Quackwatch and Schroth

[rohrer01]

How will any change in the curve between standing and laying down ever be relevant to letting a person avoid surgery? We have a person on this group who worked out a lot and she had two large NON-structural curves. She STILL needed surgery if only to hope to save her lumbar.

What EXACTLY is the relevance of whether a curve changes upon laying down to avoiding surgery for life? Is there any logical progression of thought on that by trained people? Where?

Wouldn't that be considered hysterical scoliosis if they were BOTH non-structural? It sounds like this girl/woman has some sort of connective tissue disorder to me. I don't know how you could non-surgically address the tendons and ligaments around the spine that hold it in place. It's not a matter of strengthening muscle, which I don't know how that could be improved around the spine, either. If your ligaments around your spine are like rubber bands, you're pretty much sunk. =(

Whatever combination of things I have, I exhibit both hyper-flexibility(suggested Ehler's Danlos) AND extreme muscle spasms and hardening (dystonia/myotonia). They are in different places in my body. My skin is pretty much stretchy. I have no stretch marks after three children. Most of the muscle hardening is in the neck, shoulders and upper back, right where my nasty curve is.

[mariaf]

My DIL is not opposed to exercise for scoliosis. But she knows there are limitations.

I think most reasonable people would agree with her.

[mariaf]

As for fusionless surgery, I am very curious about that. Would it enable the patient to still retain all flexibility he/she had before and not have to get rods and screws implanted onto their spine?

Yes, these procedures allow patients to retain complete flexibility.

And yes, if the procedure is successful, patients can then avoid rods/screws/fusion. The good thing is that doctors are learning more and more who the best candidates are for both VBS and tethering so that the vast majority of these surgeries have an excellent chance for success (if the doctors don't think the procedure has a good chance for success, they will not put a patient through surgery). As I stated above, you need to have a decent amount of growth remaining for either VBS or VBT (tethering).

Hope this info is helpful.

[rohrer01]

If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.

Do you see how much impossible is to talk with Pooka1 saying what she use to say?. I did a big effort to say this instead to reply her what she deserves.

I am absolutely SURE that my curve will not move. If I stand in a way to try to straighten the more flexible one I look HIGHLY deformed and it is harder to breathe.

You asked me to stay out of it between Pooka1 and you. Please, don't drag me into it by asking me my opinion. I try to be friendly to EVERYONE here.

[mariaf]

Oh, and fusionless surgery is only available for growing kids so far. It's based on the premise that as the spine grows it straightens out (tethering). I'm not sure about the long term outcomes of VBS because I'm not convinced that the staples won't get metal fatigue and break. Mariaf would know WAY more about that than I do. I think she has a kid who is stapled. Those questions would be good to ask her.

Hi Rohrer,

Your understanding of fusionless surgeries is right on the money. VBS and tethering require that a decent amount of growth remains. In fact, the size of one's curve is usually not the reason that someone is not accepted for tethering, but rather lack of growth remaining. I am hearing of curves in the 50's and even a few in the 60's that were tethering and have achieved excellent results so far. Of course, we have to wait and see, but some parents/patients with larger curves are willing to take a shot at tethering to try to avoid fusion. It's a very personal decision, but for what it's worth, definitely one I think I would take.

As for the staples getting metal fatigue and breaking, the doctors I spoke with don't seem concerned. While VBS has only been in existence 12 or 13 years, this hasn't happened so far, and my understanding is that even in the unlikely event that a staple cracked down the road, both ends would be so solidly in the bone that it wouldn't be an issue. I think that initially, the plan was to perhaps remove the staples at the end of growth. But they have not caused any problems, so the doctors decided to leave them in.

No treatment method is perfect, but treating scoliosis seems to often be about choosing the lesser of the evils.

p.s. Thanks for the kind words. You 'get' why I stick around and put up with all of this nonsense (which I becoming much better at ignoring). I simply want folks to be aware that all of these options exist - period. I don't want them to have to find out about them by accident like I did - or worse, not find out at all. I am very happy to hear that I accomplished my goal in your case. I hope your future grandkids don't have to deal with scoliosis, but if they do, at least you will know what all of your options are.

[Pooka1]

surely you are receiving something in return of course.

This is objectively delusional.

[flerc]

I have not to answer none of your questions since you didn't replied me.. how many times? I'm not here to prove absolutely nothing about myself and I'm not doing none kind of hidden work here as you do since years ago. I elaborated a complete reasoning thinking in the Rohrer case, a logic reasoning based over some assumptions. Every reasoning is based over assumptions, did you know that? I don't know if those assumptions are right or not, probably not. I was talking with Rohrer about this, her problem, not with you, who are not in this section in order to solve a serious health problem, right? And certainly I have nothing to talk with a bad person as I think you are. And certainly it's making me very angry to see I'm almost the only one here saying to you what everybody should to be also saying you. I'm wasting my time here.. sure is not your case.. surely you are receiving something in return of course.

[Pooka1]

Logical?

Case A: The curve does NOT decrease upon laying down. This means EXACTLY WHAT in terms of EXACTLY WHAT?

Case B: The curve DOES decrease upon laying down. This means EXACTLY WHAT in terms of EXACTLY WHAT?

Does any of it map to having to have surgery or avoiding surgery? If not WHO CARES??????????? Are you just typing to type?

[flerc]

SO WHAT if ANY curve is reduced upon laying down? Are you telling her to lay down the rest of her life? It's just going to curve again when she stands.

There are people who have VERY flexible curves and it didn't save them from surgery.

What are you talking about?????????????? Can you state it in logical clear terms? Is the goal to avoid surgery?

Logical? You have not idea what logics is. I'm still waiting your explanations about all the absurds you said in many previous threads. Only surgery works for you, at least is what you say, so WHAT THE HELL ARE YOU DOING HERE, MAY YOU EXPLAIN ME? GO TO SURGICAL SECTIONS IF YOU WANT TO PROMOTE SURGERY AND LEAVE PEOPLE FREE TO TALK ABOUT NON SURGICAL ISSUES. WE ARE HERE BECAUSE WE HAVE A SERIOUS HEALTH PROBLEM, DO YOU UNDERSTAND? WHAT KIND OF SINISTER PERSON ARE YOU?

This forum should to be shut down!

[Pooka1]

If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.

SO WHAT if ANY curve is reduced upon laying down? Are you telling her to lay down the rest of her life? It's just going to curve again when she stands.

There are people who have VERY flexible curves and it didn't save them from surgery.

What are you talking about?????????????? Can you state it in logical clear terms? Is the goal to avoid surgery?

[flerc]

I guess the relativity of it would be that it is a super stiff curve. Flerc has mentioned in his other threads about the difference in curve magnitude laying and standing. I suppose if it were not so stiff it might be easier to work with, no matter the method. Unfortunately, it is in an area that can't be reached by ANY exercise that I've ever seen. I wish it were. Even from a surgical perspective, I think my curve would be a nightmare to work on.

If you would have enough flexibility, the other curves should to be reduced being lying down. Who knows if the upper curve would also be reduced. Changes in some curve may provokes changes in others. I would try to be absolutely sure about this point.

Do you see how much impossible is to talk with Pooka1 saying what she use to say?. I did a big effort to say this instead to reply her what she deserves.

[Pooka1]

It not surprise me you think that.

How will any change in the curve between standing and laying down ever be relevant to letting a person avoid surgery? We have a person on this group who worked out a lot and she had two large NON-structural curves. She STILL needed surgery if only to hope to save her lumbar.

What EXACTLY is the relevance of whether a curve changes upon laying down to avoiding surgery for life? Is there any logical progression of thought on that by trained people? Where?

Or is it just a thought by a random lay person (you) that it might matter?

[flerc]

That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.

It not surprise me you think that.

[rohrer01]

That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.

I guess the relativity of it would be that it is a super stiff curve. Flerc has mentioned in his other threads about the difference in curve magnitude laying and standing. I suppose if it were not so stiff it might be easier to work with, no matter the method. Unfortunately, it is in an area that can't be reached by ANY exercise that I've ever seen. I wish it were. Even from a surgical perspective, I think my curve would be a nightmare to work on.

I was talking to my sister about my latest developments with the dystonia that I have (you can read about them on my thread "I have some imaging CD's"). Having surgery is probably out of the question for me. Once those muscles would be cut away to expose the spine, I think they would harden into a ball that the surgeon may not be able to loosen enough to reattach them. That thought never occurred to me until recently. It's a scary thought to think there are no options left. There just aren't for me. =( I'm doing all I can already. My pain levels have suddenly quadrupled without any real explanation except the progression of my muscle diseases. I'll be talking to the neurologist and my PCP this week. Maybe I'll get some answers from the neurologist.

[Pooka1]

My curve is measure within the margin of error both lying down and standing up. I've had both kinds of x-rays done and the curve magnitude of the upper curve at least doesn't change.

That's interesting but what would it matter even if it did change when laying down? The question is irrelevant to anything relevant.