Changes in scoliosis treatment due to Scoliscore

[flerc]

Are they permanent improvements? You can improve a curve over 10* by just standing differently.

If you think that non surgical professionals are so ignorant that doesn’t know that or are dishonest trying to deceive people with such kind of tricks, it has no sense to..

Has a single person avoided surgery over an entire lifetime due to a conservative or alternative treatment?

..answer that. But anyway is ridiculous to expect evidence over an entire lifetime, from methods borned only some few decades ago. It would be the same that expect such kind of evidence proving that last fusion techniques are really better than previous.

These are the relevant questions. Vague comments like "improve" or "work" are not helpful unless you specify exactly what you are talking about. Most if not all people are looking for something that helps them avoid surgery that is needed for pain, progression or both. But that is NOT what is being addressed when some folks talk about a treatment "working."

Of course I was meaning in all this thread that ‘work’ means avoid a surgery. I also have showed in this thread what is an important improvement for me.
Anyway we may define it, as surely I did before but maybe not in this thread. A real reduction of at least 15% or 20% is a significant improvement for me. May be not enough for avoid surgery in much cases, but without any doubt, it proves that theory behind the method have much to do with the scoliosis problem. May be not enough to solve it, but surely it should to be taken into account to achieve the ‘perfect’ solution, that medical community have not interest in looking for.
Other metrics for stopping progression or reduction of pain or other complications, are more difficult to define.

For some, "working" means making them money and not helping the patient.

If you think in that terms, you may also think that for some, "working" means making them money and not helping actually the patient or helping it with a centennial and bad solution, knowing that a good solution may be achieved.

[flerc]

Great point. And it is important to remember that when someone questions the use of an alternative treatment method whose effectiveness has not been proven, it is not because we want to see everyone have surgery - it is because we don't want to see a patient or parent, often desparate to help themselves/their child, believe what those touting these methods are saying, without proof, and pay money for something that doesn't work.

Its really hard to believe it.
As I said before in this thread, the worst is not that some dishonest people may be doing money with something that cannot work. The worst is that fusion is a bad solution, and really an unacceptable solution at least in much cases and nobody may say it’s not enough clear that a better solution may be achieved and medical community is not looking for it. That is the problem of much people and not only parents.
If that people touting that only surgeons may help, would be realy worry for that people, they should to realize that and stop to saying: Hey, you have not hope, you must to be sure that non surgical methods not work.. as surgeons say to much patients.
That people could really help if they want and of course is not repeating what surgeons says the way. They may help surgeons in that way but not to us.

And, unfortunately, there are always people out there just looking to make a buck.

If you think in that terms, you may also think that for some, "working" means making them money and not helping actually the patient or helping it with a centennial and bad solution, knowing that a good solution may be achieved.

[flerc]

That is an ad hom fueled by bitterness over the fact that no conservative treatment can match surgery for stopping progression and reducing curves.

Surgeons are the only game in town, like it or not. They are the good guys.

You not stop going back in this discussion
Now low blow again. We may do the same if we want.. don' t make me fall so low.. you can make your work in this forum in other way.

[flerc]

You not stop going back in this discussion
Now low blow again. We may do the same if we want.. don' t make me fall so low.. you can make your work in this forum in other way.

Or now is the only way that you can do it?

[CAmomof2]

Here's our evidence - Daughter treated with SpineCor, now being scheduled for surgery.

[mariaf]

"And, unfortunately, there are always people out there just looking to make a buck. "

Which is pretty much what I'd say about the surgeons.

I guess I don't think in those terms (about surgeons) because my son's surgery was performed at a Shriners Hospital and they didn't make a penny from it, rather it cost them tens if not hundreds of thousands of dollars to perform it.

I realize, however, that you are talking about surgeons in general. As Sharon has already pointed out, while surgeons are, understandably, paid for their services, at least surgery has been shown to permanently correct curves. In addition, many of the top surgeons have more business than they can handle and waiting lists a mile long - so I'm skeptical that those guys would recommend surgery if someone didn't need it just to make a buck.

[mariaf]

the worst is not that some dishonest people may be doing money with something that cannot work.

Really? Even if what they are doing is keeping the person from seeking proper treatment and hurting them in the long run?

Sorry, I guess we will have to agree to disagree on this one because I have a big problem with someone taking advantage of a vulnerable, desparate parent or patient, for their own finanicial gain, with no regard to what is in the best interest of the patient.

Call me crazy.

[mariaf]

Here's our evidence - Daughter treated with SpineCor, now being scheduled for surgery.

CAmomof2,

I am so sorry to hear this and my heard goes out to you. Your daughter's story is EXACTLY why I am not a fan of SpineCor. Specifically, in reading your signature, it corresponds with something I posted earlier (in this thread I believe) that people need to get OUT OF BRACE x-rays and not listen to the folks at St. Justine's and elsewhere insisting that only in brace x-rays are needed. Most doctors will tell you that in order to get an accruate read on the curve, the brace (ANY brace) must be off for at least 24-48 hours.

I am NOT blaming parents, not at all - we trust those who are supposed to be the experts - I've done it many times, said to myself "well he/she must know, they are the doctor".

I am just tired of seeing this scenario play out over and over again. I personally know of several other patients who had eerily similar experiences to yours with SpineCor.

Best of luck to you and your daughter - the good news is that for the most part, these kids bounce back quickly from surgery.

[flerc]

Really? Even if what they are doing is keeping the person from seeking proper treatment and hurting them in the long run?

Sorry, I guess we will have to agree to disagree on this one because I have a big problem with someone taking advantage of a vulnerable, desparate parent or patient, for their own finanicial gain, with no regard to what is in the best interest of the patient.

Call me crazy.

You are touting that only surgeons may help, even when you know that they are not much effective to stop a curve, and fusion is then the only one solution they have and you know what kind of solution is it. You was lucky that your case was different and they used VBA with your son and it worked (good notice for me), but you are not touting to use VBS, you are touting to do what surgeon say and that professionals working with non surgical methods are dishonest or ignorants, then you are touting for fusion as the only one option when rigid braces or somethhing like VBS don’t work or cannot be used and that no attemp to avoid it should to be done. So is difficult to understand your good intentions. If you really have its, at least you’ll stop to say that there is no hope in that cases to have the lucky that you had.

[Pooka1]

The issue of surgery, with all its downsides, being the only treatment that has been proven to permanently stop progression and reduce curves has NOTHING, NADA to do with what is going on in the minds of conservative and alternative treatment purveyors. They are free to do whatever they like WITHOUT reference to surgery if they have no training in it.

Either a conservative treatment can or cannot stop progression.

Either an alternative treatment can or cannot permanently reduce a curve.

Those questions exist COMPLETELY APART from whatever the deal is with surgery. The two things are NOT linked. I don't know how to make this any clearer. It is WRONG to link them in any way. It's like linking the sedimentology of the beach in Cancun to vulcanism in the southern Andes. There is no functional connection.

Some feel that solely due to the downsides of fusion that there, per force, MUST BE a conservative or alternative treatment that must eventually work. That is linking the two things and you can't do that. The world and reality do NOT hold any guarantee that just because fusion is not ideal that there will ever be an effective conservation treatment. Reality does seem to indicate there will never be an effective alternative treatment because those guys are Keystone cops. Just my opinion.

[Pooka1]

at least you’ll stop to say that there is no hope in that cases to have the lucky that you had.

What Maria or I or anyone says about the hope for a non-fusion treatment is entirely IRRELEVANT to whether or not there will ever be one developed. The controls on that are biology, anatomy, physics, biochemistry, etc. coupled with the cleverness of the researchers. FULL STOP.

You are trying to link apples and oranges where there is absolutely no connection.

If any of the present set of non-surgical treatments worked then we would know about it and there would be no surgery. But we don't see that. Of course you have already acknowledged that no treatment works for everyone. But the actual question is does any non-surgical treatment work for anyone? That is STILL an open question after all this time. That does not bode well.

[flerc]

Either a conservative treatment can or cannot stop progression.

Either an alternative treatment can or cannot permanently reduce a curve.

Those questions exist COMPLETELY APART from whatever the deal is with surgery. The two things are NOT linked. I don't know how to make this any clearer. It is WRONG to link them in any way. It's like linking the sedimentology of the beach in Cancun to vulcanism in the southern Andes. There is no functional connection.

Who said something against that extremely obvious fact? You should to quote.. and also realize that not necessary all people thinking different as you think are stupid, ignorant or have her mind clouded because despair.

Some feel that solely due to the downsides of fusion that there, per force, MUST BE a conservative or alternative treatment that must eventually work. That is linking the two things and you can't do that. The world and reality do NOT hold any guarantee that just because fusion is not ideal that there will ever be an effective conservation treatment. Reality does seem to indicate there will never be an effective alternative treatment because those guys are Keystone cops. Just my opinion.

Do you really think that that is the reason because people believe that something different of what surgeons says may be true? We have discussed that point before. I must again to copy and paste?

[flerc]

What Maria or I or anyone says about the hope for a non-fusion treatment is entirely IRRELEVANT to whether or not there will ever be one developed. The controls on that are biology, anatomy, physics, biochemistry, etc. coupled with the cleverness of the researchers. FULL STOP.

You are trying to link apples and oranges where there is absolutely no connection.

Of course that (fortunately) what you or Mariaf or other people like you may say about current or possible non surgical methods has nothing to do with their effectiveness. Do you believe that I may be so stupid to not realize that? If I said that was because Mariaf talked about good intentions in touting what you are touting, something of course difficult to believe.

If any of the present set of non-surgical treatments worked then we would know about it and there would be no surgery. But we don't see that.

Do you are saying that if some non surgical method worked sometime in some case you would know that? Do you really beleive that? And anyway, if not works in all case, why would be no fusion?

Of course you have already acknowledged that no treatment works for everyone.

Do you think that I don’t knew always that?

But the actual question is does any non-surgical treatment work for anyone? That is STILL an open question after all this time.

It not seems to be an opened question for you, Mariaf and other people.

[flerc]

According to the most recent research from the Texas Scottish Rites Hospital, severe idiopathic scoliosis is, by nature, a disease of the nervous system rather then the bones. That suggests that, while the history of scoliosis oversight has rested with orthopedic surgeons, the people who will oversee the actual treatment of the root cause of the illness will not be bone doctors.

It also explains, in part, why scoliosis treatment has stalled with a stop gap measure -- the people who are overseeing patients on a day to day basis do not have the necessary training to drill down to or treat the root cause.

This is in no way a diss of orthopedic surgeons, who have done a heroic job with the cards they've been dealt. It's just an acknowledgement that 10 or 20 years in the future, they will likely no longer be overseeing scoliosis patients.

Great post Hudgger!!
I'm continue doing attemps since years ago to talk with a Neurologist and they always refuse saying that they has nothing to do with scoliosis and surgeons are who knows about it.. I hope that in the short time at least they will begin to think in other way.

[flerc]

I should clarify that my son, as a congenital scoliosis patient, is unlikely to benefit from any treatment other then surgery. So, it's to my personal advantage to have medicine focus on nothing but improving fusion techniques for scoliosis patients and everyone else be damned.

It's my duty as a human being, though, to help other parents' children avoid surgery.

Hudgger, you really are a very good person without any doubt. I strongly wish that if your son someday need surgery, at least fusion techniques will reaches the maximun improvement, but mainly that a non fusion surgery will exists not only for little kids as today.