Re: NIH Sponsors Major Clinical Study of Adult Scoliosis

[Guest guest]

Here's a similar news release from one of the other five centers involved in the NIH study. >> I found this while browsing at the Northwestern Memorial Hospital> (Chicago) website. I haven't yet found out which other centers are> involved across the US. It's interesting that the study focuses on> scoliosis per se. I would think it might be a challenge to find lots of> adults with medically significant but previously untreated scoliosis. If> treated patients are included, that has to mean thousands of us with> scoliosis and iatrogenic flatback syndrome. Flatback is, in fact, a> major interest of Northwestern's neurological surgeons, and they have> done untold numbers of revision surgeries over the years (including> operations performed on -- in chronological order -- longtime Feisty> members Donna Durgin, (that's me), and Maas).> I guess what surprised me most about this write-up was the mention of> comparing surgery with other treatments. We've heard so often that> surgery is the only acceptable treatment for patients with scoliosis of> 40-50 degrees or more -- the patients who would presumably be recruited> for a study like this.> > *> > Clinical Trial Hopes to Redefine Standard of Care for Scoliosis> PatientsNorthwestern Memorial only site in Illinois for the> NIH-sponsored trial Subscribe to our RSS feed> <http://www.nmh.org/cs/Satellite?c=eHA_Content_C & cid=1223924173132 & pagen\> ame=nm%2Fnm%2FTemplate%2FRSS_Feed_Wrapper> May 6, 2010> Chicago -> Researchers at Northwestern Memorial have launched the first-ever> National Institutes of Health-sponsored clinical trial for spinal> deformity. The trial will evaluate the effectiveness of surgical and> non-surgical treatments in people with adult scoliosis or curvature of> the spine. Researchers also hope to identify important factors related> to patient reported outcomes such as pain, activity and appearance.> > "Because of the trial's intensive focus on outcomes, our hope is> that the results will help drive decision-making for physicians and> surgeons that work with scoliosis patients," said Tyler Koski, MD> <http://www.nmh.org/nm/physician_koski_tyler_r_5761> , principal> investigator of the trial, neurosurgeon at Northwestern Memorial> Hospital and assistant professor of neurological surgery at > Northwestern University Feinberg School of Medicine.> > No studies currently exist for this group of patients. "There is a > significant unmet need in determining an evidence-based course of > treatment for adults with scoliosis," said Koski.> > Northwestern Memorial is the only hospital in Illinois and one of five> sites nationwide participating in the study. The trial will enroll > hundreds of patients over a five-year period and will follow the > subjects through their course of treatment, which may include surgery, > or non-surgical treatment options such as injections, medication, > physical therapy and exercise. Study participants will also be asked to > fill out periodic health questionnaires and will have routine X-rays as > part of their participation.> > Scoliosis, an abnormal curvature of the spine, affects approximately > six million people in the United States and can limit activity, cause > debilitating pain, reduce respiratory function and diminish self-esteem.> > "It's important for physicians to address the emotional and > behavioral issues that affect patients with scoliosis as well as other > spinal deformities," said Koski, who started a support group for > patients that meets every other month at the hospital.> > `We've seen patients really connect with one-another, and> believe the support group to be a key part of every patients> treatment," adds Koski.> > For more information about the clinical trial call 312-695-0482.>

[Guest guest]

Thank you for this. My 22 yo has a 40 degree curve and doing pt. I forwarded

this to her.

Peri

> >

> > I found this while browsing at the Northwestern Memorial Hospital

> > (Chicago) website. I haven't yet found out which other centers are

> > involved across the US. It's interesting that the study focuses on

> > scoliosis per se. I would think it might be a challenge to find lots

> of

> > adults with medically significant but previously untreated scoliosis.

> If

> > treated patients are included, that has to mean thousands of us with

> > scoliosis and iatrogenic flatback syndrome. Flatback is, in fact, a

> > major interest of Northwestern's neurological surgeons, and they have

> > done untold numbers of revision surgeries over the years (including

> > operations performed on -- in chronological order -- longtime Feisty

> > members Donna Durgin, (that's me), and

> Maas).

> > I guess what surprised me most about this write-up was the mention of

> > comparing surgery with other treatments. We've heard so often that

> > surgery is the only acceptable treatment for patients with scoliosis

> of

> > 40-50 degrees or more -- the patients who would presumably be

> recruited

> > for a study like this.

> >

> > *

> >

> > Clinical Trial Hopes to Redefine Standard of Care for Scoliosis

> > PatientsNorthwestern Memorial only site in Illinois for the

> > NIH-sponsored trial Subscribe to our RSS feed

> >

> <http://www.nmh.org/cs/Satellite?c=eHA_Content_C & cid=1223924173132 & pagen\

> \

> > ame=nm%2Fnm%2FTemplate%2FRSS_Feed_Wrapper> May 6, 2010

> > Chicago -

> > Researchers at Northwestern Memorial have launched the first-ever

> > National Institutes of Health-sponsored clinical trial for spinal

> > deformity. The trial will evaluate the effectiveness of surgical and

> > non-surgical treatments in people with adult scoliosis or curvature

> of

> > the spine. Researchers also hope to identify important factors

> related

> > to patient reported outcomes such as pain, activity and appearance.

> >

> > " Because of the trial's intensive focus on outcomes, our hope is

> > that the results will help drive decision-making for physicians and

> > surgeons that work with scoliosis patients, " said Tyler Koski, MD

> > <http://www.nmh.org/nm/physician_koski_tyler_r_5761> , principal

> > investigator of the trial, neurosurgeon at Northwestern Memorial

> > Hospital and assistant professor of neurological surgery at

> > Northwestern University Feinberg School of Medicine.

> >

> > No studies currently exist for this group of patients. " There is a

> > significant unmet need in determining an evidence-based course of

> > treatment for adults with scoliosis, " said Koski.

> >

> > Northwestern Memorial is the only hospital in Illinois and one of

> five

> > sites nationwide participating in the study. The trial will enroll

> > hundreds of patients over a five-year period and will follow the

> > subjects through their course of treatment, which may include surgery,

> > or non-surgical treatment options such as injections, medication,

> > physical therapy and exercise. Study participants will also be asked

> to

> > fill out periodic health questionnaires and will have routine X-rays

> as

> > part of their participation.

> >

> > Scoliosis, an abnormal curvature of the spine, affects approximately

> > six million people in the United States and can limit activity, cause

> > debilitating pain, reduce respiratory function and diminish

> self-esteem.

> >

> > " It's important for physicians to address the emotional and

> > behavioral issues that affect patients with scoliosis as well as other

> > spinal deformities, " said Koski, who started a support group for

> > patients that meets every other month at the hospital.

> >

> > `We've seen patients really connect with one-another, and

> > believe the support group to be a key part of every patients

> > treatment, " adds Koski.

> >

> > For more information about the clinical trial call 312-695-0482.

> >

>

[Guest guest]

Hey! That's my surgeon

Dr. Koski is awesome, in my opinion. He was very compassionate and gave me a

lot of time in the office when I came in with sometimes 20-30 questions. He

also wrote very long & detailed letters to my MS neurologist and primary care

doctor to coordinate my care. My neurologist was very impressed, and could tell

that the letter was written by him instead of just being some form letter

written by a medical transcriptionist (had too many details).

Anyways, I am already part of an Adult Spinal Deformities study through

Northwestern, and I have been ever since my surgery in 2007. So I'm not sure if

this is part of that, or perhaps an offshoot, or something totally different.

Thanks for posting it though! It's nice to see my surgeon's name and know that

he's continuing to do lots of research into our condition.

>

> I found this while browsing at the Northwestern Memorial Hospital

> (Chicago) website. I haven't yet found out which other centers are

> involved across the US. It's interesting that the study focuses on

> scoliosis per se. I would think it might be a challenge to find lots of

> adults with medically significant but previously untreated scoliosis. If

> treated patients are included, that has to mean thousands of us with

> scoliosis and iatrogenic flatback syndrome. Flatback is, in fact, a

> major interest of Northwestern's neurological surgeons, and they have

> done untold numbers of revision surgeries over the years (including

> operations performed on -- in chronological order -- longtime Feisty

> members Donna Durgin, (that's me), and Maas).

> I guess what surprised me most about this write-up was the mention of

> comparing surgery with other treatments. We've heard so often that

> surgery is the only acceptable treatment for patients with scoliosis of

> 40-50 degrees or more -- the patients who would presumably be recruited

> for a study like this.

>

> *

>

> Clinical Trial Hopes to Redefine Standard of Care for Scoliosis

> PatientsNorthwestern Memorial only site in Illinois for the

> NIH-sponsored trial Subscribe to our RSS feed

> <http://www.nmh.org/cs/Satellite?c=eHA_Content_C & cid=1223924173132 & pagen\

> ame=nm%2Fnm%2FTemplate%2FRSS_Feed_Wrapper> May 6, 2010

> Chicago -

> Researchers at Northwestern Memorial have launched the first-ever

> National Institutes of Health-sponsored clinical trial for spinal

> deformity. The trial will evaluate the effectiveness of surgical and

> non-surgical treatments in people with adult scoliosis or curvature of

> the spine. Researchers also hope to identify important factors related

> to patient reported outcomes such as pain, activity and appearance.

>

> " Because of the trial's intensive focus on outcomes, our hope is

> that the results will help drive decision-making for physicians and

> surgeons that work with scoliosis patients, " said Tyler Koski, MD

> <http://www.nmh.org/nm/physician_koski_tyler_r_5761> , principal

> investigator of the trial, neurosurgeon at Northwestern Memorial

> Hospital and assistant professor of neurological surgery at

> Northwestern University Feinberg School of Medicine.

>

> No studies currently exist for this group of patients. " There is a

> significant unmet need in determining an evidence-based course of

> treatment for adults with scoliosis, " said Koski.

>

> Northwestern Memorial is the only hospital in Illinois and one of five

> sites nationwide participating in the study. The trial will enroll

> hundreds of patients over a five-year period and will follow the

> subjects through their course of treatment, which may include surgery,

> or non-surgical treatment options such as injections, medication,

> physical therapy and exercise. Study participants will also be asked to

> fill out periodic health questionnaires and will have routine X-rays as

> part of their participation.

>

> Scoliosis, an abnormal curvature of the spine, affects approximately

> six million people in the United States and can limit activity, cause

> debilitating pain, reduce respiratory function and diminish self-esteem.

>

> " It's important for physicians to address the emotional and

> behavioral issues that affect patients with scoliosis as well as other

> spinal deformities, " said Koski, who started a support group for

> patients that meets every other month at the hospital.

>

> `We've seen patients really connect with one-another, and

> believe the support group to be a key part of every patients

> treatment, " adds Koski.

>

> For more information about the clinical trial call 312-695-0482.

>

[Guest guest]

I Googled him and came across a photo. He looked awfully familiar. I

think he was one of the fellows working under Ondra the year I had my

multiple revisions at Northwestern. That was such a groggy, surreal time

for me that I couldn't rememember whether I like him or not. But I ended

up liking most of them, so I expect to have a good experience when I

have to go back and get checked and see him at the office. (I don't have

high hopes for any advice or guidance regarding my recently acquired

slouching posture -- I know he didn't have much to say about yours --

but maybe by now he will have come across some other reports on this or

will have gotten word of some new theory. I know I " couldn't " be

reverting to my flatbacked condition, at least not with this much

hardware all the way up my back. But there must be some explanation. And

if we perpetual guinea pigs don't pipe up about this problem we're

starting to manifest, who will?)

Anyway, I'm prepared to have good feelings about Koski until given

grounds to feel otherwise!

Good for you, consenting to be in that study. Very public-spirited. I

hope you learn something helpful that makes you feel it was worthwhile

for you personally. At the time I had my surgery, a charming researcher

from the U.K. was doing a gait study, and I said sure I'd participate. I

walked around a gym a couple of times being tracked by various

intersecting laser beams in bright colors. Unfortunately I never got to

the point of recovery after my surgery where I felt like going back for

the follow-up, so I never did, shame on me.

Best,

> >

> > I found this while browsing at the Northwestern Memorial Hospital

> > (Chicago) website. I haven't yet found out which other centers are

> > involved across the US. It's interesting that the study focuses on

> > scoliosis per se. I would think it might be a challenge to find

lots of

> > adults with medically significant but previously untreated

scoliosis. If

> > treated patients are included, that has to mean thousands of us with

> > scoliosis and iatrogenic flatback syndrome. Flatback is, in fact, a

> > major interest of Northwestern's neurological surgeons, and they

have

> > done untold numbers of revision surgeries over the years (including

> > operations performed on -- in chronological order -- longtime Feisty

> > members Donna Durgin, (that's me), and

Maas).

> > I guess what surprised me most about this write-up was the mention

of

> > comparing surgery with other treatments. We've heard so often that

> > surgery is the only acceptable treatment for patients with scoliosis

of

> > 40-50 degrees or more -- the patients who would presumably be

recruited

> > for a study like this.

> >

> > *

> >

> > Clinical Trial Hopes to Redefine Standard of Care for Scoliosis

> > PatientsNorthwestern Memorial only site in Illinois for the

> > NIH-sponsored trial Subscribe to our RSS feed

> >

<http://www.nmh.org/cs/Satellite?c=eHA_Content_C & cid=1223924173132 & pagen\

\

> > ame=nm%2Fnm%2FTemplate%2FRSS_Feed_Wrapper> May 6, 2010

> > Chicago -

> > Researchers at Northwestern Memorial have launched the first-ever

> > National Institutes of Health-sponsored clinical trial for spinal

> > deformity. The trial will evaluate the effectiveness of surgical

and

> > non-surgical treatments in people with adult scoliosis or curvature

of

> > the spine. Researchers also hope to identify important factors

related

> > to patient reported outcomes such as pain, activity and appearance.

> >

> > " Because of the trial's intensive focus on outcomes, our hope is

> > that the results will help drive decision-making for physicians and

> > surgeons that work with scoliosis patients, " said Tyler Koski, MD

> > <http://www.nmh.org/nm/physician_koski_tyler_r_5761> , principal

> > investigator of the trial, neurosurgeon at Northwestern Memorial

> > Hospital and assistant professor of neurological surgery at

> > Northwestern University Feinberg School of Medicine.

> >

> > No studies currently exist for this group of patients. " There is a

> > significant unmet need in determining an evidence-based course of

> > treatment for adults with scoliosis, " said Koski.

> >

> > Northwestern Memorial is the only hospital in Illinois and one of

five

> > sites nationwide participating in the study. The trial will enroll

> > hundreds of patients over a five-year period and will follow the

> > subjects through their course of treatment, which may include

surgery,

> > or non-surgical treatment options such as injections, medication,

> > physical therapy and exercise. Study participants will also be asked

to

> > fill out periodic health questionnaires and will have routine X-rays

as

> > part of their participation.

> >

> > Scoliosis, an abnormal curvature of the spine, affects approximately

> > six million people in the United States and can limit activity,

cause

> > debilitating pain, reduce respiratory function and diminish

self-esteem.

> >

> > " It's important for physicians to address the emotional and

> > behavioral issues that affect patients with scoliosis as well as

other

> > spinal deformities, " said Koski, who started a support group for

> > patients that meets every other month at the hospital.

> >

> > `We've seen patients really connect with one-another, and

> > believe the support group to be a key part of every patients

> > treatment, " adds Koski.

> >

> > For more information about the clinical trial call 312-695-0482.

> >

>