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Thread: Does bracing work? style and success to date

  1. #16
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    Bless you, thank you for your kind comment

    I think the current bracing literature is all over the place, and it's not an area I have taken time to study properly, so I really don't feel qualified to comment on it. If I had a child with scoliosis I would go through everything thoroughly, but I'd also make sure they were treated by the very best consultant in the country (which I believe to be my own current consultant) and I'd trust his judgement regarding their particular case.

    My childhood was fine really, that screaming fit was just five minutes of angst because I didn't have the maturity to tell the nurse why I was so upset when they produced the brace! Had I been older, I might have explained what my mother had said. This is probably the only time I ever kicked up a fuss or got upset because of a brace. (ETA: oh, it really hurt too. They had put a pad right in the middle of the back that pressed on the bottom of my new rod, and I had to try to hyperextend away from it to stop it from hurting. I didn't have the resources to explain that either).


    My lumbar curve was left unfused to allow me to grow some more, as I was only ten. My fusion ended up running from T1-L3, so if they had fused the lot when I was ten it would have restricted a great deal of growth.

    As for crankshaft - I'm amazed that this is ever a problem these days. It was a known issue back in the 1970s! Crankshaft is only a problem when the spine has been fused along one side and the growth plates are still intact. I had an anterior release, discectomies and fusion done as well as the posterior fusion in order to prevent this. My thoracic spine is one solid chunk of bone, my surgeon made sure it wasn't going anywhere

    Despite that, my rib hump continued to progress. I read somewhere a long time ago that this can happen in cases of IIS and JIS post-fusion, and I personally know of other cases where it has happened. I had one costoplasty at the same time as my lumbar fusion, but the rib hump STILL progressed and I had a second costoplasty when I was 25. I'm actually really shocked at the measurement of my rib rotation - 29 degrees before the first costoplasty - the Scoliometer only goes up to 30! It now measures about 15 degrees.

    ETA Bigbluefrog, my apologies for taking your thread off topic slightly. Hopefully the data I provided is interesting to you though
    Last edited by tonibunny; 10-20-2009 at 09:47 AM. Reason: More info re: the brace I hated

  2. #17
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    Quote Originally Posted by Pooka1 View Post
    SRS pointed out the lack of knowledge generated by these uncontrolled studies several years ago but it went unheeded EXCEPT for the BRAIST Study. Maybe the SRS should issue a more strongly worded statement to stop uncontrolled studies for the sake of these kids.
    What are you referring to here? I am not aware of any SRS statement on the issue.
    The only thing I can recall somewhat related is the SRS Guideline/criteria paper addressing ways to make the uncontrolled studies more meaningful. As a group, have they come out with anything about Braist?

  3. #18
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    Quote Originally Posted by concerned dad View Post
    What are you referring to here? I am not aware of any SRS statement on the issue.
    The only thing I can recall somewhat related is the SRS Guideline/criteria paper addressing ways to make the uncontrolled studies more meaningful. As a group, have they come out with anything about Braist?
    I finally found it. It is not really a statement... I misremembered there... but a mention of the launch of an SRS study specifically in recognition that the previous studies were uncontrolled and therefore didn't really answer any pertinent questions...

    http://www.scoliosis.org/resources/m...entbracing.php

    In 1985, the Scoliosis Research Society (SRS) initiated a study to investigate the effectiveness of bracing as a treatment for scoliosis. Many previous studies of full time bracing showed that braces stop about 80% of curves. All of these studies, however, were "uncontrolled" which means there were no simultaneous groups of untreated, unbraced patients for comparison. Therefore, there was some doubt that brace treatment of scoliosis was effective, and concern that bracing may be no different than "natural history" or what happens when no treatment is undertaken.

    What I question is why they got to 1985 before realizing uncontrolled studies are useless. The rest of science realized that little "detail" WAY earlier. Actually I have come to understand why controled studies are not the norm in medical literature. And I have realized why this is probably the number one reason why most published research results are false. Can it be more obvious what is going on here? There is a reason you can't even published uncontrolled experiments the other scientific fields. Yet these studies seem to constitute the bulk of the medical literature. Again, I know why. But again, we shouldn't be amazed why most results turn out to be false given that.

    I am not aware of any "group" statement about BRAIST nor would it be interesting necessarily. We are all dealing with the same literature, yes? Nobody is secreting any controlled studies, right?

    And I think things would be cleared up considerably if they simply asked three questions:

    1. Do you believe bracing works?

    2. Do you have good evidence bracing works?

    3. Do you understand why these questions represent a distinction that is a real difference?

    Belief is NOT a way of knowing. That said, bracing might eventually be SHOWN to work. The poor studies to date cut both ways... it's possible a favorable result has been hiding in the miasmic literature. But someone has to show it, not just "know" it when we are talking about putting baby kids in braces.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

    Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else

    Quote Originally Posted by Pooka1 View Post
    Belief is NOT a way of knowing. That said, bracing might eventually be SHOWN to work. The poor studies to date cut both ways... it's possible a favorable result has been hiding in the miasmic literature. But someone has to show it, not just "know" it when we are talking about putting baby kids in braces.

  5. #20
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    Quote Originally Posted by hdugger View Post
    It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

    Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else
    Excellent points. You are batting 1000 in that regard, BTW.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #21
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    Regarding the topic of bracing, I think the best advice would be to find a doctor that is current with the literature. One who is aware of the strengths and weaknesses of the evidence. And then, follow their advice.

    Hdugger, I hope you don’t take this as a contradiction of what you said, rather it is offered as an amplification (with caveats). The thing is, had we followed the advice of our first orthopedic doctor, we would not have made, what turned out to be, the right choice for her specific circumstance.

    The obvious problem is how to assess the doctors qualifications in that regard. The parent needs to have some understanding of the issues, both pro and con. And I don’t think it is easy to gain that understanding at a forum.

    I propose a reading list for parents considering bracing.

    1. The Nachemson “controlled” bracing study, reported on in 1995. The one that is claimed to have “demonstrated with statistical certainty that bracing is effective compared to natural history”.

    2. The various critiques of the Nachemson study, such as Dickson in 1999 when he said regarding the Nachemson study: One hundred and eleven braced patients were compared to 129 observed and 46 electrically stimulated. The failure rate was an increase in Cobb angle by 6°. On this basis 36% of the braced, 52% of the observed, and 63% of the stimulated failed and these differences achieved statistical significance. The next paper in the same journal looked at factors that affect natural history and one of the most compelling features was that thoracic curves had a much worse prognosis than thoracolumbar curves. Looking now at the proportions of the more progressive thoracic curves in the three trial groups, 89% were thoracic in the stimulated group, 81% in the observed group, and a mere 68% in the braced group. Meanwhile, in the paper originating in PuertoRico, 70% of the untreated group had thoracic curves and 46% of the treated group. It would be difficult to stack the odds better. I still remember the first time I read that. I almost threw up. This paper was my real first eye-opener on the bracing debate.

    Or Goldberg’s 2001 paper where she notes about the 1995 study that it was:”criticized on the grounds that the groups were not as well matched as they might have been, that 6° of progression is a trivial change, and that no account was made of ultimate outcome. As pointed out by Skaggs, an untreated thoracic curve progressing from 25° to 35° but at maturity being acceptable cosmetically and not requiring surgery would be regarded as a success by the child who had had an untrammeled adolescence.” and he concludes with "the question of the efficacy of orthoses in idiopathic scoliosis remains unresolved"

    3. Dolans 2007 Metanalysis paper where she concludes, after evaluating (almost) all the bracing literature: "Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. the use of bracing relative to observation is supported by troublingly inconsistent or inconclusive studies of any level.”

    4. SOSORTS critique of the Dolan metanalysis (Reference req’d) where they question why she excluded the (mostly european) studies that incorporated exercise as an adjunct to bracing. (damn good question I might add)

    5. The 2005 SRS Bracing paper Standardization of Criteria for Adolescent Idiopathic Scoliosis Brace Studies where they basically say that there is far too much variation in the variables of the bracing studies to draw conclusions. And, they offer a set of criteria for future bracing studies to make them more useful/interpretable/comparable.

    6. The 1998 paper by Soucacos that looked at 85,000 kids in Greece and reported on the “natural History” of scoliosis in these kids over a 5 year period.

    7. For balance, maybe one more paper to add to the reading list: Danielsson in 2006 updated the data from some of the girls who participated in the 1995 Nachemson study.

    Our present results do not change the principal conclusion of the original SRS study: that well-performed brace treatment prevents curve progression during adolescence in patients with moderate AIS, while
    observation as the intended treatment allowed 70% of patients to escape any treatment at all and left 10% with surgical treatment and 20% with brace treatment.


    And he also poses the following question

    One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

    And the Key Points from his paper were reported by him to be:

    Key Points
    ● Patients in cohorts with moderate- or smaller sized AIS curves at maturity had not deteriorated (beyond their original curve magnitude) at the 16- year follow-up if they had been braced initially. If only observed during adolescence, curves increased as much after maturity as those of braced patients, leaving the patients with a slightly larger curve size.
    ● No patients in the group of patients who were initially braced underwent surgery, while 6 in the observation group required surgery during adolescence, compared with none thereafter.
    ● Patients who were premenarchal at inclusion ran a higher risk of progression.


    I think these 6 or 7 papers would go a long way to illuminate some of the issues about bracing efficacy. But, there are no answers to the question “Does Bracing Work” in these papers.
    Last edited by concerned dad; 10-28-2009 at 01:54 PM. Reason: add Danielsson 2006 and changes he to she for Goldgerg

  7. #22
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    CD's post should be a sticky in the bracing section in my opinion. It is very valuable.

    Two points...

    1. In re your getting sick over the stacking of T curves in the observation group in Nachemson and Peterson (1995)... the real take home is that other folks happened to identify one confounder (different propensities for progression) out of a potential universe of confounders. We can't assume that is the only one or even the most significant one although it is very important. That is the key point for me. We don't know what we don't know.

    2. in re not including the bracing+PT: I have been thinking about this and agree with not including it. I think there is enough evidence that curves can be reduced temporarily with PT such that it is a real confounder. Heck, that Spinecor article you posted had a kid reduce her curve by 11* just standing in a rakish manner.

    3. I'm not convinced SOSORTS is evidence based.

    ETA: THREE POINTS!!! (said in Monty Python fashion!)
    Last edited by Pooka1; 10-22-2009 at 08:05 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #23
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    Quote Originally Posted by Pooka1 View Post
    What did the curves start out at?

    Are you saying she came out of the brace at 25* and that has never increased even to what it was prior to bracing? How often has she had radiographs since? How recently?

    I wasn't aware there was evidence bracing would permanently reduce curves. If she can document this, maybe someone should write this up as a case study.

    I'll also not we have a few folks here who wore Milwaukees and were compliant who still needed surgery. It's a moving target and we should never imply noncompliance ever results in surgery. Just can't know that.
    She said she had a thoracic curve of 42 degrees and a lumbar curve of 30 degrees before being braced. She’s originally from New York and was under the care of a Dr. Kiem (I think his name has been mentioned here) at Columbia-Presbyterian. I don’t know how often she has had radiographs taken, but she has no indicators of progression such as height loss or clothing not fitting the way it used to. She’s a tall woman of 5’9” and says that’s where she was at out of her brace.

  9. #24
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    Hi Concerned Dad,

    All that tells us, though, is what we know already about medical research. It really, really su**s. (And, yes, that is my professional opinion ) The literature on surgical methods is far worse, in my limited experience - it's not only not controlled, but also largely anecdotal.

    Medicine really is not ruled by research. It's much more of an art then a science. Maybe it shouldn't be that way, but that's the way it is. Given that, the very best we can do is find a Dr we trust and get the benefit of all of their non-published, non-scientific anecdotal experience. As someone who had read and done medical research, I would be far more comfortable with a Dr. who had paid attention to the experience of their patients for 20 years then one who had read all of the literature. (Although, frankly, I'd be pretty suspicious of someone who wasn't interested enough in their specialty to read the research, flawed as it is.)

    What I think the literature *is* good for is to give all of us lay people enough knowledge to figure out what questions to ask in order to find a doctor to trust for all of our medical scoliosis needs (surgery, bracing, pain relief, etc.) And it's great for giving us leads in all those areas that doctors don't handle very well (exercise, diets, etc.) But I don't think that medical research is every going to shine a very bright light on these areas.
    Last edited by hdugger; 10-20-2009 at 05:12 PM.

  10. #25
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    Quote Originally Posted by Pooka1 View Post
    Two points...
    I counted 3

    Heck, that Spinecor article you posted had a kid reduce her curve by 11* just standing in a rakish manner.
    I think you are interpreting that 11 degree thing wrong. That portion of the paper was discussing the "corrective movement" that the brace was attempting to acheive.

    The last and most important parts of the brace are the corrective bands. The bands are attached between the Pelvic Base and the Bolero while the patient is in their corrective movement and they are sequenced in order from 1-4 to cause the body to be held in the corrective movement. Some of the bands will have high tension on them and others will have virtually no tension....

    It is part of the procedure to fit the brace. Although, I have to say, it was never discussed once that I recall during our two trips to Montreal. But, they did have my daughter stand funny when they first fit the brace to her.
    Geez, I'd just as soon forget that whole thing.

  11. #26
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    Wow, you must glow in the dark!

    Quote Originally Posted by tonibunny View Post
    I don't know how useful this information is, but it's interesting. This is my curve progression since I was first diagnosed as a 6 month old baby in 1976.

    I was immediately put into a Minerva plaster cast, and then a couple of years later I started to have EDF casts - exactly the same sort that are used for serial casting today, but I was too old for them to be able to provide any correction. I also wore Milwaukee braces from the age of about 3 - I'd tend to wear the casts in the winter and braces in the summer, possibly because of the heat. Starting out with this size of idiopathic curvature as a baby, I am convinced that without the braces and casts my curves would not have stayed in place as long as they did.

    1976 1st July: Upper Curve 62, Lower Curve 32

    1977 26th Aug: Upper Curve 62, Lower Curve 45

    1978 16th May: Upper Curve 63, Lower Curve ?

    1979 29th Jan: Upper Curve 63, Lower Curve 55

    1981 Jan 15th: Upper Curve 62, Lower Curve 55
    Not seen for a year.
    Would need fusion at age of 9 or 10.

    1983 Feb 14th: Upper Curve 62, Lower Curve 53

    1983 Nov 11th: Upper Curve 64, Lower Curve 50
    Shows deterioration

    1984 Mar 30th: Upper Curve 61, Lower Curve 55
    Curves deteriorating
    Will need surgery sooner rather than later

    1985 Oct 18th: Upper Curve 70, Lower Curve 59
    Clearly needs surgery
    I had my first set of operations at the RNOH in Stanmore in January 1986. I had a discetomy and anterior release on the 13th of Jan, followed by two weeks in halo-tibial traction, and then a Harrington Rod insertion and fusion from T1 - T12 on the 28th January. When I woke up, the first thing I heard was a nurse telling her colleague that "that space shuttle has just blown up" - it was the day of the Challenger disaster.

    My curves were 75 degrees (thoracic) and 55 degrees (lumbar) immediately before this surgery, and 35 degrees (thoracic) and 41 degrees (lumbar) afterwards.

    Following this surgery I wore a cast for 6 months to protect the fusion, and then a TLSO brace for another 6 months, but did not wear a brace at all after that; I was simply monitored to keep an eye on the lumbar curve. My upper curve settled down at around 45 degrees.

    1987 Aug 21st: Upper Curve 45, Lower Curve 38
    Rib prominence reduced to 20 degrees

    1988 Feb 19th: Upper Curve 46, Lower Curve 40
    Rib prominence now at 27 degrees

    1990 Feb 21st: Upper Curve 45, Lower Curve 46

    1992 Jan 10th: Upper Curve 45, Lower Curve 58
    Rib prominence 29 degrees

    I had my lumbar curve fused in 1994, and it went up to 70 degrees by the time of that surgery. That lumbar curve, which had mainly stayed put with bracing before I was ten, progressed during my adolescence when I wasn't wearing a brace.

    Obviously nothing can be proven with this information but it is interesting I think Based on this, and despite having worn a Milwaukee and casts for the first ten years of my life, if I had a child with scoliosis I wouldn't hesitate to brace them.

  12. #27
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    This is an excellent thread. I thought I'd add a few comments.

    1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.

    2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.

    3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.

    Regards,
    Linda

  13. #28
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    Quote Originally Posted by LindaRacine View Post
    This is an excellent thread. I thought I'd add a few comments.

    1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.
    Yes as Dolan pointed out, we are in an uncanny situation where there is no real evidence for a treatment that is considered the standard of care. I don't think some people grasp the strangeness of that.

    2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.
    I was not aware bracing advocates ever claim a brace permanently reduces a curve. I thought the claim was that it hopes to not let it get larger and that after you remove the brace for a minimum amount of time (days) the curve will return at least to where it was when you started bracing. That's why I think this case if she can document it, is unusual.

    3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.
    Yes they felt it worked on the basis of uncontrolled and poorly controlled studies. They may have incorrectly thought they had evidence also. I can make anything appear to work in any number of uncontrolled and poorly controlled studies. There is a reason you can't publish uncontrolled studies in other fields of science.

    And I stated that Nachemson and Peterson inadvertently stacked the patients. We have no evidence that there was any subterfuge or anyone with a preconceived idea for the results so nobody should be accusing folks. The surgeons and researchers are the good guys in the scoliosis game and represent the only hope of ever solving this problem through well-designed science.
    Last edited by Pooka1; 10-21-2009 at 12:25 PM. Reason: clarity
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
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    Quote Originally Posted by LindaRacine View Post
    This is an excellent thread. I thought I'd add a few comments.

    1) I asked at least a dozen surgeons at the SRS meeting, if they felt bracing worked. They all admitted that they tell their patients that bracing may or may not be effective, but at the moment, they're still recommending that kids who meet the criteria be braced.

    2) I know at least a dozen people who wore braces as kids, and who have not had to have any additional treatment. These are all kids whom I met from running a support group in the 90's, so most of the kids are in their 20's or 30's. I don't have their medical records, but since they went to specialists that I know, I can almost guarantee that their curves would have been in the 25-40 degree range when they started treatment. All of those kids may not have advanced without treatment, or they may go on to need treatment, but there are plenty of people out there like the one mentioned by Chris.

    3) Since they felt brace treatment worked, I suspect that specialists must have thought that creating a control cohort was unethical. I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.

    Regards,
    Linda
    Thank you for that great information Linda!

    I wonder if it would be possible for the SRS to list the bracing beliefs of each surgeon they have on their Find a Doctor list. Their true beliefs, not their go-through-the-motions beliefs. I think a great part of this bracing problem could be solved by getting the correct patients and their beliefs to the correct doctors who have similar beliefs. This would be tremendously helpful to the parents and patients trying to find an appropriate doctor.

    For instance, I took my daughter for a second opinion to a highly-regarded surgeon, you'd recognize his name easily. I would at this point still take my daughter back to him IF she needed surgery. I'm sure his surgical skills are phenomal...and he's a nice doc. HOWEVER, my daughter was in a night-time brace and I was asking him that since many studies show the TLSO braces to be more effective than the brace she was currently wearing, wouldn't it be better for her to be in the TLSO.....and what did he do but turn around to my daughter, look her in the eyes, and plaintively say to her, Oh, you wouldn't want to wear a brace all day, would you? (And yet, that is the brace he prescribes). My jaw dropped in astonishment.

    Thanks to this doctor, my daughter would never again think it was okay to wear a brace full-time. She went in to his office with no problems with it, and came out and she wouldn't even consider going to Luke Stikeleather to be evaluated for a Cheneau brace. Thanks for the support Doc!

    I later found out that this surgeon doesn't believe in bracing (through his physician's assistant), and I suggest that he has created his own reinforcing belief. He commiserates with the patient, (Oh, you poor baby fluffy bunny, what is bad old mommy trying to do to you?), the parent gets no support from the surgeon who is supposed to be the one to help support the parent in bracing, and the child will never wear the brace that he has prescribed to them. And that certainly appeared to be the case in his waiting room.

    Even with the research that CD is recommending that parents do before going to an orthopedist, they wouldn't find that type of belief information. And it's a disservice to find out these beliefs after the fact when your child has already been swayed into believing that bracing is the most hideous thing possible.

    I was lucky to find a doctor for her second brace that was actually finding success with nighttime bracing through my daughter's orthotist who I new from her original brace, however, I would have rather given my daughter a shot at having a reduced curve from the Cheneau brace. I think she would have been ultimately happy about that.....but due to that surgeon we visited, it was out of the question. And it makes me angry to this day.

  15. #30
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    Pooka,

    The Soviet Union collapsed from the weight of its horrible policies. May it stay dead forever and not resurrected here. The communist countries destroyed countless lives through their belief that they could do anything to anybody and not worry about the destruction of others. Think of just the East German women's swim team and how the communist doctors absolutely destroyed those women's lives... do not even try to resurrect that here. You'll have a fight on your hands.

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