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View Full Version : Dr. Hey has seen "countless cases" of progression in "stable" scoliosis



Pooka1
08-31-2012, 05:01 PM
http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html (http://http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html)


I shared with him that the curve could remain stable, but due to the asymmetric loading of his lower lumbar discs, that there was a possibility that the lower curve could collapse, and lead to a painful degenerative scoliosis that could even result in spinal stenosis. I've seen countless cases of patients in their late 20's, 30's, 40's, 50's, 60's and beyond who were told their curve was "stable" and they were "done growing" as a teenager finishing off treatment for adolescent scoliosis, only to find out a few or many years later that the curve had begun to progress again. Logan is extremely bright, and seemed to get the long-term choice he faced, given the possibility of realigning his spine now when he is younger, and possibly be able to save the bottom 2 or 3 discs for a lifetime, while also enjoying a better posture.

This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything <30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

This paradigm seems to need revisiting.

Pooka1
08-31-2012, 06:14 PM
None of this is science because the only person in this sandbox who has worked in this field is Dr. McIntire.

These are lay observations as is everything that anyone here writes except Dr. Mcintire BY DEFINITION.

Dr. Hey's observations in that post do NOT seem to comport with the paradigm. We can't know if it actually does not comport because this isn't our field.

I notice you are reading my posts after claiming over and over that you don't read them and suggesting to "countless" others to ignore me. Does that comport with honesty?

Pooka1
08-31-2012, 06:21 PM
By the way, Dr. Hey's observation comports with the studies about when bracing is done and which angle is generally protective. Unless you are left with a curve <30* after bracing which I am guesstimating is hardly every the case given the bracing treatment window, it isn't generally protective against progression.

jrnyc
08-31-2012, 09:47 PM
i personally do not believe any of the guidelines...
my curves were definitely below 30 at maturity...
made no difference to progression....
i dont buy the guidelines....at all...
i think there are probably many factors that can
have an effect on progression once curves are there....
i doubt medical science knows all of them or understands
most of them....

jess

rohrer01
09-01-2012, 02:27 AM
I understand how statistics work and can see both sides of this. I would be interested in hearing about more surgeon's opinions than just Dr. Hey's. He is very selective of who he chooses to be his patients, so that skews his data tremendously.

I personally have two curves one >30 and one <30 at maturity. BOTH curves have progressed in adulthood. I realize that I am an "outlier", but there are probably more like me that just don't go to the doctor and never find out OR are not reported for whatever reason.

I would bet that each doc has their own take on things. Pushing for earlier fusions has pros and cons as does any other treatment meant to avoid or postpone surgery.

Pooka1
09-01-2012, 11:27 AM
The interesting question for me from all this was why is the bracing window 25* to 40*? Why 40* at the top end? I don't know but I think it might have to do with the thought that curve below 40* at maturity would not likely become surgical. But in fact this bracing window ending at 40* is subject to the identical criticism as Scoliscore in that low risk entails being below 40* at maturity.

If 30* is generally protective against progression to surgical range then the bracing window probably should be 25* to 30*.

Now it is suggested that most braced kids are braced needlessly. But that has been determined at point of maturity as far as I know. To the extent that most braced kids are between 30* and 40*, and if Dr. Hey's observations do suggest something, then these kids might eventually go on to progress.

I'd like to see long term on people, braced or unbraced in the 30* to 40* range. It seems like Dr. Hey might suggest this group progresses more than previously thought which should ramify to the brace treatment window question as per that comment. It may not be brace or surgery for most kids. It may be brace and surgery for many even among the "successfully" braced.

There is still so little known in this field and that fact should be conveyed to parents and kids. Bracing is HIGHLY experimental.

rohrer01
09-03-2012, 03:36 PM
All methods of treating scoliosis are highly experimental. Looking over the course of history, we can see a lot of damage done, even deaths, from surgery. I don't know how many deaths can be attributed to bracing. There are also deaths attributed to no treatment. So here we are. There is NO CURE for this dreadful disease. Yes, we have to weigh out what is best for each patient so agree with Hdugger on that point. If the person isn't in pain, or horribly disfigured, or have their life in jeapardy, they surgery should be postponed. Better technology is coming out all the time.

I personally agree with you, Sharon, about the bracing range of 25*-40* not making any sense. There is NO protective range for nonprogression as far as I'm concerned. My compensatory curve USED to be in the teens and is now over 40* if I would go by Dr. Hey's or Dr. Tribus' measuring techniques. My smaller curve seems to be driving the larger one, ironically. I don't think that there are any "normal" cases. If bracing is to be used to try to "prevent" surgery, then they need to start bracing very early and change the criteria to 10*-25*. The 25*-40* could be used to "postpone" surgery. And those of us with 40*-50* curves just have to sit it out and wait. Personally, though, if the criteria were changed to the above suggestion, WAY too many kids would be braced unneccesarily, as if that isn't already happening. Kids like my son, who self corrected, would be braced and called a "success".

The point of my post is to say there are no easy solutions or "right" answers. I think that kids that are braced SHOULD be told that they may still need surgery on down the road. It's only fair.

Pooka1
09-03-2012, 04:23 PM
All methods of treating scoliosis are highly experimental.

That fact is completely obscured by it being a standard of care in a certain curve range. This situation is beyond uncanny. It is surreal. Bracing is still so experimental that a completely non-braced control group is going on as I type. Ask me if I think there is a single parent or child facing bracing who is ever told that. If they were told the truth, I predict there would be A LOT less bracing, compliance, etc. Parents know this. Some see the fact that bracing hasn't been disproven as justification for not laying out the straight dope. I think that decision should be left to each kid/parent.


I personally agree with you, Sharon, about the bracing range of 25*-40* not making any sense. There is NO protective range for nonprogression as far as I'm concerned. My compensatory curve USED to be in the teens and is now over 40* if I would go by Dr. Hey's or Dr. Tribus' measuring techniques. My smaller curve seems to be driving the larger one, ironically. I don't think that there are any "normal" cases. If bracing is to be used to try to "prevent" surgery, then they need to start bracing very early and change the criteria to 10*-25*. The 25*-40* could be used to "postpone" surgery. And those of us with 40*-50* curves just have to sit it out and wait. Personally, though, if the criteria were changed to the above suggestion, WAY too many kids would be braced unnecessarily, as if that isn't already happening. Kids like my son, who self corrected, would be braced and called a "success".

Well scoliosis appears to be so variable that it is probably technically true that no angle is protective. I mean we have people with straight spines developing adult onset scoliosis. We have testimonials with surgeons telling patients that it isn't unusual that a curve in the lower 30*s at maturity would progress to surgical range in a young adult. Those observations comport with your suggestion that there is no protective angle. There is probably a trend in that the lower the angle at maturity the less likely is progression to surgical range. But I bet that trend is almost completely obscured by the variability. I think if anyone gathered the data, it would be breath-takingly jaw-dropping if the R2 was above 0.2. Or even above 0.1. Thus it is virtually impossible to predict in any given case. And we still don't know if bracing only delays rather than avoid surgery in any case. Kids/parents need to be told that directly.

I agree restricting the bracing window to lower angles will raise the already sky-high unnecessary treatment rate, perhaps to near 100%. But anything about some high percentage will be vary hard to separate from natural history which is up there also. It will never be shown in my opinion.


The point of my post is to say there are no easy solutions or "right" answers. I think that kids that are braced SHOULD be told that they may still need surgery on down the road. It's only fair.

Kids/parents being told the straight dope is also my point.

jrnyc
09-03-2012, 09:01 PM
statistics don't mean crap...pardon the expression...when
it happens to YOU...
the probability, the liklihood, etc etc doesn't mean a hill
of beans when YOU are the one the condition or the disease
happens to....
i had to study statistics in school for various Masters degrees...
bored me then, bores me now....

the fact that i was in a group of people who were less
likely to have their curves progress is meaningless to me...
the same way that my dog was not "supposed" to have
the medical problem he had...but he DID...
and i always question statistics...how big a group was studied,
how long ago was the study done, who conducted the study, etc....

jess

Pooka1
09-03-2012, 09:17 PM
statistics don't mean crap...pardon the expression...when
it happens to YOU...
the probability, the liklihood, etc etc doesn't mean a hill
of beans when YOU are the one the condition or the disease
happens to....
i had to study statistics in school for various Masters degrees...
bored me then, bores me now....

the fact that i was in a group of people who were less
likely to have their curves progress is meaningless to me...
the same way that my dog was not "supposed" to have
the medical problem he had...but he DID...
and i always question statistics...how big a group was studied,
how long ago was the study done, who conducted the study, etc....

jess

You are right about these studies probably being very underpowered. The other issue is the huge variability which makes it "not unusual" for a person like you who is not thought to progress to progress. I don't blame you for being skeptical.

The surgical studies tend to have way larger groups than these other studies opining about progression or brace treatment and that will propagate to the out years. And due to the nature of surgery, it is just more easily nailed down than general progression or bracing efficacy.

Surgery for many adults is a choice. It is not really a choice for kids because surgery is not done in a vacuum. While there seems to be near universal (I have seen one surgeon claim it isn't necessary) agreement that fusing kids is better than not fusing them, you do not see that level of agreement about bracing. Bracing is clearly a choice because it is clearly experimental with little learned in the decades of study. In contrast, much has been learned about surgical approaches in that same time. Surgical approaches and instrumentation have advanced but bracing has not. You could even say it has taken a step back with Spinecor. And we do have some longer term data (at least two decades) indicating surgery on kids was the right choice. I don't know about the level of agreement about progression in general.. I wish I knew but I can say the testimonials seem to diverge from some of the paradigms.

So the continual conflating of discussions in this thread and others about conservative treatments with surgery is a complete non-sequitor. Also conflating surgery for adults with surgery on kids is misleading in the extreme... the outcomes are known to differ in may regards.

rohrer01
09-05-2012, 05:07 PM
Likewise, what happens to the individual is meaningless to statistics.

This is not true. What happens to the individual is where we get our data sets. As for the other way around, it is true that statistics is meaningless for the individual IF they are in the outlier range. The problem is, no one knows where they fall in the data set. Therefore, making use of the statistics, as hdugger mentioned, before a decision is made is really all an individual has to go on.

As far as avoiding surgery for teens...??? The only "good" thing I see in that is that there "may" be better technology later on. Surgery is MUCH less dangerous for teens than it is for adults. They heal faster and have generally less pain during recovery. Adult spines are stiff, degenerative, fragile, and the deformities have usually been in place for so long that the ribs and vertebrae resist taking on a new shape. Thus the need for more dangerous procedures such as osteotomies, lamenectomies, costoplasties and the like.

In retrospect, if given the choice, I would have chosen the old Harrington rods for myself at 16. It could have prevented the slew of problems I'm having now and I could've eventually had them removed if need be. I realize that they weren't designed three dimensionally, but I have severe hypokyphosis now, anyway.

The sad thing is my doctors DID predict my future quite accurately. They said my scoliosis would eventually progress and it did. They all said I would eventually need surgery. So knowing this, why did they not act? Putting me in the watch and wait category for the last 27 years hasn't improved MY quality of life any as far as I know.

Taking this into consideration, why would anyone want to put off a surgery for an adolescent KNOWING that they will need surgery eventually? That seems obsurd, unless one is hoping for a miracle cure, which is also absurd.

Maybe I speak in ignorance so would love to be enlightened.

flerc
09-07-2012, 01:57 PM
Hi Rohrer, why are you sure that someone may knows if a surgury will be inevitable?

rohrer01
09-09-2012, 12:49 AM
Hi Rohrer, why are you sure that someone may knows if a surgury will be inevitable?

I'm not so sure of that. Surgery can be avoided by anyone, even the severe cases. It might mean a poorer quality of life for some and a very shortened life span for those whose deformity is very severe. You have to weigh out what quality of life do you want or how long you want to live in severe cases. I'd say that if someone were symptom free with a good quality of life and no threat to life that there would be no reason to rush into a surgery like this. However, kids don't always know what they're up against. If they are having pain as teenagers, you can be sure that they will be in very sore straights as they get older. Why not fuse them young and give them a chance to live a relatively pain free life?

rohrer01
09-09-2012, 12:53 AM
I'm not sure how surgeons are weighing the risk, etc, of surgery for teens vs. adults. I've mentioned in a few times, but our surgeon (who has done a ton of cases) is in no particular hurry to perform surgery on my son. When I asked him, he felt as if the risk were equivalent, although the recovery time was longer in older adults. He did say to get it done before 60, but he didn't seem to be drawing any particular distinction before that.

But, my son is still pretty young, even though he's not a teenager. And his curve is big enough to qualify him for surgery. If surgeons felt strongly that young was always preferable and that there wasn't a downside, I would think they'd be pushing him to have surgery now. He's seen three surgeons - two SRS - with a curve at 50+, and noone has ever suggested that he have surgery.

Clearly, Dr Hey swings the other way, and I'm sure he would have suggested surgery long ago. But noone I've seen ever has. The one time Hart mentioned it was in response to a question from my son asking if he should have it. His response was more or less, "Yes, if you'd like" but he's never brought it up again.

Your son's case is unique because of his deformed vertebra and syrinx. I wouldn't be in a rush to operate on him either if he isn't in a lot of pain. The location of his curve also makes it more dangerous. I totally understand why neither you or your son are in a big hurry to have surgery.

Pooka1
09-09-2012, 07:00 AM
Your son's case is unique because of his deformed vertebra and syrinx. I wouldn't be in a rush to operate on him either if he isn't in a lot of pain. The location of his curve also makes it more dangerous. I totally understand why neither you or your son are in a big hurry to have surgery.

That's a good point. Hdugger's son has congenital scoliosis which is exquisitely rare compared to IS and is a completely different animal in many ways. And her son has a high T curve which is more problematic that the great run of T curves which constitute the great run of curves FULL STOP. Scoliscore is irrelevant to her son. Bracing is probably irrelevant to her son. Apples and oranges squared. Yet she constantly uses her son's case as a "learning point" for IS which is is not.. it is a non-sequitor for IS.

I guess we can't assume we are all talking about IS and have to specify it every time.

titaniumed
09-09-2012, 02:02 PM
I guess we can't assume we are all talking about IS and have to specify it every time.

We know each others cases here, itís the newbies that need to understand this and the difference between particular cases. Apples and Oranges just doesnít cover it! More fruit needs to be added to the basket!

Standard cases or common cases of IS have a certain element of risk. Add other factors and that risk multiplies. All it takes is for one thing to go wrong for the tears to flow.....

There have been quite a few revision threads and posts here lately which is disturbing to hear. Even though many of us come out fine, itís the failed surgeries that really emit a LOUD sound, and surgeons or at least good surgeons hate to hear. We hate to hear.

I have had quite a few doctors and surgeons shake their heads no through the years. If one encounters this reaction, there is no reason to lose hope, I didnít, but I always knew that I would have my day and that the surgeon had to be well trained. We talked about complications. Many complications. But in the end, I was told that it would be a benefit over my current situation at that time which was pretty bad. Alarming levels of constant pain equivalent to line voltage are good reasons for surgery. And I still had to beg.

Surgical intervention needs good reasons....really good reasons. Timing and risk are common denominators. Each very specific on each case.

Curve progression rates are just one problem. After age 40, degeneration becomes a big factor.

Ed

flerc
09-09-2012, 03:08 PM
Rohrer, I believe you cannot be so sure about something so complex, where knowledge about it is so little that simple and basic questions cannot be answer by no one.
What if you would have had surgery when you were a teen and now you would be in pain? What if that pain would the consequence of surgery? What could you do? Would you be so sure about all what you say?


If they are having pain as teenagers, you can be sure that they will be in very sore straights as they get older. Why not fuse them young and give them a chance to live a relatively pain free life?

Why are you so sure? I have heard that an extreme stiff spine may provoke pain. What if the right method to get a flexible spine is done? What if it is the outcome of some strange disease? I know cases when some of those diseases were discovered after surgery. Not always is so clear when is idiopathic and when not.
We would agree in all what you say if it could be known that chances to avoid surgery is 0 or fusion would be a definitive solution and would not be dangerous and so extremely invasive and irreversible (at least since nobody think in reverse it), but of course is not the case.

rohrer01
09-09-2012, 10:53 PM
Rohrer, I believe you cannot be so sure about something so complex, where knowledge about it is so little that simple and basic questions cannot be answer by no one.
What if you would have had surgery when you were a teen and now you would be in pain? What if that pain would the consequence of surgery? What could you do? Would you be so sure about all what you say?



Why are you so sure? I have heard that an extreme stiff spine may provoke pain. What if the right method to get a flexible spine is done? What if it is the outcome of some strange disease? I know cases when some of those diseases were discovered after surgery. Not always is so clear when is idiopathic and when not.
We would agree in all what you say if it could be known that chances to avoid surgery is 0 or fusion would be a definitive solution and would not be dangerous and so extremely invasive and irreversible (at least since nobody think in reverse it), but of course is not the case.

You forgot the "If they are in pain as teenagers" part. I have battled with pain my whole life. I wouldn't wish it on my worst enemy. I don't know what it's like to NOT have back pain. Granted, there were times in my life when the pain was minimal. Now that I'm middle aged, I have to take pills round the clock to maintain my active lifestyle. I'm one of the lucky ones, though. At least meds keep the pain at bay enough that I can still be active, not pain free, but active. What is the trade off here? Is the constant flow of tylenol, oxycodone, baclofen, and klonopin into my body better for me in the long run than a one time surgery (or more if revision is needed)? How do you know that my liver isn't going to fail? Before the drugs I'm on now it was a constant flow of NSAIDS every day from the time I was a teenager until my stomach couldn't hack it anymore. According to my last kidney test, I'm in stage 2 kidney disease.

I realize you are afraid of surgery and making a permanent mistake. To be honest, so am I. I haven't aggressively pursued surgery for myself for that very reason. Once it's done, it's done. But, if it could have saved me a life of pain and drugs I would have had it done in a heartbeat. I don't have that option anymore. My age, the location of my curve and other factors have made any surgical outcome a scary prospect for me. At 16, it would have been a whole different story. I wasn't given the choice. There is NO CURE for scoliosis. EVERY treatment has its drawbacks and unwanted side effects. So, doing nothing also has its consequences and bad side effects, too.

rohrer01
09-09-2012, 11:01 PM
We know each others cases here, itís the newbies that need to understand this and the difference between particular cases. Apples and Oranges just doesnít cover it! More fruit needs to be added to the basket!

Standard cases or common cases of IS have a certain element of risk. Add other factors and that risk multiplies. All it takes is for one thing to go wrong for the tears to flow.....

There have been quite a few revision threads and posts here lately which is disturbing to hear. Even though many of us come out fine, itís the failed surgeries that really emit a LOUD sound, and surgeons or at least good surgeons hate to hear. We hate to hear.

I have had quite a few doctors and surgeons shake their heads no through the years. If one encounters this reaction, there is no reason to lose hope, I didnít, but I always knew that I would have my day and that the surgeon had to be well trained. We talked about complications. Many complications. But in the end, I was told that it would be a benefit over my current situation at that time which was pretty bad. Alarming levels of constant pain equivalent to line voltage are good reasons for surgery. And I still had to beg.

Surgical intervention needs good reasons....really good reasons. Timing and risk are common denominators. Each very specific on each case.

Curve progression rates are just one problem. After age 40, degeneration becomes a big factor.

Ed

Very well said. Let's hope you stay out of the revision category, too. This is one disease that scares the daylights out of me because of all of the weird symptoms and the horrendous "cure" which is no cure. But to people like you, gives quality of life back.

flerc
09-10-2012, 12:05 PM
Rohrer I didn’t forget that part, but I not agree that all teens in pain should to have surgery. Surely the chance to avoid it would be lesser, but we cannot a priori say that could not be any other option in ALL of those cases. Maybe I’m wrong, I cannot be sure of that. Anyway I think that nobody has the enough knowledge to does such kind of categorical claims.
Of course I’m afraid of surgery, but I’m not saying to not do nothing (one of the possible options) or claiming about a particular decision as the best in a general case.

I agree that if you may have again 16, you should to try with surgery, at least after a not long time proving without any change, with something you have never proved before.
But it has not sense to think in the past. You could not see the future and know what would happen then and is logic to be afraid about surgery and not totally clear which could be the right decision.
Anyway, you must to think only in the present and future and of course, you need to stop with pain and reduce the amount of meds. Are you sure that now surgery should be discard as a good option?. What if you get significant improvements in some issues?. It would be impossible to fix only few of the vertebras involved in the curves in your case?

Anyway I believe that probably you are needing the best detox method and to know if something else is provoking your pain. Something as other affection, a nutritional deficit, a genetic or hormonal problem, that even if it could not be reversed, maybe been compensated in some way.. who knows? Even if scoliosis would be the cause of your pain as seems to be, probably it is increased by other factors that may be controlled in some way.

Sorry if it has not sense what I’m saying.. I wish to help you and certainly I believe you should to be ‘disconnected’ for a while. Something as a long vacation, without working or performing any kind of activity not related to solving your problem. I don’t know if there are such kind of centers where you may do something like that.. something as a sleep cure, thermal waters..the best massages, the best diet, right studies, the best rehabilitation therapies, the best detox methods, right exercises.. I would not be so sure that your spine could not be less stiff. What may happen if you get some flexibility and without the effect of gravity force, you remains for a time with your curve reduced?. Would be impossible something like that?

Well, I believe that something must to exists to solve your problem and probably the right professional/s are not so far. I really hope you may find them.

rohrer01
09-12-2012, 07:48 PM
Flerc,
I'm okay. Detox probably wouldn't do me any good. I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia. I asked the doc if it is related and he said no one knows for sure. I asked if it was the same as fibromyalgia and he said, "No." People with fibromyalgia have pain of unknown origin. When nerve conduction studies are done in them, the painful muscles are "silent". People with dystonia have "noisy" muscles, meaning there is a lot of activity going on. This is probably the source of most of my pain. There are people that have both scoliosis and dystonia. There are people with just one or the other. That's why they don't know if they are related.

When my spine regained flexibility through chiropractic, it began to collapse. Thus a case of "progression in stable scoliosis". Anyway, this is getting off topic. I don't want to hijack Pooka1's thread.

Take Care.

Pooka1
09-12-2012, 07:54 PM
Anyway, this is getting off topic. I don't want to hijack Pooka1's thread.

No I have no problem with topic drift. People should talk about whatever is of interest to them. Anyone who complains about legitimate topic drift (as opposed to not wanting to address the issue and throwing up subterfuge) is concerned about form over substance and not to be taken seriously. This is a medical group to help people get information.

rohrer01
09-13-2012, 01:01 AM
Thanks, Sharon. =)

flerc
09-15-2012, 01:59 AM
Flerc,
I'm okay. Detox probably wouldn't do me any good. I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia. I asked the doc if it is related and he said no one knows for sure. I asked if it was the same as fibromyalgia and he said, "No." People with fibromyalgia have pain of unknown origin. When nerve conduction studies are done in them, the painful muscles are "silent". People with dystonia have "noisy" muscles, meaning there is a lot of activity going on. This is probably the source of most of my pain. There are people that have both scoliosis and dystonia. There are people with just one or the other. That's why they don't know if they are related.



Of course pain should to be avoided. Also it seems to be a vicious cycle between pain and bad posture to avoid the pain, leading to increase the curve. I hope you may find something better than meds, but in the meantime, you should try to avoid their bad effects. I have heard about some methods to detoxify even the liver. Some of them (I'm almost sure) consist in natural foods as some kind of algaes.

Is reasonable to think, as many people believe, that stiffness is the cause of progression during growth. Someone believe is provoked by muscles, others by ligaments, other by spinal medullar.. I don’t imagine how chiropractors make a spine flexible (I think they are only focused on bones) , but I have heard that many times before, so surely they can.

After growth, only some kind of force (as gravity force) can provoke progression and it not seems reasonable to believe that stiffness may provoke progression.. not in a direct way, but may lead to pain, which in turn may lead to bad posture (an inner force). Anyway stiffness may be sometimes the only one ‘good force’ counteracting the bad forces. Then flexibility may leave the bad forces without resistance, but of course, only those bad forces are the cause, not the flexibility.

Probably in your case, pain or high tone because dystonia might be those bad forces. Some Spain Drs said that IS is provoked by a ‘soft’ kind of dystonia.. it has sense, who knows. I hope you can find a cure to it.

Karen Ocker
09-18-2012, 07:00 PM
After Chiropractic my spine curves severely. I add that everyone is terrified of surgery but, in 1956, my spine hurt, I was very deformed and scoliosis surgery was not as advanced as now. I needed to stay in plaster casts until the fusion healed. We are talking 56 years ago!!!!
I actually welcomed surgery and would do anything to look better. That surgery gave me 46 years of normal life before I needed my(successful) revision AT AGE 60.
I am 70 AND STILL PAIN FREE.

Pooka1
09-18-2012, 07:43 PM
After Chiropractic my spine curves severely. I add that everyone is terrified of surgery but, in 1956, my spine hurt, I was very deformed and scoliosis surgery was not as advanced as now. I needed to stay in plaster casts until the fusion healed. We are talking 56 years ago!!!!
I actually welcomed surgery and would do anything to look better. That surgery gave me 46 years of normal life before I needed my(successful) revision AT AGE 60.
I am 70 AND STILL PAIN FREE.

Some chiros would sit there and deny you exist. There is breath-taking ignorance in that camp and so many others.

flerc
09-19-2012, 11:13 AM
We are talking 56 years ago!!!!

And fusion continues being what ever was..

flerc
09-19-2012, 11:55 AM
I donít imagine how chiropractors make a spine flexible (I think they are only focused on bones) , but I have heard that many times before, so surely they can.


Rohrer, do you remember if your chiropractor did something with your ribs?

flerc
09-19-2012, 04:21 PM
I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia.


Did you heard about Neural Therapy? Is used to reduce pain and cervical dystonia. It seems to work on the neurovegetative system.

jrnyc
09-19-2012, 08:58 PM
i know i had scoli earlier than i first thought....
officially it was diagnosed at age 31, but i think i remember
a doctor mentioning something to me when i was 18....
and...ballet became harder and harder for me before i was
even a teen....i think partly due to imbalance of my body....from scoli...
yet...i doubt i was congenital....
who knows...
i do know that, a couple of years ago, Dr Lonner thought
my curves were "relatively stable" but thought my discs
were getting worse...
an X ray i had January 2012 showed my lumbar curve increased
since he said that (in April 2010)...by 9 degrees...

i have an appointment to see Lonner again end of October....
want to see if he reads my lumbar curve as 70 degrees, as the
doctor who ordered X ray does...

regardless...i am NOT surprised in any way that my scoli progressed...
and i do NOT believe the statistics...i bet there are more who
progress who aren't "supposed to" than research hears about

jess

Pooka1
09-19-2012, 09:23 PM
regardless...i am NOT surprised in any way that my scoli progressed...
and i do NOT believe the statistics...i bet there are more who
progress who aren't "supposed to" than research hears about

jess

Perhaps.

I just hope surgeons are more candid with patients and parents so there aren't more complete meltdowns in surgeon's offices over having to wear a brace for years AND needing fusion. There's a kick in the teeth right there that would be hard to get over I imagine especially if you had one or both parents constantly haranguing the kid to wear the brace because "You don't want surgery, do you? Then wear the brace!" I am guessing 100 out of 100 parents have said that to their kids who are braced not out of maliciousness but out of cluelessness.

rohrer01
09-20-2012, 01:18 PM
Jess,
I believe as you do, that statistics are irrelevant to the patient after the fact of progression. There are outliers, and I'm sure that the stats aren't as pretty as many people try to pass them to be. It's mathemagics. I went to the doc yesterday for my trigger points. My muscles are so hard that he had a hard time even getting a needle into them. When he did, it made a horrible crunching noise. There's not a whole lot of people like me out there. I asked what they could do for people like me and he said there weren't a whole lot like me. He said my scoliosis was complicating things with my muscles. So I'm one, it seems, that is breaking new ground. I asked him why I'm not shrinking and yet my scoli is progressing. He attributed it to rotation. Then I mentioned that my belly button was off center. He said those are important landmarks to go by. Now I don't know whether I should revisit surgery. He finally ordered my lumbar epidural for next week. I'll see how my pain is after that, then make my decision whether to go back to the scoli doc.

Sharon,
I know a young woman who was braced for several years during the most difficult years of a young girls life. She ended up with a fusion at age 16. I have to say that she was never promised that the brace would prevent fusion, she hoped it would. When I asked her if she would have done it the same way knowing that she would end up needing fusion, she said, "Yes." When I asked why, her reasoning was that the brace probably helped her spine from getting even worse, even though she hated wearing it. In hindsight she was afraid of an even bigger surgery. As it was, they didn't get her curve completely straight because she had so much rotation. She's left with rotation and a rib hump (not as bad as before surgery) but is very happy she had it done.

Flerc,
No, I haven't heard of the therapy that you mentioned. I've never heard of the neurovegatative system nor seen it described in any medical textbook. If it is a legitimate therapy, I'm sure it would have been offered. If it is legitimate and just not practiced over here in the States, I would be interested in reading about it. I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance. My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing. My dad had trouble with his legs and died of some type of muscular dystrophy. =(

flerc
09-20-2012, 11:10 PM
No, I haven't heard of the therapy that you mentioned. I've never heard of the neurovegatative system nor seen it described in any medical textbook. If it is a legitimate therapy, I'm sure it would have been offered. If it is legitimate and just not practiced over here in the States, I would be interested in reading about it. I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance.

Rohrer, if you look for "neurovegetative system " Pubmed, you'll get a lot of links like this
http://www.ncbi.nlm.nih.gov/pubmed/20940666
Is also called as ANS http://advan.physiology.org/content/30/1/9.full

I believe that only people obtaining good outcomes with it may say that a therapy is legitimate. I have heard many times about Neural Therapy, but I don't know nobody trying with it. I have read is the outcome of the the researches of recognized physiologists, but If you are only looking for therapies belonging to the official medicine, surely NT not belongs to that group.. at least not up to now. Who knows within some years, as have ocurred with other therapies.



My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing. My dad had trouble with his legs and died of some type of muscular dystrophy. =(
I have read that may be a scoliosis cause but I didn't know that muscular dystrophy may kill.
I have read that may be provoked because different causes. I hope you may know wich of all corresponds to your case. The right professional should to know it.

rohrer01
09-21-2012, 07:32 AM
Is also called as ANS

Ahh, the autonomic nervous system. That makes more sense, now. Thanks, Flerc. I'll look at the links.

Yes, Muscular Dystrophy kills. It paralyzes the muscles gradually. My dad was paralyzed in the feet, legs, arms, lower jaw and throat, then finally his diaphragm, in that order. They die of pneumonia from not being able to breathe. Some dystrophies are autosomal dominant, meanining each child has a 50/50 chance of inheritance.

I read the articles. The second one is splitting hairs in medical terminology. The autonomic nervous system is, in whole, the part that keeps going when a person is unconsious. Breathing has characteristics of both, but usually continues during a state us unconsciousness. It's like the term "minimally invasive". It's hard to come up with medical terms that describe exactly the thought being conveyed.

flerc
09-21-2012, 10:14 AM
It's like the term "minimally invasive". It's hard to come up with medical terms that describe exactly the thought being conveyed.

Yes, but fortunately hypocrisy is not needed to denote somethig as the ANS.

rohrer01
09-21-2012, 10:41 AM
Yes, but fortunately hypocrisy is not needed to denote somethig as the ANS.

Not hypocrisy, just lack of a better term. Language is a hard thing and there are not single words that precisely define everything.

Now we are off topic. Sharon is going to nail us both for hijacking her thread. =)

flerc
09-21-2012, 10:57 AM
Yes, Muscular Dystrophy kills. It paralyzes the muscles gradually. My dad was paralyzed in the feet, legs, arms, lower jaw and throat, then finally his diaphragm, in that order. They die of pneumonia from not being able to breathe. Some dystrophies are autosomal dominant, meanining each child has a 50/50 chance of inheritance.


I have heard about autoimmune diseases leading to something like that. Certainly pulmonary fibrosis provoke pulmonar paralysis.
I saw an incredible cure of some of those strange autoimmune diseases with stem cells.. but you need inmediately that someone says you what certainly happens in your case. We are living in the XXI century! It cannot be that Drs cannot say you the cause of your problem!

flerc
09-21-2012, 11:01 AM
Not hypocrisy, just lack of a better term. Language is a hard thing and there are not single words that precisely define everything.

Now we are off topic. Sharon is going to nail us both for hijacking her thread. =)

Hipocrisy is the only one reason that someone may imagine to choice a term being EXACTLY the opposite that it will denote. Language is something very rich and is not needed so much imagination or inteligence to think in the right term!.

flerc
09-21-2012, 11:15 AM
I've tried myofascial release, which seemed to be nothing more than an exercise in relaxation. I don't have the money to spend on alternative medicines that aren't covered by insurance. My muscles are very hard. It would take a miracle to return them to normal. I'm thinking it's more of some sort of inherited thing.


As I said you recently, you must to know what is provoking your muscular dystrophy. Certainly if the cause is something like an autoimmune disease or a lack of some specific mineral or vitamin, probably you cannot expect so much about any kind of PT. Anyway I believe that the right massage (something millenary as Tui Na) should to help in some way and in your case a muscular chains oriented PT seems to be more indicated that a fascia oriented method as I suppose that MFR is (check it, really I don’t know so much about MFR).

flerc
09-21-2012, 11:32 AM
Certainly if the cause is something like an autoimmune disease or a lack of some specific mineral or vitamin, probably you cannot expect so much about any kind of PT.

Who knows.. but anyway, if it is provoked by a neurologic dysfunction, probably a neurologic oriented PT should be choose.. something as Vojta, which also is used in scoliosis and dystonia. I know about a great improvement in a neurologic scoliosis.. although it was combined with osteopathy.. Vojta was a neurologist and his method is used mainly in kids but also in adults.