Re: Scoliosis Research Study at Washington University

[Guest guest]

Do you know the names of the other four spine centers that are participating?PeggyOn Mon, Sep 5, 2011 at 5:15 PM, Sue Zorn <smzorn@...> wrote:

 

Hi Everyone -

 

    I have some proactive, good news to share.

 

    Washington University in St. Louis is participating in a research study entitled.......A Multicenter Prospective Study of Quality of Life in Adult Scoliosis.  This study is sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS) which is part of the National Institute for Health (NIH).  The purpose of the study  is to evaluate the effectiveness of nonsurgical and surgical treatments in patients with adult symptomatic lumbar scoliosis and to identify important factors related to patient reported outcomes (such as pain, activity, appearance, etc).

 

    There are 5 spine centers in the US participating the study.  Approximately 93 participants will be enrolled at Washington University.  There will be a total of 300 participants enrolled by the five centers.

 

    Dr. Bridwell (my Doctor ) and Dr. Lawrence Lenke at Washington University are co-investigators for this study.  Dr. Lenke is the designer of surgical instrumentation manufactured by Medtronic Sofamor Danek.  This instrumentation may be used in the surgery of some of the patients being recruited for this study.

 

     I was asked to enroll in the study on August 1st during my first visit with my future surgeon, Dr. Bridwell.  This is an Observational and Randomized study in which they will be enrolling patients over a five-year period.  All participants will be in the study for at least two years.  Participants are reimbursed for their time.

 

    For additional information contact either Baldus, Project Manager at 314-747-2655 or baldusc@... or Azeem Ahmad, Study Coordinator, at 314-747-2817 or admada@....

 

     I am returning the end of this week for my 2nd visit with Dr Bridwell with tentative surgery date the end of Sept.

 

     I'm glad to be able to share this important news!

 

           Sue Zorn

From: <elizabethrgonzalez@...>

Sent: Sunday, September 4, 2011 3:37 PM

Subject: Re: just throwing this out there..

 

Hi, Kathy --That's a good idea. tends to know about everything that's happening anywhere re scoliosis. (She ran one of the first online groups I joined, before several of us decided we needed a specific flatback group. Later she also participated in this group, but I don't think she does anymore. It's nice to know someone from the old days whom you can still find online somewhere! I've lost track of so many folks, including the now-famous Mina.)

I think the member who wrote to us about early walking was just trying to find out if there was any correlation. Many of us with special situations have checked with others to see if the same thing might apply to them. This reflects how little we know about what conditions or circumstances relate to the development of scoliosis. The research money has

historically gone chiefly to spinal surgeons -- NOT to that brave and commmendable handful of investigators who have spent a lifetime trying to get any clue at all to the cause(s) (and thus, perhaps, the prevention) of this hugely life-altering spinal deformity.

Similarly, we have no substantial body of longitudinal data on sixty-plus years of scoliosis treatment for which we, and a few of our mothers, have been lifelong guinea pigs. The " data, " such as it is, shows up only when a couple hundred of us start showing up at varioius surgeons' offices with some new disaster such as flatback syndrome. Once the surgeons compare notes at enough annual meetings to realiza that this is a general phenomenon, not an isolated rarity, and once they finally go public with the information -- a process that

can take 10-20 years or longer--they may already be dealing with the next large=scale iatrogenic calamity resulting from yet another " state-of-the-art " surgical technique or " new and improved " edition of spinal hardware. Fortunately the news that Luque rods were also dangerous in terms of encouraging flatback syndrome came considerably faster than the initial bombshell concerning the Harrington rod. Sadly, we are only just beginning to consider whether the FDA should be keeping an eye on various types of spinal hardware (not to mention

other implants, such as certain cardiac valves, which have damaged people). There is no mandatory let alone uniform system for reporting problems related to scoliosis surgery. It's important to realize that such a system would not necessarily help patients, since problems tend to show up only over the long term, when the damage is already

done -- but if some of these reforms were instituted, at least we might have a substantial body of data to consult for knowlede of how scoliosis patients in general have fared in life. We don't know the causes, the possible " cures, " the natural history of treated and untreated scoliosis -- we basically know nothing. We have a major original deformity, scoliosis, which has been reported since antiquity, yet it is still a gigantic mystery to humankind.

I suspect that when we reach out to one another with these occasional anecdotal queries -- " Did you have early osteoporosis too? " " Have you been diagnosed with narcolepsy or some other sleep disorder? " " Were you early/late with such-and-such developmental milestone? " we are probably hoping beyond hope that we may stumble on a signficant clue somewhere even in the absence of methodical scientific

research.Best,-- , KATHY MIXON <kathyinbk@...> wrote:

>> - I don't really get the corrolation with the early walking BUT...I found your last post interesting.  My original scoliosis " S " curve was 81 degrees.   I also was somewhat late with menarche (1 month shy of my 16th BD)...and I was COMPLETELY done with menopause by my 45th BD.  My menoppause started & ended so quickly that I made them check me for

cancer.  Thank God it was all clear.  Early menopause does not run in my family though.  Both of my sister have scoliosis but only very slight curves & are currently going through nightmare menopause(s).  Things that make me go hmmmmm.  I'll ask R. that works at UCSF if she has heard anything new about the study.................................................Kathy

> > > From: Sue Zorn <smzorn@...>> " " < >

> Sent:

Thursday, September 1, 2011 11:41 AM> Subject: Re: just throwing this out there..> > >   > My Mom was 25 when I was born.>  >     Sue Z.> >

> From: <elizabethrgonzalez@...>> > > >Sent: Thursday, September 1, 2011 6:35 AM

> >Subject: Re: just throwing this out there..> >> >> >  > >These posts are very interesting. My son was a very early walker but has> >no scoliosis. I'm pretty sure I crawled as much as the average baby,

> >but -- probably neither here nor there -- I started talking rather late.> >My mother said

my brother and I both were late to talk, and when we did> >finally have something to say, we said it in complete sentences. I have> >scoliosis; he doesn't. Since we did start talking, neither of us has

> >stopped.> >> >Has anyone heard anything about that big study Medtronic was supposed to> >be sponsoring, the one that was going to use the huge archives in Salt> >Lake City to examine the genetics/genesis of scoliosis?

> >> >It amazes me that we still have nary a clue what went wrong. As a group,> >we do seem to show up in this or that isolated research study as having> >other distinct abnormalities, such as problems with vestibular balance

> >and a tendency toward (if I'm not mistaken) certain connective tissue> >disorders.> >> >For what it's worth, I had a slightly

late menarche and a somewhat early> >menopause. (Unfortunately my internist misread a lab result and told me> >I was definitely NOT going through menopause, so I spent a year thinking> >I was losing my mind.)

> >> >Here's another far-out speculative question: How old was your mom when> >she had you? My mother was 41.> >> >Best,> >> >> >>> >> I was a late walker at 17 months and late for onset of puberty. My> >scoliosis appeared when I was 16 years old and I had surgery when I was

> >17.

My middle son has a mild curvature that we are monitoring, he> >walked at 13 months, a very average age to start walking. Just FYI.> >>> >>> >>> >> Jeanne

> >>> >>> >>> >> From: > >[mailto: ] On Behalf Of Sue Zorn

> >> Sent: Sunday, August 28, 2011 10:12 PM> >> > >> Subject: Re: just throwing this out there..

> >>> >>> >>> >>> >>> >> HI Everyone -> >>> >>> >>> >> I walked at 8 months.............and have adult on-set scoliosis

> >apparently from Degenerative Disc Disease. This is first time I have> >heard about this theory of a connection between early walking & > >scoliosis.> >>> >>> >>

> >> Sue Z.> >>> >>> >>> >> From: Izarah Star izarahstar@> >>

> >> Sent: Saturday, August 27, 2011 4:03 AM> >> Subject: just throwing this out there..> >>> >>> >>> >>> >>> >>

> >>> >>> >> i was one of those babies who never crawled (which is a huge> >milestone-or so i am told)- at just under 6 months-i walked-no help-just> >stood and starting walking... of course everyone was quite impressed

> >with my new found skills....now as a 47 year old flatbacker- i have> >often wondered if skipping the crawl stage-and walking so young...it> >might have played a role in my scoliosis.....maybe i am way off the

> >mark.....just thought i would see if anyone else

on here was an early> >walker?> >>> >> >> >> >>

[Guest guest]

No, sorry......the other centers were not listed. I would try calling the Project Mgr or Study Coordinator for that info.

Sue Zorn

From: Peggy Ticconi <pticconi63@...> Sent: Monday, September 5, 2011 6:03 PMSubject: Re: Scoliosis Research Study at Washington University

Do you know the names of the other four spine centers that are participating?Peggy

On Mon, Sep 5, 2011 at 5:15 PM, Sue Zorn <smzorn@...> wrote:

Hi Everyone -

I have some proactive, good news to share.

Washington University in St. Louis is participating in a research study entitled.......A Multicenter Prospective Study of Quality of Life in Adult Scoliosis. This study is sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS) which is part of the National Institute for Health (NIH). The purpose of the study is to evaluate the effectiveness of nonsurgical and surgical treatments in patients with adult symptomatic lumbar scoliosis and to identify important factors related to patient reported outcomes (such as pain, activity, appearance, etc).

There are 5 spine centers in the US participating the study. Approximately 93 participants will be enrolled at Washington University. There will be a total of 300 participants enrolled by the five centers.

Dr. Bridwell (my Doctor ) and Dr. Lawrence Lenke at Washington University are co-investigators for this study. Dr. Lenke is the designer of surgical instrumentation manufactured by Medtronic Sofamor Danek. This instrumentation may be used in the surgery of some of the patients being recruited for this study.

I was asked to enroll in the study on August 1st during my first visit with my future surgeon, Dr. Bridwell. This is an Observational and Randomized study in which they will be enrolling patients over a five-year period. All participants will be in the study for at least two years. Participants are reimbursed for their time.

For additional information contact either Baldus, Project Manager at 314-747-2655 or baldusc@... or Azeem Ahmad, Study Coordinator, at 314-747-2817 or admada@....

I am returning the end of this week for my 2nd visit with Dr Bridwell with tentative surgery date the end of Sept.

I'm glad to be able to share this important news!

Sue Zorn

From: <elizabethrgonzalez@...> Sent: Sunday, September 4, 2011 3:37 PMSubject: Re: just throwing this out there..

Hi, Kathy --That's a good idea. tends to know about everything that's happening anywhere re scoliosis. (She ran one of the first online groups I joined, before several of us decided we needed a specific flatback group. Later she also participated in this group, but I don't think she does anymore. It's nice to know someone from the old days whom you can still find online somewhere! I've lost track of so many folks, including the now-famous Mina.)I think the member who wrote to us about early walking was just trying to find out if there was any correlation. Many of us with special situations have checked with others to see if the same thing might apply to them. This reflects how little we know about what conditions or circumstances relate to the development of scoliosis. The research money has historically gone chiefly to spinal surgeons -- NOT to that brave and

commmendable handful of investigators who have spent a lifetime trying to get any clue at all to the cause(s) (and thus, perhaps, the prevention) of this hugely life-altering spinal deformity. Similarly, we have no substantial body of longitudinal data on sixty-plus years of scoliosis treatment for which we, and a few of our mothers, have been lifelong guinea pigs. The "data," such as it is, shows up only when a couple hundred of us start showing up at varioius surgeons' offices with some new disaster such as flatback syndrome. Once the surgeons compare notes at enough annual meetings to realiza that this is a general phenomenon, not an isolated rarity, and once they finally go public with the information -- a process that can take 10-20 years or longer--they may already be dealing with the next large=scale iatrogenic calamity resulting from yet another "state-of-the-art" surgical technique or

"new and improved" edition of spinal hardware. Fortunately the news that Luque rods were also dangerous in terms of encouraging flatback syndrome came considerably faster than the initial bombshell concerning the Harrington rod. Sadly, we are only just beginning to consider whether the FDA should be keeping an eye on various types of spinal hardware (not to mention other implants, such as certain cardiac valves, which have damaged people). There is no mandatory let alone uniform system for reporting problems related to scoliosis surgery. It's important to realize that such a system would not necessarily help patients, since problems tend to show up only over the long term, when the damage is already done -- but if some of these reforms were instituted, at least we might have a substantial body of data to consult for knowlede of how scoliosis patients in general have fared in life. We don't know the causes, the

possible "cures," the natural history of treated and untreated scoliosis -- we basically know nothing. We have a major original deformity, scoliosis, which has been reported since antiquity, yet it is still a gigantic mystery to humankind. I suspect that when we reach out to one another with these occasional anecdotal queries -- "Did you have early osteoporosis too?" "Have you been diagnosed with narcolepsy or some other sleep disorder?" "Were you early/late with such-and-such developmental milestone?" we are probably hoping beyond hope that we may stumble on a signficant clue somewhere even in the absence of methodical scientific research.Best,-- , KATHY MIXON <kathyinbk@...>

wrote:>> - I don't really get the corrolation with the early walking BUT...I found your last post interesting. My original scoliosis "S" curve was 81 degrees.  I also was somewhat late with menarche (1 month shy of my 16th BD)...and I was COMPLETELY done with menopause by my 45th BD. My menoppause started & ended so quickly that I made them check me for cancer. Thank God it was all clear. Early menopause does not run in my family though. Both of my sister have scoliosis but only very slight curves & are currently going through nightmare menopause(s). Things that make me go hmmmmm. I'll ask R. that works at UCSF if she has heard anything new about the study.................................................Kathy> > > From: Sue

Zorn <smzorn@...>> " " < >> Sent: Thursday, September 1, 2011 11:41 AM> Subject: Re: just throwing this out there..> > > Â > My Mom was 25 when I was born.> Â > Â Â Â Sue Z.> > > From: <elizabethrgonzalez@...>> > >

>Sent: Thursday, September 1, 2011 6:35 AM> >Subject: Re: just throwing this out there..> >> >> >Â > >These posts are very interesting. My son was a very early walker but has> >no scoliosis. I'm pretty sure I crawled as much as the average baby, > >but -- probably neither here nor there -- I started talking rather late.> >My mother said my brother and I both were late to talk, and when we did> >finally have something to say, we said it in complete sentences. I have> >scoliosis; he doesn't. Since we did start talking, neither of us has> >stopped.> >> >Has anyone heard anything about that big study Medtronic was supposed to> >be sponsoring, the one that was going to use the huge archives in Salt> >Lake City to examine the genetics/genesis of scoliosis?>

>> >It amazes me that we still have nary a clue what went wrong. As a group,> >we do seem to show up in this or that isolated research study as having> >other distinct abnormalities, such as problems with vestibular balance> >and a tendency toward (if I'm not mistaken) certain connective tissue> >disorders.> >> >For what it's worth, I had a slightly late menarche and a somewhat early> >menopause. (Unfortunately my internist misread a lab result and told me> >I was definitely NOT going through menopause, so I spent a year thinking> >I was losing my mind.)> >> >Here's another far-out speculative question: How old was your mom when> >she had you? My mother was 41.> >> >Best,> >> >> >>> >> I was a late walker at 17 months and late for onset of puberty. My> >scoliosis appeared when I was 16 years old and I had surgery when I was> >17. My middle son has a mild curvature that we are monitoring, he> >walked at 13 months, a very average age to start walking. Just FYI.> >>> >>> >>> >> Jeanne> >>> >>> >>> >> From: > >[mailto: ] On Behalf Of Sue Zorn> >> Sent: Sunday, August 28, 2011 10:12 PM> >> > >> Subject: Re: just throwing this out there..> >>> >>> >>> >>> >>> >> HI Everyone -> >>> >>> >>> >> I walked at 8 months.............and have adult on-set scoliosis> >apparently from Degenerative Disc Disease. This is first time I have> >heard about this theory of a connection between early walking & > >scoliosis.> >>> >>>

>>> >> Sue Z.> >>> >>> >>> >> From: Izarah Star izarahstar@> >> > >> Sent: Saturday, August 27, 2011 4:03 AM> >> Subject: just throwing this out there..> >>> >>> >>> >>> >>> >>> >>> >>> >> i was one of those babies who never crawled (which is a huge> >milestone-or so i am told)- at just under 6 months-i walked-no help-just> >stood and starting walking... of course everyone was quite impressed> >with my new found skills....now as a 47 year old flatbacker- i

have> >often wondered if skipping the crawl stage-and walking so young...it> >might have played a role in my scoliosis.....maybe i am way off the> >mark.....just thought i would see if anyone else on here was an early> >walker?> >>> >> >> >> >>

[Guest guest]

If you go to the University's website, they list all the clinical trials. The

participating institutions are Northwestern, NYU, University of Virginia,

University of Louisville, land Spine Center, HSS in NY, Dartmouth-Hitcock in

New Hampshire and Toronto Western Hospital. It also gives patient criteria and

exclusions. Prior thoracic or lumbar fusion is an exclusion, so I am assuming

anyone who already had some type of scoliosis surgery is excluded.

> >>>> >>

> >>>> >> I was a late walker at 17 months and late for onset of puberty. My

> >>>> >scoliosis appeared when I was 16 years old and I had surgery when I was

> >>>> >17. My middle son has a mild curvature that we are monitoring, he

> >>>> >walked at 13 months, a very average age to start walking. Just FYI.

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> Jeanne

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> From:

> >>>> >[mailto: ] On Behalf Of Sue Zorn

> >>>> >> Sent: Sunday, August 28, 2011 10:12 PM

> >>>> >>

> >>>> >> Subject: Re: just throwing this out there..

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> HI Everyone -

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> I walked at 8 months.............and have adult on-set scoliosis

> >>>> >apparently from Degenerative Disc Disease. This is first time I have

> >>>> >heard about this theory of a connection between early walking &

> >>>> >scoliosis.

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> Sue Z.

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> From: Izarah Star izarahstar@

> >>>> >>

> >>>> >> Sent: Saturday, August 27, 2011 4:03 AM

> >>>> >> Subject: just throwing this out there..

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >>

> >>>> >> i was one of those babies who never crawled (which is a huge

> >>>> >milestone-or so i am told)- at just under 6 months-i walked-no help-just

> >>>> >stood and starting walking... of course everyone was quite impressed

> >>>> >with my new found skills....now as a 47 year old flatbacker- i have

> >>>> >often wondered if skipping the crawl stage-and walking so young...it

> >>>> >might have played a role in my scoliosis.....maybe i am way off the

> >>>> >mark.....just thought i would see if anyone else on here was an early

> >>>> >walker?

> >>>> >>

> >>>> >

> >>>> >

> >>>> >

> >>>> >

> >>>>

> >>>

> >>>

> >>>

> >>>

> >

> >

> >

> >

>

[Guest guest]

Hi, Sue --

Thanks for the interesting information.

I'll be sure to look into this further, assuming more info. is

available, but maybe you could tell us: Does this study deal only with

adult scoliosis, or does it include adults with iatrogenic flatback

syndrome and other problems secondary to previous scoliosis treatment?

Also, " adult scoliosis " often is used to refer to adult-onset scoliosis.

In this case, is that what they mean, or are they including people who

developed idiopathic scoliosis in adolescence

Best,

> >> >>

> >> >> I was a late walker at 17 months and late for onset of puberty.

My

> >> >scoliosis appeared when I was 16 years old and I had surgery when

I was

> >> >17. My middle son has a mild curvature that we are monitoring, he

> >> >walked at 13 months, a very average age to start walking. Just

FYI.

> >> >>

> >> >>

> >> >>

> >> >> Jeanne

> >> >>

> >> >>

> >> >>

> >> >> From:

> >> >[mailto: ] On Behalf Of Sue

Zorn

> >> >> Sent: Sunday, August 28, 2011 10:12 PM

> >> >>

> >> >> Subject: Re: just throwing this out there..

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >> HI Everyone -

> >> >>

> >> >>

> >> >>

> >> >> I walked at 8 months.............and have adult on-set scoliosis

> >> >apparently from Degenerative Disc Disease. This is first time I

have

> >> >heard about this theory of a connection between early walking &

> >> >scoliosis.

> >> >>

> >> >>

> >> >>

> >> >> Sue Z.

> >> >>

> >> >>

> >> >>

> >> >> From: Izarah Star izarahstar@

> >> >>

> >> >> Sent: Saturday, August 27, 2011 4:03 AM

> >> >> Subject: just throwing this out there..

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >> i was one of those babies who never crawled (which is a huge

> >> >milestone-or so i am told)- at just under 6 months-i walked-no

help-just

> >> >stood and starting walking... of course everyone was quite

impressed

> >> >with my new found skills....now as a 47 year old flatbacker- i

have

> >> >often wondered if skipping the crawl stage-and walking so

young...it

> >> >might have played a role in my scoliosis.....maybe i am way off

the

> >> >mark.....just thought i would see if anyone else on here was an

early

> >> >walker?

> >> >>

> >> >

> >> >

> >> >

> >> >

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

HI -

The inclusion criteria for the study is Adults 40 - 80 yrs of age with a double major or thoracolumbar/lumbar scoliosis with a minimum Cobb angle of 30 degrees. No prior spine fusion surgery in the thoracic or lumbar spine.

Hope this is of some value............Sue Z.

From:

Sent: Thursday, September 08, 2011 4:17 PM

Subject: Re: Scoliosis Research Study at Washington University

Hi, Sue --Thanks for the interesting information.I'll be sure to look into this further, assuming more info. isavailable, but maybe you could tell us: Does this study deal only withadult scoliosis, or does it include adults with iatrogenic flatbacksyndrome and other problems secondary to previous scoliosis treatment?Also, "adult scoliosis" often is used to refer to adult-onset scoliosis.In this case, is that what they mean, or are they including people whodeveloped idiopathic scoliosis in adolescenceBest,> >> >>> >> >> I was a late walker at 17 months and late for onset of puberty.My> >> >scoliosis appeared when I was 16 years old and I had surgery whenI was> >> >17. My middle son has a mild curvature that we are monitoring, he> >> >walked at 13 months, a very average age to start walking. JustFYI.> >> >>> >> >>> >> >>> >> >> Jeanne> >> >>> >> >>> >> >>> >> >> From: > >> >[mailto: ] On Behalf Of SueZorn> >> >> Sent: Sunday, August 28, 2011 10:12 PM> >> >> > >> >> Subject: Re: just throwing this out there..> >> >>> >> >>> >> >>> >> >>> >> >>> >> >> HI Everyone -> >> >>> >> >>> >> >>> >> >> I walked at 8 months.............and have adult on-set scoliosis> >> >apparently from Degenerative Disc Disease. This is first time Ihave> >> >heard about this theory of a connection between early walking & > >> >scoliosis.> >> >>> >> >>> >> >>> >> >> Sue Z.> >> >>> >> >>> >> >>> >> >> From: Izarah Star izarahstar@> >> >> > >> >> Sent: Saturday, August 27, 2011 4:03 AM> >> >> Subject: just throwing this out there..> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >> i was one of those babies who never crawled (which is a huge> >> >milestone-or so i am told)- at just under 6 months-i walked-nohelp-just> >> >stood and starting walking... of course everyone was quiteimpressed> >> >with my new found skills....now as a 47 year old flatbacker- ihave> >> >often wondered if skipping the crawl stage-and walking soyoung...it> >> >might have played a role in my scoliosis.....maybe i am way offthe> >> >mark.....just thought i would see if anyone else on here was anearly> >> >walker?> >> >>> >> >> >> >> >> >> >> >> >>> >> >> >> >> >>