can assure you *I* didn't have it done because I didn't like the way I looked, and I find that statement as insulting as I did the first time someone drug it out (not surprisingly, by a Schroth proponent who refuses to reveal his seemingly vested interests).

The obvious bias and/or ignorance represented in this article are quite possibly part of why many here are so dubious of Schroth.

Regards,
Pam

LindaRacine
04-10-2009, 12:22 AM
The most important point is that there is no alternative to surgery. Surgery is the only proven option at this point.
Really? Are there randomly controlled studies? ;-)

Pooka1
04-10-2009, 07:45 PM
Really? Are there randomly controlled studies? ;-)

:D

Are there randomly controlled studies on whether or not to set broken arm bones?

I wager NOT! Yet we still have the great run of ER surgeons doing just that!!!

:D:D

But seriously folks... :)

That pro/con article is a joke. For the same reason some legitimate scientists don't debate young earth creationists (there can be no debate between science and religious dogma), I don't think legitimate orthopedic surgeons should debate those pushing crackpot, counterfactual positions either.

rtremb
04-11-2009, 01:59 AM
As far as I know none of us are doctors. The article is written by doctors therefore one might be wise to read the information they are providing with an open mind...only fools rush in...

JulieBW
04-11-2009, 07:35 AM
I will chime in on the question of aging fusions. Mine was done over 40 years ago. I have some degeneration at the base of my fusion, but the problms are ones I can live with, do not warrant revision. My surgeons (Godfrey/Weiss) were doing fusion surgery at the rate of one per week when mine was done. I have never seen anyone here who had these surgeons. People who post here are mostly the ones with problems. The flatback issue casued many problems, I am fortunate mine is thoracic. I believe there are many people aout there with no significant problems.

Snoopy
04-11-2009, 09:16 AM
I will chime in on the question of aging fusions. Mine was done over 40 years ago. I have some degeneration at the base of my fusion, but the problms are ones I can live with, do not warrant revision. My surgeons (Godfrey/Weiss) were doing fusion surgery at the rate of one per week when mine was done. I have never seen anyone here who had these surgeons. People who post here are mostly the ones with problems. The flatback issue casued many problems, I am fortunate mine is thoracic. I believe there are many people aout there with no significant problems.

Julie,

You are absolutely right. A lot of people on this forum come here because they are having problems and are looking for advice.

Mary Lou

Pooka1
04-11-2009, 10:23 AM
As far as I know none of us are doctors. The article is written by doctors therefore one might be wise to read the information they are providing with an open mind...only fools rush in...

You wait around long enough not "rushing in" and you can find every crackpot out there.

If you think posting a citation from 1941 in 2008 is intellectually honest then I can't help you. You need more work with skeptical thinking and just being way more familiar with the issues here than you seem to be. You have to have a minimum baseline from which to tell the wheat from the chaff that appears to be missing in many of your posts. Even basic stuff like thinking VBS wasn't experimental three years ago when it is STILL AS I TYPE experimental surgery. This is very basic, Ruth.

Pooka1
04-11-2009, 12:26 PM
from the pro/con surgery article posted in this thread...

The 1941 reference:

"The early belief was that spinal fusion could be used to leave the patient with a mild residual deformity but this is not the case as one third of patients lost all postoperative correction within one to ten years post surgery [54]."

54. Shands AR, Barr JS, Colonna PC, Noall L. End-result study of the treatment of idiopathic scoliosis. Report of the Research Committee of the American Orthopedic Association. J Bone Joint Surg (Am). 1941;23:963–99741.

Note there are at least two problems with this. The "con" surgery folks are talking about what was the early belief (in their opinion... not necessarily the case) and then instead of saying "this WAS not the case: they say "this IS not the case" falsely implying that the outcome achieved prior to 1941 applies to today, now.

Note also the pagination. With just these two problems in this one short passage and reference, I am guessing this article was NOT edited by peers or anyone.

Ruth, some doctors are crackpots. Some doctors write papers of questionable intellectual honesty. Some doctors lose their license. Some doctors design braces that they are trying to sell.

Doctors are not perfect and make mistakes.

In these cases, you don't have to be a doctor to figure out which way the wind is blowing.

txmarinemom
04-11-2009, 02:32 PM
As far as I know none of us are doctors. The article is written by doctors therefore one might be wise to read the information they are providing with an open mind...only fools rush in...

Ruth,

Sharon's got a point about the skeptical evaluation of information, and the simple fact someone's a doctor guarantee their slant on a topic is anything more than a poorly veiled to further a vested interest.

Of *course* the people with Schroth want to discourage surgery ... it's in their favor to do so and get more people in their program. It's unfortunate they used complete falsehoods to further that goal (and wrote such a biased paper some people obviously think is legitimate), but what do you expect?

Just because a paper exists doesn't mean it's true and accurate.

Out of curiousity, how would you justify:


"Health-related signs and symptoms of idiopathic scoliosis cannot be changed by surgery."

and


" ... the indication for spinal fusion surgery is for cosmetic reasons, only. "?

Do you believe either one of those assertions are correct? If so, please explain why.

It doesn't take an M.D. to interpret either statement, and the utter inaccuracy of both makes the entire paper - and motives of the authors - suspect. And "only fools rush in" to what *exactly*, Ruth? Ignoring an inaccurate paper, or believing it just because a doctor authored it?

Regards,
Pam

Pooka1
04-11-2009, 07:18 PM
Ruth,

Sharon's got a point about the skeptical evaluation of information, and the simple fact someone's a doctor guarantee their slant on a topic is anything more than a poorly veiled to further a vested interest.

The lack of appropriate skepticism is arguably responsible for all the couterfactual nonsense that runs through society today besides quack medicine including ESP, tarot cards, ghosts, goblins, devils, demons, young-earth creationism, world-wide flooding, fate, etc. etc. etc.


Of *course* the people with Schroth want to discourage surgery ... it's in their favor to do so and get more people in their program. It's unfortunate they used complete falsehoods to further that goal (and wrote such a biased paper some people obviously think is legitimate), but what do you expect?

Desperate, ignorant people are looking for answers. The subset of these people who are irrationally afraid of surgery are going to seek out quack and lay sources that are riddled with ignorance, errors and lies because it reinforces their belief that they already hold with respect to surgery.

It is no different than the folks who tout the counterfactual young-earth creationism sites. They already believe it so they refuse to bring the appropriate skepticism to the table. A cursory review of the actual science easily refutes all this counterfactual stuff. It's a lack of intellectual honesty. A crisis even.

rtremb
04-12-2009, 03:54 AM
How can anyone be so sure that surgery is the right thing to do? It is somewhat offensive to suggest that a person should not investigate all possible treatments for scoliosis. Just because it is European doesn't mean it isn't good for some people. Did anyone ever think about how much money it costs for spinal fusion surgery and how much money the doctors who do this surgery are making? -- probably way more than the Shroth doctors/staff.

I don't know why you are attacking me Sharon. You do not know if you know more about this subject than I do so I would take it kindly if you would stop attempting to insult me. Respectfully I thank you in advance for your consideration of my feelings and respecting the fact that you do not know me therefore you would be wise to not assume how much reading I have done or have not done on this subject.

Ruth

Pooka1
04-12-2009, 11:02 AM
How can anyone be so sure that surgery is the right thing to do?

Using EVIDENCE. Just like for everything else in your life when the rubber hits the road. It is really no different, Ruth. But you have to be able to understand what you are reading. You have posted two articles, one in a lay magazine and one is an apparently non-peer-reviewed journal that are both riddled with counterfactual information. Ask yourself if you could pick out which statements are counterfactual and why.

Anything less than evidence is worthless.

There is evidence about which curves should be fused when.

There is evidence about which curves should not be fused ever.

There is skepticism borne of a lack of evidence. This is what drives science forward and gets real answers to real problems. It's also what weeds out quackery and paranormal nonsense from reality.

There is also skepticism borne of ignorance and fear. I have never found this to be helpful. Just my experience.

Good luck.

PLR
04-13-2009, 02:44 PM
Thank you to all who have responded - I truly appreciate it.

I'll keep searching for studies as I outlined. I'd love to base our decisions on cold, hard, well-documented, vigorously-researched facts taken over a long period of time. But I realize that crystal clear guidance isn't always available.

I agree that the skill of one's surgeon is extremely important; our surgeon is well-respected and performs lots of fusions. So I feel OK there.

Our son's scoliosis is not currently causing pain or other problems. His curvature is noticeable, but only if you know what to look for. He is very athletic. Given that he has several more years of growing to do, we'd love to be able to avoid surgery as long as we can. Forever, hopefully.

I found several papers by Dr. Weiss. He seems to be one of the few anti-surgery voices. I wonder if he'll be able to convince the medical community...

Pooka1
04-13-2009, 02:57 PM
I found several papers by Dr. Weiss. He seems to be one of the few anti-surgery voices. I wonder if he'll be able to convince the medical community...

He'd convince virtually everyone in the medical community if he would actually pony up some non-anecdotal, REPEATABLE evidence for his claims. In ~90 years, nobody has ponied up evidence for Schroth. We know this independently because nobody has been awarded the Nobel in medicine for devising a method to avoid fusion surgery.

In the meantime, he publishes "look at the wookie" type articles attacking other (proven!) treatment modalities or review articles, NEITHER OF WHICH constitutes one iota of proof FOR Schroth.

A consultant for Quackwatch has weighed in on Weiss and Schroth. The thread is called "Quackwatch and Schroth" or "Schroth and Quackwatch" if you are interested.

Good luck.

Pooka1
04-13-2009, 06:42 PM
I earlier answered just your first question because it was the most important BY FAR. Here are some more thoughts...


It is somewhat offensive to suggest that a person should not investigate all possible treatments for scoliosis.

Why waste time investigating long-standing "treatments" with no evidence in the form of controlled studies?


Just because it is European doesn't mean it isn't good for some people.

I have no idea what you are driving at here. Europeans hold many Nobels.


Did anyone ever think about how much money it costs for spinal fusion surgery and how much money the doctors who do this surgery are making? -- probably way more than the Shroth doctors/staff.

Did you ever stop to realize that there is a damn good reason why posterior spinal fusion is considered the "gold standard" treatment? Also, have you considered WHY insurance companies kick out all that money, sometimes a quarter of a million dollars, for these fusions? Do you think Weiss is correct that this is only cosmetic? Someone needs to send a telegram to the insurance companies to stop paying for all this cosmetic surgery!

Only evidence for efficacy, like fusion sugery has shown, would justify a single dime going to Weiss/Schroth... evidence that Schroth has had ~90 years to produce. The world is still waiting.


I don't know why you are attacking me Sharon. You do not know if you know more about this subject than I do so I would take it kindly if you would stop attempting to insult me. Respectfully I thank you in advance for your consideration of my feelings and respecting the fact that you do not know me therefore you would be wise to not assume how much reading I have done or have not done on this subject.

Ruth, I am not trying to attack you. Everyone is entitled to their own own opinions. They are not entitled to their own facts. Agreed? For example, You don't get to unilaterally declare that VBS was not experimental three years ago. Okay?

rtremb
04-13-2009, 08:04 PM
Sharon:

You are mis-understanding me. You are correct about one thing -- I have an absolute fear of (and distaste) for spinal fusion surgery for my dear daughter. It is the thing we want least of all for her and we will only have it done if her life is in danger if she doesn't have it done. That is our family's decision - our choice. Please don't give me your opinion about our decision - it will not change our position.

Shroth began in Europe before spinal fusion was available. It has helped thousands of people to cope with their scoliosis and avoid spinal fusion surgery. I consider discouraging people on this forum from investigating this treatment method is really unfair and shows a bias in favour of spinal fusion surgery.

This is just my opinion. I am entitled to it. Please respect that.

Ruth

Pooka1
04-13-2009, 08:07 PM
Sharon:

Shroth began in Europe before spinal fusion was available. It has helped thousands of people to cope with their scoliosis and avoid spinal fusion surgery.

Is this an opinion or a fact?

Facts require evidence.

txmarinemom
04-14-2009, 01:02 AM
An answer I'd like to hear ... plus the 2 questions I asked a *ways* back.

Ruth, you need to realize people who don't agree with you aren't "attacking" you. You throw something disingenuous like that paper in the mix, and people will respond ...

Incorrect information will be disputed.

concerned dad
04-14-2009, 09:36 AM
The OP asked for surgery statistics.

Ruth gave her a reference with surgery statistics.

It turns out to be a debate article. Pro and Con.

Under the heading "Surgery for AIS is safe and efficient" it looks like there are the statistics and references (to recent articles in reputable journals) that the OP was looking for.

Are you saying the Pro surgery info in the paper is false, biased or misleading?

Pooka1
04-14-2009, 09:49 PM
Are you saying the Pro surgery info in the paper is false, biased or misleading?

No I think there are at least some legitimate surgeons who will debate the woo-woo crowd.

But it's debatable whether the woo-woo crowd should be given a stage or be legitimized by there being an impression of a debate afoot. For the same reason, Gould didn't, and Dawkins won't, debate young earth creationists AFAIK.