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View Full Version : anyone know about studies on psychological impact on development of IS?



lauriek
12-08-2008, 07:35 PM
When I learned I had idiopathic scoliosis at age 26 when it was already 55/35, i was convinced i knew why. i had spent a lifetime under chronic stress from bad family dynamics. i felt alone, surrounded by hostile forces, not protected. i'm sure predisposition was there, but am convinced scoliosis developed to such a degree due to chronic tension. (now at age 55 it's 80/55). i have a theory that it may start as body's way of protecting vital organs, as if threatened by a physical danger - body starts curving in on itself. And if those perceived threats persist, causes permanent distortion to skeleton.

just wondering how many others believe psychological factors played significant role in their idiopathic scoliosis.

Karen Ocker
12-11-2008, 07:00 PM
The progression you describe has occurred in many of us without any other stress. Research so far suggests curve progression might be genetically determined. Some curves do not progress especially if they are below 40 deg at skeletal maturity. Curves over 40 deg can progress 1-3 degrees a year over a lifespan.

Keep reading the posts and educate yourself.
Progressing curve have a psychological impact on the person as they increase.
The National scoliosis Foundation has educational info.:

http://www.scoliosis.org/info.php

lauriek
12-13-2008, 12:51 AM
I'm not saying all idiopathic scoliosis has psychological component. Prevailing wisdom is there are probably different reasons people get idiopathic scoliosis. There can be a strong genetic component for some. But not for others. There was no known history of scoliosis in my family. I think psychological stressors can be one thread for its development. Several friends I know with scoliosis fit that profile of traumatic family dynamics. So does "Unwinding" author Martha Hawes. Just wondering how common it is compared to general population. There is also a tightly wound physical appearance to some with scoliosis, maybe that is related to another theory - problems with seratonin. Also wonder if there is an ethnic component. Based on my limited observations, which includes me and some friends, Eastern European Jewish women seem to be disproportionately represented.

I was offended by your telling me to 'educate myself'. I have been reading quite a bit on the forum and elsewhere. Was it really necessary to throw that language in? Especially when you misinterpreted and jumped to a wrong conclusion. You didn't know me or what I had or had not read. You couldn't have communicated your point in a different way, such as 'were you aware that....? There is a lot of hurtful language on this forum -- diminishing of person vs. discussion of ideas.

I don't want this to turn into another one of those threads that goes from disagreement to war. Just ask you to be sensitive to word choices. It matters and many of us are pretty vulnerable. We need hugs, not slaps.

Laurie

Pooka1
12-13-2008, 12:35 PM
I'm not saying all idiopathic scoliosis has psychological component. Prevailing wisdom is there are probably different reasons people get idiopathic scoliosis. There can be a strong genetic component for some. But not for others. There was no known history of scoliosis in my family.

My husband has one cousin with scoliosis. That is it for his entire side of the family. There is nobody known to have scoliosis on my entire side of the family. My daughters have scoliosis.

Just as a point of information, about 25% of Marfan's syndrome patients, most of whom have scoliosis, have a de novo spontaneous mutation.

Over time, I predict ALL idiopathic scoliosis cases will be mapped to genetic mutations.


I think psychological stressors can be one thread for its development. Several friends I know with scoliosis fit that profile of traumatic family dynamics. So does "Unwinding" author Martha Hawes. Just wondering how common it is compared to general population. There is also a tightly wound physical appearance to some with scoliosis, maybe that is related to another theory - problems with seratonin. Also wonder if there is an ethnic component. Based on my limited observations, which includes me and some friends, Eastern European Jewish women seem to be disproportionately represented.

You are correct to wonder about the general population. You might find a control group has more stress and yet no scoliosis. Without a comparison group, it is impossible to be able to say stress is even a little bit related to development of scoliosis.


I don't want this to turn into another one of those threads that goes from disagreement to war. Just ask you to be sensitive to word choices. It matters and many of us are pretty vulnerable. We need hugs, not slaps.

I suggest we ALL need high-quality scientific studies, not paranormal woo-woo.

Susie*Bee
12-13-2008, 05:34 PM
Hi lauriek-- I don't know if you want input like this from some of us or not, but thought I'd let you know that I didn't have any psychological stress/trauma to attribute my scoli to. Take care.

Karen Ocker
12-13-2008, 07:15 PM
lauriek:

No offense was meant. Sorry it came across that way.:(

In my case I was so severely affected that I suffered emotionally from it(100 degrees as a 14 year old). Not walking for a year, in a series of body casts after my first surgeries in 1956---and a very limited correction which I lost by middle age.

I am a medical professional and have read, in the scientific literature, that scoliosis incidence is spread pretty evenly all over the world in all ethnic and racial groups.

In my particular family the major stress was from my scoliosis meaning my parents had little money and limited medical insurance to cover the year-long treatment at that time. My parents were very loving and always there for us three kids. One the maternal side: my sister, brother, mother and girl cousin all have scoliosis. My mom is now 92 and she always looked straight to me. In her old age she is really twisted. My brother and sister's curves are not noticeable even in bathing suits. My girl cousin has back pain and her curve is mainly lumbar while mine were a triple curves. Interestingly, my cousin on my father's side had a child needing scoliosis surgery. Why I had the great fortune to end up so badly affected is beyond me---unless I got the gene from both sides because it's in both sides of the family.

Ethnically I am Russian, Estonian, Czech and Polish. My girl cousin is German, Polish and Estonian. The child, of he boy cousin, who had scoliosis surgery is Italian, Norwegian, Czech and Russian extraction. Go figure.

LindaRacine
12-13-2008, 10:37 PM
I Based on my limited observations, which includes me and some friends, Eastern European Jewish women seem to be disproportionately represented.

I've never heard that before, and it doesn't appear to be true in the group of people I know with scoliosis (which is probably considerably more than average, since I've been involved in running a scoliosis support group for about 20 years). There is a related condition, dysautonomia, which affects descendants of Ashkenazi Jews. And, while I've only gotten to know about 20-30 of my support group buddies well, I can't remember any of them talking about having bad childhoods. Like yours, however, that's just anecdotal evidence.

Your theory is interesting, but I doubt that even if it were true, it could ever be proved. I understand what you're feeling in terms of thinking that you know what caused your scoliosis. In the past, I've convinced myself that something that happened to me, or something I was doing was causing a problem. In the end, I've never been correct. If you read all of the posts on these forums, you'll find people who feel that other unusual things caused their scoliosis, or caused their rods to break, etc. I guess it's natural to want to know there's a specific reason for everything, but in the end, it really doesn't matter.

For the record, I'm one of 8 children, and the only one with scoliosis. My childhood was pretty normal.

Good luck finding your answers.

Regards,
Linda

SandyC
12-14-2008, 09:54 AM
LaurieK,

"Also wonder if there is an ethnic component. Based on my limited observations, which includes me and some friends, Eastern European Jewish women seem to be disproportionately represented."

My family is Northern European, German/English/Scot/Norweigean with both sides having scoli. I had a happy childhood. I think with a bit more research you will find a strong genitic factor.

SandyC

CHRIS WBS
12-15-2008, 09:23 AM
I am one of four siblings and the only one with scoliosis. As far as I know, there is no history of scoliosis in my family. I have a twin brother and when I look at old photographs of us together, I towered over him by the time I was 11. Today he towers over me. I think my scoliosis can be attributed to a rapid growth spurt that occurred between the ages of 11 and 13. By 14 I noticed my hip was out of whack and my grade school graduation dress just didn’t fit right. I had a normal happy childhood and was not subject to any psychological stress, but I am of Eastern European descent, all of my grandparents having emigrated from Poland.

Pooka1
12-15-2008, 10:41 AM
I am a medical professional and have read, in the scientific literature, that scoliosis incidence is spread pretty evenly all over the world in all ethnic and racial groups.

I think I may have read that also at some point.

Same situation with identical twinning... no pattern. Completely random as far as anyone can tell.

ETA: The randomeness has to do with the original mutation(s). Clearly some scoliosis is heritable. So in that way, it differs from identical twinning which really is totally random as far as I know.

tonibunny
12-15-2008, 03:35 PM
I personally very much doubt that scoliosis is generally caused by pyschological stress (so many people suffer thus, without developing scoliosis) but I do think that there may be an ethnic component. I don't know about AIS, but Infantile Idiopathic Scoliosis is supposed to be much more prolific in Europe than in other countries, and especially amongst children with an Irish or Celtic heritage. I've read this in more than one medical journal and it has been mentioned to me by surgeons (I have IIS myself) but I'm afraid I don't have any online links.

trcylynn
12-16-2008, 02:52 PM
Interesting you should say that/ask that.... I recently (need to read it again) read a book called "You can heal your life" by Louise Hay. Not to go through everything but in the back it lists a bunch of medical conditions and for scoliosis it says something like not certain in life or feeling weighed down/un-supported or not trusting life- something along those lines. Which, I would imagine one would feel that way if very stressed. My personality fits the outcome even though I did not have a "stressful" life persay.

Let me know if you find it or read it or what you think.

Wishing
12-18-2008, 03:06 PM
Dear LaurieK,

While it may or may not have anything to do with the development of scoliosis, the stress factor did cross my mind from time to time. My sister and I both have scoliosis. My curves were 95T and 70L degrees. We have very large extended families who are Irish and French Canadian, but there are no other cases of scoliosis in the family that we know of. However, in my immediate family, there was an extreme amount of chronic stress, and I carried myself with a great amount of muscle tension although part of that may have been to try to appear straight with my body fighting me all the way. I too wondered if severe chronic stress with resultant muscle tension may have contributed to the rapid severe progression which I experienced. However, I may just have to wonder! Also, my sister and I were sick as young children with fevers for about a month with a country doctor making house calls. We may not have been fully diagnosed. Also, fell down a flight of stairs at age 10 bumping every vertebrae in my back along the way. Also, stressed my back running at age 9. All I know is that I was diagnosed at age 10 1/2 and until age 14, I developed a very severe case of scoliosis. There may indeed be a genetic component.

Pooka1
12-18-2008, 04:17 PM
My one daughter's curve moved ~5* (on average) per month for seven months.

She leads a relatively comfortable, stress-free life.

Put another way, if she is stressed, I don't know what unstressed is. :eek:

I happen to have a control subject (her identical twin) who is leading a very similar, relatively comfortable, stress-free life. Her curve didn't move much at all during this identical several month time frame.

I really think it's time to put this particular hypothesis to bed on the weight of evidence against it at this point.

txmarinemom
12-20-2008, 01:00 AM
Um ... JIS/AIS.

I = Idiopathic. There's no proof it's related to *anything, hence "idiopathic" = unknown.

It's meant this since I was dx'd in 1978, and it still stands true.

I was raised by the Cleavers, BTW, *and* I'm a mutt.

lauriek
12-20-2008, 01:12 AM
I like connecting with my scoliosis tribe. It's interesting.

To Susie Bee who wasn't sure if I would like her input that she didn't have psychological stress. Absolutely! That's why I put the question out there to see what others' experiences were.

To Karen Ocker, ditto. Thank you for sharing your experiences. That must have been especially tough to have the curve progress so quickly at that age, and at the same time to know the financial toll it was taking on your family. That was quite a burden to deal with. I agree, in addition to issues I was already facing before scoliosis, just dealing with scoliosis has also taken its toll on me - even without major discomfort issues up till recently. Dealing with the appearance was the big one for me. I realize now it began in early adolescence when appearance was so important, even though I didn't have a name for it, when I noticed difference in waist, hip, posture. And by late 20's people were looking at me with great pity when I wore a tight tee-shirt. That's when I discovered that I was deformed, literally a hunchback. I'm not blaming scoliosis for my lousy social life. But it didn't help.

Thanks to everyone who shared ethnic & psych background and to Linda Racine for interesting fact about dysautonomia - would like to know more. Never heard of it.

To trcylynn about Louise Hay's book. I've heard of her before, and will track down her book. Thanks for the mention.

To Wishing (interesting name choice by the way), you have had more than your share of challenges with the scoliosis, family dynamics, fall and other physical harm. How have you coped? I appreciate the validation of your also wondering about psychological component.

To Sharon - I'm not ready to put theory to bed yet. Just because psychological stress is not always a factor does not mean it is not ever a factor. Most of studies and theories I've read postulate there are environmental agents acting on genetic predisposition. Agents can include things like hormones at puberty, but certainly emotional stress could be one as well. There's a lot of forces working on scoliosis and different people may be susceptible to different influences.

Pooka1
12-20-2008, 08:23 AM
To Sharon - I'm not ready to put theory to bed yet. Just because psychological stress is not always a factor does not mean it is not ever a factor. Most of studies and theories I've read postulate there are environmental agents acting on genetic predisposition. Agents can include things like hormones at puberty, but certainly emotional stress could be one as well. There's a lot of forces working on scoliosis and different people may be susceptible to different influences.

That a good point but if we can't design a study to show it, then we can never really know it.

lauriek
12-28-2008, 03:17 AM
Based on the response on this forum, only a small percentage believe emotions had anything to do with the development of their scoliosis. So it is not a popular idea. But if there were support for it, I don't see why someone couldn't design a study to evaluate psychological impact on adolescents with scoliosis. I'm sure the psych world has many tests to evaluate people for various conditions. While we are looking at possible triggers, why not consider factors such as family dynamics or depression - especially if a link is confirmed between serotonin and some scoliosis? Study could separate two groups of adolescents who rank high on stress, anxiety, depression or some other psych measurement. Treating one group with counseling or other psych aid, in addition to traditional medical care, and treating the other solely with traditional medical care and seeing if there is any difference in progression of curve.

And change of subject. Sharon if you believe that all of scoliosis will eventually come down to genes, then how do you explain how your identical twins could have such a difference in the progression of their curves? They're the same age and have the same genes, so why is one progressing so much faster than the other? Obviously other things must factor in - nutrition? injury? what do you think?

txmarinemom
12-28-2008, 06:02 AM
The progression you describe has occurred in many of us without any other stress. ... Some curves do not progress especially if they are below 40 deg at skeletal maturity. Curves over 40 deg can progress 1-3 degrees a year over a lifespan.

I'd also like to note, my curve (JIS dx) held within the margin of error (48-53°) throughout adulthood - and two (to term) pregnancies. I'd always heard > 50° can be expected to move ±1° a year, but that wasn't at all the case with mine.

A fluke, perhaps ... or just a more closely documented case.

Regards,
Pam

Pooka1
12-28-2008, 09:21 AM
Based on the response on this forum, only a small percentage believe emotions had anything to do with the development of their scoliosis. So it is not a popular idea.

"Believe?" "Not a popular idea?"

This is science. Belief doesn't come into it. Scientists accept things based on evidence. If folks don't believe it, it's because there is no evidence for it. If you have evidence, you don't need faith.

And Galileo was one of at most a few people who KNEW, not believed, that the earth rotated around the sun. Most people thought the sun revolved around the earth. That was a popular idea which was completely wrong.


But if there were support for it, I don't see why someone couldn't design a study to evaluate psychological impact on adolescents with scoliosis. (snip)

Actually, this types of things are considered in bracing studies for example. Even if 23 hr a day hard bracing were shown to work, it may be the psychological burden of wearing that for a few years is far greater than fusion surgery (the only proven modality to stop and correct a curve). It certainly seems so at least. Life is short. This is the only go around we have. These considerations matter in my book.


And change of subject. Sharon if you believe that all of scoliosis will eventually come down to genes, then how do you explain how your identical twins could have such a difference in the progression of their curves? They're the same age and have the same genes, so why is one progressing so much faster than the other? Obviously other things must factor in - nutrition? injury? what do you think?

It could come down to gene copy numbers which are known to differ between identical twins. Or conditions in the womb may matter. One twin has been diagnosed with hypermobility syndrome but not the other. Other identical twin pairs differ in diagnosed conditions so there is some variation even starting with the same DNA.

Finally, with female twins, there is the possibility of Lyonization wherein a differ X chromosome become dominant in each girl. Because one X is from the mother and one from the father, those girls can have different conditions.

They eat the same stuff and have always done so. And if injury were related to scoliosis, we'd see much more of it out there. That doesn't seem to be possible.

And by the way, the twin with the hypermobility is the one with the slower progression rate and almost no rotation until she got past 40*. If muscle tone is able to slow/correct scoliosis as is the paradigm of Schroth and all PT approaches, then I think they have their work cut out for them. It is consistent with the lack of results from that camp to date.

lauriek
02-03-2009, 06:31 PM
i used the word 'believe' instead of 'fact', because as you well know - self reporting is not the same as scientific fact. just saying it's so doesn't make it so. could be. just don't know. other factors could come into play - denial, cultural variations. also, was a limited response, hardly conclusive.

regarding schroth -- you seem to take the reverse position. despite several people on this forum who have said they got benefits from schroth, you have challenged their experiences as somehow not credible.

so let me pose a reverse challenge. schroth has been around for almost a hundred years. you question why there haven't been more studies to prove its benefits. that's a legit question. it does open up the treatment to skepticism as to why that hasn't been done. but there is another point to consider. thousands of people have gone through the treatment annually. and yet i have not read one post on this forum or anywhere that states that schroth is a scam. for other alternative treatments there have been many postings of scams. but not schroth. even for scientifically validated conventional medical treatments you will get complaints from patients about its effectiveness. so the 'fact' that there is so little negative buzz about schroth should at least indicate there is some benefit to it. why are you so intent on believing it's a scam? doesn't mean we shouldn't want more proof. for any treatment it's good to see numbers and outcomes. but at the least from feedback and literature this treatment is legit. the people practicing it, and people availing themselves of it believe in it and indications are it has helped.

Pooka1
02-03-2009, 07:21 PM
regarding schroth -- you seem to take the reverse position. despite several people on this forum who have said they got benefits from schroth, you have challenged their experiences as somehow not credible.

There are several people here who will tell you prayer works also. Yet there is not one wafer-thin iota of actual evidence prayer works.

What really seems to work is no prayer...

My horse recovered completely from a very dicey orthopedic condition that required months of rehab with no certain outcome ALL through the power of no prayer whatsoever.

My kid had all four (unerupted) wisdom teeth removed on a Friday and it was uncertain if she could attend school the following week. There were two snow days and a delayed opening that following week. That was enough time off so that she could attend school when it reopened, much to her relief (less work to make up). Why did that happen? You guessed it... though the power of no prayer whatsoever!


so let me pose a reverse challenge. schroth has been around for almost a hundred years. you question why there haven't been more studies to prove its benefits. that's a legit question. it does open up the treatment to skepticism as to why that hasn't been done. but there is another point to consider. thousands of people have gone through the treatment annually. and yet i have not read one post on this forum or anywhere that states that schroth is a scam.

That is incorrect. There are any number of people who say it didn't work. And the (lack of) convincing pubs bears that out.


for other alternative treatments there have been many postings of scams. but not schroth.

That's incorrect.


even for scientifically validated conventional medical treatments you will get complaints from patients about its effectiveness. so the 'fact' that there is so little negative buzz about schroth should at least indicate there is some benefit to it.

If there is benefit then why haven't the purveyors shown it?


why are you so intent on believing it's a scam? doesn't mean we shouldn't want more proof. for any treatment it's good to see numbers and outcomes. but at the least from feedback and literature this treatment is legit. the people practicing it, and people availing themselves of it believe in it and indications are it has helped.

Everybody knows it but nobody shows it.

You know what that means... not science.