Regarding likely outcome on pain

[ScoliSkye2]

Hi,
You know Skye doesn't have any pain at all. Her curve issue for "her" is cosmetic, however the doctors believe that the curve will cause her difficulty in the future because it continues to progress - I hope the outcome for her is not a life of pain (because of the surgery) whew! back to my prayer closet.

[Pooka1]

Hi,
You know Skye doesn't have any pain at all. Her curve issue for "her" is cosmetic, however the doctors believe that the curve will cause her difficulty in the future because it continues to progress - I hope the outcome for her is not a life of pain (because of the surgery) whew! back to my prayer closet.

Pain after the recovery period in kids is rare per the material I was given.

And you always have to compare that to the pain (and disability) associated with no treatment of the scoliosis. This point is routinely glossed over by some folks. Other people with scoliosis is the baseline, not the general population.

Surgery isn't really choice for many kids. I think it is always viewed as a co-equal choice with no surgery by some who don't really know what many parents are actually dealing with.

[ScoliSkye2]

I agree Sharon,
As parents we have to try to know what is best for them and implement it. Thanks!
Docs and all I have read agree that it is best to have the surgery while they are still growing and young as they manage it better.

With anything we make our best choices and pray that they are the right ones. I got off on this pain thingy and felt for a minute ~ am I opening a can of worms. You know Pre-op gitters :-)

[Pooka1]

I agree Sharon,
As parents we have to try to know what is best for them and implement it. Thanks!
Docs and all I have read agree that it is best to have the surgery while they are still growing and young as they manage it better.

With anything we make our best choices and pray that they are the right ones. I got off on this pain thingy and felt for a minute ~ am I opening a can of worms. You know Pre-op gitters :-)

Yes I know what you mean.

Steady. Forward. These guys know what they are doing. We are lucky to have the instrumentation available now. Kids with scoliosis years ago had many less optimal choices unfortunately. It was rational in my opinion to avoid surgery in many cases before the modern instrumentation.

At my one daughter's recent visit with the surgeon, the issue came up over choosing surgery. The surgeon said there was no choice in my daughter's case but other people do seem to have some choice either because the curve is smaller or not curving as fast or whatever.

In re pain, I am sure some kids have pain beyond the recovery period but per our surgeon's experience that is rare. He sees them until they are 18 so depending on the average age at surgery, that's likely several years.

And I'd like to see these studies on post operative pain compared against kids who are not treated. I don't see how it is publishable to compare against the general population. As with so many things, it's a number and you can measure it but it doesn't mean anything.

Good luck.

sharon

[Pooka1]

Just a note on the three UK-based members of the editorial board.

Peter Dangerfield was an extremely well-respected scoliosis surgeon in the 1970s to early 1990s, but it looks like he teaches rather than practices today; he is definitely one of the older generation of consultants and he has retired from medical practice. He no longer appears on the list of registered Consultants for the UK. I would have great faith in his knowledge and experience but his age, combined with his teaching work at Liverpool University, make me wonder if he is able to devote much time to editing this journal or whether he delegates this work instead.

The other two members I have never heard of, which is perhaps surprising because I have been an active part of the scoliosis support scene in the UK for nearly ten years now.

Josette Bettany-Saltikov is a lecturer in Research Methods at Teeside University and her background is in physiotherapy. She appears to be very professional and I wouldn't doubt her skills in these areas, but she is not (as far as I am aware) a medically-qualified doctor. Maybe she concentrates on reviewing articles written by other physios.

Dr Nachiappan Chockalingam does not appear on the General Medical Council's register either. He is an academic, and is Professor of Clinical Biomechanics, Sport and Exercise at Staffordshire University. His research appears to encompass general biomechanics and does not seem to focus on the spine or on scoliosis.

Thanks for contributing that.

The editorial board are (is?) the people who decide where to send the papers out for review as far as I can tell. They may do some reviews themselves, I don't know.

That journal just gets curiouser and curiouser in my opinion. They have raised eclecticism of expertise to a zen art. They should concentrate on lining up appropriate reviewers as best they can, something that is often hard to do when the appropriate people are just too busy.

[mamamax]

They have raised eclecticism of expertise to a zen art.

Nominating this for most colorful phrase of the week! Maybe year - Like it a lot!

Thanks Tonibunny for your input on the UK board members. I'm going to take a look at each one just because - well I don't have a hot date tonight

I think we are finding that we have a wide range of expertise here - from the upcoming president of SRS to ... well don't see the Dali Lama yet, but the line up is looking well rounded. This would make some sense as there as there is a wide range of treatment available for the condition.

Pondering music selection as I do this ... Rolling Stones?

Happy New Year Everyone!

[mamamax]

We have also seen cases like Spinecor where surgeons did apparently try it on the strength of inventor reports and then abandoned it.

but ... were they fully qualified/trained to treat - unsupervised??

[Pooka1]

but ... were they fully qualified/trained to treat - unsupervised??

Is it rocket surgery?

How about compared to spinal fusion?

[mamamax]

Is it rocket surgery?

How about compared to spinal fusion?

Not a rocket scientist or a surgeon so I can't answer that adequately. But I can say this - one needs to know what they are doing, and if they don't .. they will not duplicate the results of those who do.

[LindaRacine]

I thought everyone would like my using that paper . It is, however, the only recent paper that I see that actually tries to quantify the specific pain results with percentages, at least in the abstracts.

All the latest studies pretty much say something like "This long-term follow-up of Harrington rod fusion for adolescent idiopathic scoliosis showed no important impairment of health-related quality of life", which basically doesn't tell anybody about the significant disability of a portion of these cases. Perhaps now that they compare them to the general population, they can ignore them. The studies from about twenty years ago were actually much more forthright. (And yes, I'm using the Harrington rod studies for a reason).

And your other study is only for a two year time frame. There seems like there might be an issue with pain increasing after the two year mark after surgery, even a member of this board has recently had that happen, and it seems to be shown as statistically significant in the other study I mentioned. So hopefully, they'll be doing on a follow on study with these same people at a five year time frame and perhaps into the future.

Don't get me wrong, I truly hope that people are getting help with their pain through surgery, but it looks to me that lots don't. Perhaps Dr. Anand could post his own results to the board as he must have a significant number of cases and longer term results to be stating what he does.

Long term? You want long term?

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=3

CONCLUSION: When compared to a control group of equal sex, age, weight, and height, adolescent idiopathic scoliosis patients had a slightly higher incidence of back pain. When compared to the control group using short form-36 evaluation, the patients had statistically equal scores in all 8 domains. Most patients were able to perform most activities of daily living.

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=9

CONCLUSION: We evaluated long-term QOL in patients treated surgically for scoliosis, and found that it was not impaired, particularly in the case of patients with idiopathic or congenital scoliosis. Larger preoperative Cobb angle and positive sagittal balance at the most recent follow-up were related to poor outcome in QOL as assessed by the SRS-22.

http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=88

CONCLUSION: Radiologic results, patient satisfaction, and mean scores for quality of life and back function were excellent after CD instrumentation for AIS, but a considerable number of patients had treatment for back problems.

http://www.ncbi.nlm.nih.gov/pubmed/1...ordinalpos=122

Results of about 10 years of follow-up these patients treated with TSRH instrumentation suggest that the method is efficient for the correction of frontal and sagittal plane deformities and trunk balance. In addition, it results in a better life-quality.

As far as I'm concerned, quoting anything that Weiss does is a great way to lose credibility. As Weiss shows, there are plenty of studies showing the complication rate of scoliosis surgery. Those studies were published by the surgeons who had the complications. They're not hiding anything. Weiss apparently can't publish his own long-term followup studies. Instead, he attacks the surgeons who have helped thousands of people every year, in an effort to deflect criticism of his methods. By only using the negative papers in his literature review, he shows that he's either jealous or on some sort of vendetta.

--Linda

[Pooka1]

As far as I'm concerned, quoting anything that Weiss does is a great way to lose credibility.

You said it. Several months ago, I said the same thing... if anyone quotes that Weiss "debate" paper then I will assume they are conceding the point.

As Weiss shows, there are plenty of studies showing the complication rate of scoliosis surgery. Those studies were published by the surgeons who had the complications. They're not hiding anything. Weiss apparently can't publish his own long-term followup studies. Instead, he attacks the surgeons who have helped thousands of people every year, in an effort to deflect criticism of his methods. By only using the negative papers in his literature review, he shows that he's either jealous or on some sort of vendetta.

--Linda

There is something up with Weiss it seems. He adopts the tactics of the nonsense purveyors though he is a surgeon.

[Ballet Mom]

This is just silly.

Let's recall what started this thread. An orthopedic surgeon comes trawling through this site on two separate occasions advertising like any common chiropractor.

Here is his second advertisement, verbatim:

Addressing Your Concerns About Surgery

Hello, I can understand your concerns about having spine surgery and I'll be happy to address them.

I consider Minimally Invasive Spine Surgery techniques to be the answer. Smaller incisions, less blood loss, less risk, quick recovery, minimall discomfort - patients usually only taking Tylenol after the first week or so, No ICU - Intensive Care Unit post surgery, and you will be standing up straight.
I also do second opinions using phone, internet and reviewing x rays, there is a lot of information about minimally invasive techniques and information about second opinions.

A minimally invasive procedure can straighten out your spine and eliminate your pain.

hdugger and I question the doctor's proclamation that he can eliminate your pain. Fortunately for the doctor, he's a God in Pooka's eyes and therefore can do anything he wishes and she proceeds to debate the word "can" just like Bill Clinton debated what the meaning of the word "is" is.

And now we're back to the old standby comments of Pooka.

There is something up with Weiss it seems. He adopts the tactics of the nonsense purveyors though he is a surgeon.

It's hard for Pooka to allow anyone to have any thoughts different than her own party's programmed beliefs. It is a shame because there are people that don't wish to just be popped into surgery at forty degrees and would like an alternative to at least try before making a decision about a major surgery that will impact their life forever. I personally don't believe the Europeans are lying about their claims about bracing and exercise.

I think it's a shame we don't have a few doctors here in the U.S. where people with scoliosis could go to try out promising exercises, etc. to try and keep their curves from progressing and attempt to avoid surgery, and not have to resort to quacks in order to try. These patients would be under the guidance of a true medical doctor, doing actual research and reporting to the American academy their results. But apparently the "gatekeepers" must not allow that to happen as obviously nothing the Europeans do could possibly be valid.

I'm actually tempted to try and convince my sister the M.D. to start a practice in it, I think it's needed here in the U.S.

[Pooka1]

It's hard for Pooka to allow anyone to have any thoughts different than her own party's programmed beliefs.

and

But apparently the "gatekeepers" must not allow that to happen as obviously nothing the Europeans do could possibly be valid.

There is no European bashing going on.

I don't have "beliefs." Rational people ACCEPT facts based on the evidence.

[Pooka1]

I'm inclined to excuse some of what Weiss writes based on bad translation. But not the majority of it.

It is useful to document the performance of the old instrumentation because plenty of people are walking around loose with that and because that is an integral component to designing new instrumentation. But he continually elides the difference between the old and new instrumentation and outright says that the results for the old apply one to one to the new (with his use of verb tense in the "debate" article).

I can name the people who were fooled by this here and on other fora. It is misleading the bunnies in real time.

[LindaRacine]

I think it's a shame we don't have a few doctors here in the U.S. where people with scoliosis could go to try out promising exercises, etc. to try and keep their curves from progressing and attempt to avoid surgery, and not have to resort to quacks in order to try. These patients would be under the guidance of a true medical doctor, doing actual research and reporting to the American academy their results. But apparently the "gatekeepers" must not allow that to happen as obviously nothing the Europeans do could possibly be valid.

http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=20

CONCLUSIONS: Quantified trunk rotational strength training significantly increased strength. It was not effective for curves measuring 50 to 60 degrees. It appeared to help stabilize curves in the 20 to 40-degree ranges for 8 months, but not for 24 months. Periodic additional supervised strength training may help the technique to remain effective, although additional experimentation will be necessary to determine this.

http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=79

CONCLUSIONS: The combined use of spinal manipulation and postural therapy appeared to significantly reduce the severity of the Cobb angle in all 19 subjects. These results warrant further testing of this protocol.

http://www.ncbi.nlm.nih.gov/pubmed/1...ordinalpos=109

Sixteen of 20 patients demonstrated curve reduction, and no patient showed an increase in curve.

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=8

A 16-year-old girl with a 60 degree lumbar curve progressed and had surgery. None of the remaining patients progressed, and 4 of the 12 had decreases in their curvatures from 20 degrees to 28 degrees. None of the patients used braces during this study.

All we're asking for are a few follow-up studies.