research

[Guest guest]

Thanks . This is very true. We can

use good science to our benefit.

s. fuchs dc

From:

[mailto: ] On Behalf Of Seitz

Sent: Friday, March 28, 2008 9:51

AM

Subject: research

Sharon, et al

From

Chestnut:

“We need to grow

up and start conducting science in a mature fashion. We need to stop

using science in an attempt to justify ourselves and start using science for

what it is designed – to discover. We need to start asking how and why

questions and stop asking if questions. Studies to determine IF

chiropractic reduces pain or disease will never tell us WHY or HOW chiropractic

works. Aren’t these the really important questions? Wouldn’t

knowing the effects of the adjustment be more useful than knowing the effect of

the adjustment on a single condition?...”

“…There is a great

deal of information available regarding these questions; unfortunately, much of

it is in the neuroscientific literature, which few chiropractors read.

Perhaps the most interesting of all this information has to do with the

afferent neurological pathways involving mechanoreceptors and nociceptors and

their influence on the cerebellum, the vestibular nucleus and other cranial

nuclei, the limbic system, the sympathetic chain ganglia, the descending

inhibitory pathways for pain, the hypothalamic – pituitary – adrenal axis and

the cortical and subcortical areas for cognition, emotion, and learning….”

From “The 14

Foundational Premises for the Scientific and Philosophical Validation of the

Chiropractic Wellness Paradigm”. A thin book with lots of good stuff,

chock full of research references!

Seitz, DC

Tuality Physicians

No virus

found in this outgoing message.

Checked by AVG.

Version: 7.5.519 / Virus Database: 269.22.1/1348 - Release Date: 3/28/2008

10:58 AM

[Guest guest]

I have wondered if ppl with achalasia also have some type of

neurological deformity/problem/condition as well. I know my son has

several.

[Guest guest]

Ann wrote:

Wouldn't they need the

spinal cord, vagus nerve, etc?

Depends on what they want to consider and test. I doubt many

researchers think there is a connection with achalasia and the spine. I

know there are people that want to blame everything on some bump they

had to their spine but there isn't much science to back up a connection

to that kind of thing in primary achalasia, even in science theory. (I

say science theory because I distinguish between that and the theories

of many practitioners of various procedures that are not science

theories. Many of those  theories come from the philosophies of the

practices.)

It seems to most researchers that whatever is going on is local to the

esophagus. Any related problem with the vagus nerve is probably also

local to the esophagus.

Studying the esophagus does not mean that other parts of the body are

not studied, they can be studied separately or together with the

esophagus. But I don't think Isabella is ready to give them her spine.

notan

[Guest guest]

Indeed not, Notan! I think for the moment they got plenty of me: esophagus, half my stomach and my spleen. I think I've been more than generous -LOL-.

Love,

Isabella

Re: Research

Ann wrote:

Wouldn't they need the spinal cord, vagus nerve, etc?Depends on what they want to consider and test. I doubt many researchers think there is a connection with achalasia and the spine. I know there are people that want to blame everything on some bump they had to their spine but there isn't much science to back up a connection to that kind of thing in primary achalasia, even in science theory. (I say science theory because I distinguish between that and the theories of many practitioners of various procedures that are not science theories. Many of those theories come from the philosophies of the practices.)It seems to most researchers that whatever is going on is local to the esophagus. Any related problem with the vagus nerve is probably also local to the esophagus.Studying the esophagus does not mean that other parts of the body are not studied, they can be studied

separately or together with the esophagus. But I don't think Isabella is ready to give them her spine.notan

between 0000-00-00 and 9999-99-99 <hr size=1>Be a better friend, newshound, and know-it-all with Mobile. <a href= " http://us.rd./evt=51733/*http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " > Try it now.</a>

[Guest guest]

Dear Notan,

Thank you for replying. So, to sum up, it IS very valuable then for the researchers to be able to test the removed oesophagus on its own. That is reassuring to know. I don't know how other people feel about this subject, but I hope very much that in times not too far in the future, no-one will have to deal with this disease, as we have.

I think I am going to find a way to make it known that if I pop my clogs, my oesophagus will be donated so that it can be studied. My kidneys and various other bits will be disappearing to a greater cause anyway, so they might as well have that at the same time.

All the best from Ann XX

Wouldn't they need the spinal cord, vagus nerve, etc?Depends on what they want to consider and test. I doubt many researchers think there is a connection with achalasia and the spine. I know there are people that want to blame everything on some bump they had to their spine but there isn't much science to back up a connection to that kind of thing in primary achalasia, even in science theory. (I say science theory because I distinguish between that and the theories of many practitioners of various procedures that are not science theories. Many of those theories come from the philosophies of the practices.)It seems to most researchers that whatever is going on is local to the esophagus. Any related problem with the vagus nerve is probably also local to the esophagus.Studying the esophagus does not mean that other parts of the body are not studied, they can be studied

separately or together with the esophagus. But I don't think Isabella is ready to give them her spine.notan

for Good helps you make a difference

[Guest guest]

It would be cool to do a study to see if the Bariatric Advantage Line of supplements significantly impacts nutrient deficiencies as compared to a lower cost item such as Centrum

Rose, RD,LD

research

Good morning:

I have a unique opportunity to facilitate a research project for a masters dietetic student. She will be doing the research here in the surgical weight loss center. I am looking for research questions.. Any recommendations?

Thank you.

Beth Taschuk RD

Tristate Surgical Weight Loss Center

Looking for work? Get job alerts, employment information, career advice and job-seeking tools at AOL Find a Job.

[Guest guest]

Beth,

It is tough to come up with a great list of research questions without knowing a lot about the student’s goals, the requirements of the

program (i.e. whether the project is simply designed to give the student a taste for research vs. producing a publication quality study), the timeframe the student has to complete the project and the availability of any funding. I am going to assume that

as a Master’s candidate, the student probably wants to wrap up this project within a year (if not sooner). I doubt it would be feasible for the student to recruit new patients coming into your practice and look at any type of outcome measure, such as weight

loss, compliance, resolved co-morbidities, lab data, etc as the amount of time that would be needed to formulate the research question, develop materials/consents, receive IRB approval, recruit subjects and follow the subjects for a long enough period of time

post-operatively to find the data he/she is looking for will be significant.

I would recommend one of two different types of projects. The first would be the have the student work with data that your center has

already collected to help you develop a process improvement (after all, your center is investing the time and resources to train this student, his/her research should contribute to the program in some way). If your center is entering data into BOLD or another

database, you have a library worth of data that the student can mine from to look at questions such as rates of resolved co-morbidities by procedure, compliance with recommendations by demographics, percentage of weight lost and potentially regained by counseling

approach or compliance with follow-up, etc. The other type of project I would recommend would be a non-comparative study such as a focus group or survey that may be able to provide feedback on the perceived benefits of nutrition counseling on an individual

or group basis or the perceived effectiveness of different teaching tools or materials to improving compliance with post-op diet, supplementation and meeting weight loss and health goals. The student may also be interested in doing some sort of an evidence

analysis project looking at published work on the timing and frequency of nutrition counseling pre and post-operatively and weight loss results or rates of complication. It would add to our knowledge base if we knew whether particular behavioral therapies

are more effective than others in counseling this population, although I am not sure that there is much out there in the literature on this front. Any of these projects can likely be completed in a relatively short period of time.

Ultimately your practice and your student’s goals are going to guide what can and can’t be done. Good luck, this can be a great opportunity

for enhancing your practice!!

Nadia Marzella MS, RD, LD/N

Center for Digestive and Metabolic Surgery at

Orlando Health

From:

[mailto: ] On Behalf Of

Beth Taschuk

Sent: Tuesday, February 17, 2009 11:10 AM

Subject: research

Good morning:

I have a unique opportunity to facilitate a research project for a masters dietetic student. She will be doing the research here in the surgical weight loss center.

I am looking for research questions.. Any recommendations?

Thank you.

Beth Taschuk RD

Tristate Surgical

Weight

Loss Center

This e-mail message and any attached files are confidential and are intended solely for the use of the addressee(s) named above. If you are not the intended recipient, any review, use, or distribution of this e-mail

message and any attached files is strictly prohibited.

This communication may contain material protected by Federal privacy regulations, attorney-client work product, or other privileges. If you have received this confidential communication in error, please notify the sender immediately by reply e-mail message

and permanently delete the original message. To reply to our email administrator directly, send an email to: postmaster@... .

If this e-mail message concerns a contract matter, be advised that no employee or agent is authorized to conclude any binding agreement on behalf of Orlando Health by e-mail without express written confirmation by an officer of the corporation. Any views or

opinions presented in this e-mail are solely those of the author and do not necessarily represent those of Orlando Health.

[Guest guest]

Hi Beth

Vitamin levels before and after gastric bypass

Comparison of differences in food diaries before and after weight loss surgery

Ciara

> From: Beth Taschuk <bethhanne@...>

> Subject: research

>

> Date: Tuesday, February 17, 2009, 11:09 AM

> Good morning:

> I have a unique opportunity to facilitate a research

> project for a masters dietetic student.  She will be doing

> the research here in the surgical weight loss center.  I

> am looking for research questions.. Any recommendations? 

> Thank you.

> Beth Taschuk RD

> Tristate Surgical Weight Loss Center

[Guest guest]

Thank you Nadia...

This certainly gives me a place to start.

I truly appreciate your time.

Beth

From: "Marzella, Nadia R." <nadia.marzella@...>" " < >Sent: Tuesday, February 17, 2009 1:15:51 PMSubject: RE: research

Beth,

It is tough to come up with a great list of research questions without knowing a lot about the student¢s goals, the requirements of the program (i.e. whether the project is simply designed to give the student a taste for research vs. producing a publication quality study), the timeframe the student has to complete the project and the availability of any funding. I am going to assume that as a Master¢s candidate, the student probably wants to wrap up this project within a year (if not sooner). I doubt it would be feasible for the student to recruit new patients coming into your practice and look at any type of outcome measure, such as weight loss, compliance, resolved co-morbidities, lab data, etc as the amount of time that would be needed to formulate the research question, develop materials/consents, receive IRB approval,

recruit subjects and follow the subjects for a long enough period of time post-operatively to find the data he/she is looking for will be significant.

I would recommend one of two different types of projects. The first would be the have the student work with data that your center has already collected to help you develop a process improvement (after all, your center is investing the time and resources to train this student, his/her research should contribute to the program in some way). If your center is entering data into BOLD or another database, you have a library worth of data that the student can mine from to look at questions such as rates of resolved co-morbidities by procedure, compliance with recommendations by demographics, percentage of weight lost and potentially regained by counseling approach or compliance with follow-up, etc. The other type of project I would recommend would be a non-comparative study such as a focus group or survey that may be able to

provide feedback on the perceived benefits of nutrition counseling on an individual or group basis or the perceived effectiveness of different teaching tools or materials to improving compliance with post-op diet, supplementation and meeting weight loss and health goals. The student may also be interested in doing some sort of an evidence analysis project looking at published work on the timing and frequency of nutrition counseling pre and post-operatively and weight loss results or rates of complication. It would add to our knowledge base if we knew whether particular behavioral therapies are more effective than others in counseling this population, although I am not sure that there is much out there in the literature on this front. Any of these projects can likely be completed in a relatively short period of time.

Ultimately your practice and your student¢s goals are going to guide what can and can¢t be done. Good luck, this can be a great opportunity for enhancing your practice!!

Nadia Marzella MS, RD, LD/N

Center for Digestive and Metabolic Surgery at Orlando Health

From: BariatricNutritionD ietitians [mailto:BariatricNu tritionDietitian sgroups (DOT) com] On Behalf Of Beth TaschukSent: Tuesday, February 17, 2009 11:10 AMbariatricnutritiond ietitiansSubject: [bariatricNutrition Dietitians] research

Good morning:

I have a unique opportunity to facilitate a research project for a masters dietetic student. She will be doing the research here in the surgical weight loss center. I am looking for research questions.. Any recommendations?

Thank you.

Beth Taschuk RD

Tristate Surgical Weight Loss Center

This e-mail message and any attached files are confidential and are intended solely for the use of the addressee(s) named above. If you are not the intended recipient, any review, use, or distribution of this e-mail message and any attached files is strictly prohibited.This communication may contain material protected by Federal privacy regulations, attorney-client work product, or other privileges. If you have received this confidential communication in error, please notify the sender immediately by reply e-mail message and permanently delete the original message. To reply to our email administrator directly, send an email to: postmaster@orlandoh ealth.com .If this e-mail message concerns a contract matter, be advised that no employee or agent is authorized to conclude any binding agreement on behalf of Orlando Health by e-mail without express written

confirmation by an officer of the corporation. Any views or opinions presented in this e-mail are solely those of the author and do not necessarily represent those of Orlando Health.

[Guest guest]

Thanks, -

In a message dated 10/29/2009 7:30:03 A.M. Eastern Daylight Time, randolrn@... writes:

,

The research efforts by Dr. , Kipps and others that is sponsered and funded by LRF/CIG is exactly what to happen with the money I donate for leukemia research. I will cont. to donate and if I have to make a decision when money is tight ( I hope to retire next yr) it will be LRF that gets my money.

Again, Thanks,

R.

Adks. NY

[Guest guest]

Wow you guys sound so cynical I tend to think the best of everyone, and

often get stepped on in the process, so maybe I think too nicely of people and

their intentions! I didn't get the same impression from the various messages.

I felt that docs were finally trying to assess how a patient is doing after

their surgery based on things other than the traditional " Wow your xrays look

fantastic - therefore you shouldn't be having any problems. Go have a nice

life! " To me, it seems that they are trying to take into account how the

patient perceives their quality of life. In my opinion, that's a good thing.

Upon reading your comments tho, I did notice how they phrased things and could

see how people could be disturbed at the idea of them teaching us coping skills.

Looking at it from a different angle tho, it seems to me that it could be a good

thing for a surgeon's office to try to better care for a person after their

revision. Oftentimes, it seems that they are only concerned with the physical

results they see on the xrays. If a person has pain or is frustrated by

increasing limitations, surgeons typically seem to wash their hands of taking

any responsibility for it or offering any other means of support. So my

impression is that this study is trying to take a step in that direction. Will

it end up helping us in the long run? I hope so. I also hope that I said

things clearly enough to convey what I'm trying to mean here!

Maybe I'm way off, but that's more the impressions I've gotten. I'm in a

longterm (20yr) study right now which may or may not be part of this. Dr Ondra

was heading up the Northwestern leg of the study, but it's a multicenter study.

I fill out paperwork at different time points and a lot of the questions ask how

I perceive my body image, if I think the surgery was worth it, etc.

>

> Hi ,

>

>

>

> I reread your email to Carolyn and her email in response. Her goals are very

> disturbing. To my mind, the idea that she can have anything useful to say to

> flatbackers to help us " cope " is pure arrogance. Also, that she and her ilk

> think it takes An MD or PhD to define " quality of life " and teach people how

> to achieve it is outrageous.

>

>

>

> These are the salient passages I noted in her email/study:

>

>

>

> 1) " The basic idea of what we are trying to do is look deeper at the

> outcomes of surgery for scoliosis in adult-onset and flatback-revised

> patients by getting at how different people appraise or think about quality

> of life and what is important.Quality of life is defined as positive " role

> performance, adaptability, and existential well-being. " Um, duh.

>

>

>

> 2) What can we teach patients that can improve their coping skills - what

> can we teach in a " group for folks with flatback syndrome? " I think a more

> relevant - and useful - question is what can we teach her? Plenty.

>

>

>

> 3) " Whereas physician reports of their results might indicate a good

> outcome, patient-reported outcomes sometimes indicate an inferior outcome

> following spine treatment. " As you say, , they should try living in

> our skin. What self-serving arrogance.

>

>

>

> You know, I went to see a surgeon in Denver, recommended to me by Dr.

> Boachie, because I was having hardware pain. He confidently took my history,

> looked at my scans and declared that Dr. Boachie had done a phenomenal job

> and that I was straight from the tip of my head to my toes. Did he discuss

> my pain? No. It seemed he was saying that I shouldn't have any, considering

> what a boffo job Dr. Boachie did. I mean, the guy was nice enough, but

> really, are Dr. Schwartz and her colleagues going by assessments such as

> his?

>

>

>

> Are you sure you want me to participate in your discussion with Carolyn????

>

>

>

> Yours,

>

> Andy

>

[Guest guest]

Hi ,

Thanks for bringing a positive attitude to

this matter. I confess I am a cynic!

I agree it would be wonderful if surgeons

directed their post-surgery (or pre-, for that matter) patients to other

services instead of declaring them a success and sending them off on their own.

I tried to do that by introducing Dr. Boachie to Pilates (Reformer, not mat). I

see now there are Pilates, yoga and yoga-lates classes at his hospital in Manhattan, so I’m

happy about that.

I’m curious – if you –

or any other Feisty member – had to give input to a person who wanted to

teach post-surgery coping skills, what would you suggest? I’ve been

mulling this over myself. As a psychotherapist, now retired, I used to offer

workshops to cope with chronic illness. I think this is a pretty standard

offering at most hospitals and health centers. Usually these workshops teach

talking (in the group and with other supportive people in your life) about what’s

bothering you, practical ways/resources to deal with problems/limitations (such

as sock aids, grippers, pain clinics/meds, physical therapy), and finding ways

to soothe yourself both physically and psychologically.

But my question is, what coping skills

would we suggest to flatbackers in particular?

If you or anyone has any ideas, I’d

appreciate very much if you posted them.

Many thanks – and thanks for

forgiving me my negativity!

Andy

Boulder CO

From:

[mailto: ] On Behalf Of rebeccamaas

Sent: Monday, December 07, 2009

5:04 PM

To:

Subject: Re:

Research

Wow you guys sound so cynical I tend to think the

best of everyone, and often get stepped on in the process, so maybe I think too

nicely of people and their intentions! I didn't get the same impression from

the various messages. I felt that docs were finally trying to assess how a

patient is doing after their surgery based on things other than the traditional

" Wow your xrays look fantastic - therefore you shouldn't be having any

problems. Go have a nice life! " To me, it seems that they are trying to

take into account how the patient perceives their quality of life. In my

opinion, that's a good thing.

Upon reading your comments tho, I did notice how they phrased things and could

see how people could be disturbed at the idea of them teaching us coping

skills. Looking at it from a different angle tho, it seems to me that it could

be a good thing for a surgeon's office to try to better care for a person after

their revision. Oftentimes, it seems that they are only concerned with the

physical results they see on the xrays. If a person has pain or is frustrated

by increasing limitations, surgeons typically seem to wash their hands of

taking any responsibility for it or offering any other means of support. So my impression

is that this study is trying to take a step in that direction. Will it end up

helping us in the long run? I hope so. I also hope that I said things clearly

enough to convey what I'm trying to mean here!

Maybe I'm way off, but that's more the impressions I've gotten. I'm in a

longterm (20yr) study right now which may or may not be part of this. Dr Ondra

was heading up the Northwestern leg of the study, but it's a multicenter study.

I fill out paperwork at different time points and a lot of the questions ask

how I perceive my body image, if I think the surgery was worth it, etc.

>

> Hi ,

>

>

>

> I reread your email to Carolyn and her email in response. Her goals are

very

> disturbing. To my mind, the idea that she can have anything useful to say

to

> flatbackers to help us " cope " is pure arrogance. Also, that she

and her ilk

> think it takes An MD or PhD to define " quality of life " and

teach people how

> to achieve it is outrageous.

>

>

>

> These are the salient passages I noted in her email/study:

>

>

>

> 1) " The basic idea of what we are trying to do is look deeper at the

> outcomes of surgery for scoliosis in adult-onset and flatback-revised

> patients by getting at how different people appraise or think about

quality

> of life and what is important.Quality of life is defined as positive

" role

> performance, adaptability, and existential well-being. " Um, duh.

>

>

>

> 2) What can we teach patients that can improve their coping skills - what

> can we teach in a " group for folks with flatback syndrome? " I

think a more

> relevant - and useful - question is what can we teach her? Plenty.

>

>

>

> 3) " Whereas physician reports of their results might indicate a good

> outcome, patient-reported outcomes sometimes indicate an inferior outcome

> following spine treatment. " As you say, , they should try living in

> our skin. What self-serving arrogance.

>

>

>

> You know, I went to see a surgeon in Denver,

recommended to me by Dr.

> Boachie, because I was having hardware pain. He confidently took my

history,

> looked at my scans and declared that Dr. Boachie had done a phenomenal job

> and that I was straight from the tip of my head to my toes. Did he discuss

> my pain? No. It seemed he was saying that I shouldn't have any,

considering

> what a boffo job Dr. Boachie did. I mean, the guy was nice enough, but

> really, are Dr. Schwartz and her colleagues going by assessments such as

> his?

>

>

>

> Are you sure you want me to participate in your discussion with

Carolyn????

>

>

>

> Yours,

>

> Andy

>

[Guest guest]

Andy,

Just from my perspective, I think you are exactly the person that needs to take part in that discussion. You are making very important statements regarding the doctors' perspective and the reality that revision patients live with on a daily basis. Doctors really need to live the experience before they can ever understand the issues. Just my two cents worth.\

Jeanne

Research

Hi ,

I reread your email to Carolyn and her email in response. Her goals are very disturbing. To my mind, the idea that she can have anything useful to say to flatbackers to help us “cope” is pure arrogance. Also, that she and her ilk think it takes An MD or PhD to define “quality of life” and teach people how to achieve it is outrageous.

These are the salient passages I noted in her email/study:

1) “The basic idea of what we are trying to do is look deeper at the outcomes of surgery for scoliosis in adult-onset and flatback-revised patients by getting at how different people appraise or think about quality of life and what is important…Quality of life is defined as positive “role performance, adaptability, and existential well-being.” Um, duh.

2) What can we teach patients that can improve their coping skills – what can we teach in a “group for folks with flatback syndrome?” I think a more relevant – and useful - question is what can we teach her? Plenty.

3) “Whereas physician reports of their results might indicate a good outcome, patient-reported outcomes sometimes indicate an inferior outcome following spine treatment.” As you say, , they should try living in our skin. What self-serving arrogance.

You know, I went to see a surgeon in Denver, recommended to me by Dr. Boachie, because I was having hardware pain. He confidently took my history, looked at my scans and declared that Dr. Boachie had done a phenomenal job and that I was straight from the tip of my head to my toes. Did he discuss my pain? No. It seemed he was saying that I shouldn’t have any, considering what a boffo job Dr. Boachie did. I mean, the guy was nice enough, but really, are Dr. Schwartz and her colleagues going by assessments such as his?

Are you sure you want me to participate in your discussion with Carolyn????

Yours,

Andy

[Guest guest]

Hi again,

You know, I’ve been thinking about

what exactly flatbackers would find helpful from the medical profession after

surgery. This is what I’ve come up with so far:

Referral

to our online group

Referral

to a trained pain specialist – doctors not afraid to prescribe

opiates and other serious pain meds

Referral

to warm-water pool therapy – and to make it ongoing and free or

cheap, and/or

Referral

to physical therapists specifically trained to help people with extensive

fusions and remaining curvatures – and to make it ongoing and free

or cheap

Referral

to a cranio-sacral (or similarly gentle) massage therapist – and to

make it ongoing and free or cheap

Referral

to psychotherapist specifically trained to help people with chronic

illness – and to make it ongoing and free or cheap.

What else???

Yours,

Andy Stanton

Boulder CO

[Guest guest]

And a free shotgun trial for me to use on the next doctor to look at xrays or my nape to butt scars and say "arent they beautiful? they did a wonderful job!"

Sorry Andy - all good ideas

We have "free" OT, PT , hydrotherapy and assorted other alternative therapies like acupuncture, in the UK but the waiting lists are monumental and you still can only have a few sessions because you have to make room for the next victim... sorry, patient. After that you are either on your own to find your own private practitioner and hope they don't charge too much and that they are legit as such things are not regulated yet!

From: Andy Stanton <andystanton@...> Sent: Wed, December 9, 2009 2:32:12 AMSubject: RE: Research

Hi again,

You know, I’ve been thinking about what exactly flatbackers would find helpful from the medical profession after surgery. This is what I’ve come up with so far:

Referral to our online group

Referral to a trained pain specialist – doctors not afraid to prescribe opiates and other serious pain meds

Referral to warm-water pool therapy – and to make it ongoing and free or cheap, and/or

Referral to physical therapists specifically trained to help people with extensive fusions and remaining curvatures – and to make it ongoing and free or cheap

Referral to a cranio-sacral (or similarly gentle) massage therapist – and to make it ongoing and free or cheap

Referral to psychotherapist specifically trained to help people with chronic illness – and to make it ongoing and free or cheap.

What else???

Yours,

Andy Stanton

Boulder CO

[Guest guest]

Andy,

I agree wholeheartedly!!

Having an online support group is a wonderful tool. Doctors/surgeons are good

at what they do in the OR, but they HAVEN'T been thru the surgery themselves or

had to live in our bodies. They don't have all the tips and wisdom that comes

from sharing experiences with people who have lived thru these surgeries. I was

able to prepare for my revisions much more thoroughly because of these groups.

It would be fantastic if somehow surgeons were able to refer their patients to

us before their revisions. I can't imagine going thru that surgery without

knowing all I learned from others who had done it before me.

The pain specialist would be a wonderful asset. While my surgeon was willing to

prescribe wonderfully adequate pain meds for up to a year after revision (which

was fine for me, but might not be enough for others), I've heard stories from

people whose docs aren't so helpful. By the time they realize that their

surgeon isn't going to help them with finding support with pain, it can be a

long & challenging process to find and establish a relationship with a pain

specialist - especially one who understands that you are not just " another " back

surgery patient.

Pool therapy would be great. Some surgeons are more strict with how they view

physical therapy (including pool therapy) after revision. Some say that it's

great to try after 6-12weeks, others may want their patients to wait 6-12 months

before doing therapy to make sure that the fusion is solid enough to withstand

the exercise. There doesn't seem to be a consensus. I started physical therapy

right away (1-2 weeks) after my revision, but that's because I have other

serious medical issues and couldn't stand, roll over in bed, or do basic

self-care without the therapy.

Having access to a decent physical therapist who understands & takes the long

fusion into consideration would be a great help too. It's amazing how many of

them don't understand the limitations/restrictions we have - and especially in

those critical early months where we need to be so careful not to bend, twist,

etc. Even at a world renowned rehab hospital in Chicago, I had one PT who tried

to bully me into doing something that would have been unsafe. I was souped up

on pain meds and couldn't control my emotions very well, so I just ended up

bawling and saying I couldn't do it. The PT was a weekend girl, not one of my

normal ones. The regular PTs were awesome, but this one insisted that I should

be trying to do a few moves that were not only impossible for me physically, but

they would have been very unsafe to even try for my new fusion. I got several

apologies from the regular PTs later.

I have heard many positive things about cranio-sacral massage/therapy and would

love the opportunity to try it sometime. I just don't know how to find access

to a decently qualified person! Is it covered by insurance?

As far as the psychotherapist goes - it could definately benefit many people to

see a counselor who is experienced with people who have chronic medical

conditions. It is challenging dealing with the limitations, and it is

frustrating having to justify one's pain, fatigue, and physical limitations to

people who don't " get it " - whether it be friends, family, employers, or total

strangers.

Anyone with a chronic medical condition, not just flatback could benefit from

these things. It certainly would be wonderful if they were available and

affordable for all. I'm very lucky in that our local chapter of the multiple

sclerosis society lobbied Illinois government to require insurance companies to

allow physical therapy for the purpose of maintaining function. For insurance

purposes, it is normally required that PT is only justified for the purposes of

improving a person's condition - not for maintaining function. With MS, there

IS no improvement once a person moves into the progressive stages. Physical

therapy is necessary to help preserve as much functioning as possible. But

since it doesn't " improve " a person's abilities (it just helps maintain them),

insurance companies don't approve it. But now in IL, they DO have to approve it

for those of us with MS. That, along with the fact that my insurance covers

unlimited visits for PT, I have had the wonderful opportunity to benefit from

having therapy 2-3x per week even since my revision. While I have other

circumstances going on with the MS, I feel that it has benefitted my spine as

well to have been able to have so much stretching and gentle exercise since the

revision.

I think you came up with a great list of things that flatbackers would find

helpful!

>

> Hi again,

>

>

>

> You know, I've been thinking about what exactly flatbackers would find

> helpful from the medical profession after surgery. This is what I've come up

> with so far:

>

>

>

> 1. Referral to our online group

> 2. Referral to a trained pain specialist - doctors not afraid to

> prescribe opiates and other serious pain meds

> 3. Referral to warm-water pool therapy - and to make it ongoing and

> free or cheap, and/or

> 4. Referral to physical therapists specifically trained to help people

> with extensive fusions and remaining curvatures - and to make it ongoing and

> free or cheap

> 5. Referral to a cranio-sacral (or similarly gentle) massage therapist

> - and to make it ongoing and free or cheap

> 6. Referral to psychotherapist specifically trained to help people with

> chronic illness - and to make it ongoing and free or cheap.

>

>

>

> What else???

>

>

>

> Yours,

>

> Andy Stanton

>

> Boulder CO

>

[Guest guest]

You go, girl!

Andy

From: [mailto: ] On Behalf Of Judith

Sent: Wednesday, December 09, 2009

1:11 AM

Subject: Re: RE:

Research

And a free shotgun trial for me to use on the next doctor to

look at xrays or my nape to butt scars and say " arent they beautiful?

they did a wonderful job! "

..

[Guest guest]

Thanks for your input, , but I have to call it as I see it. I do

think you were very clear in expressing what you meant -- clearer than

anything I have read so far about this intended study. The more I read,

the more garbled it sounds. At least from my experience with

peer-reviewed journals, I don't really think it's ready for prime time.

I could be wrong.

I can no longer remember if I forwarded Carolyn's letter to the group --

I think I did. I'm curious how many of our members think that these

researchers are on the right track in hoping to start a support group

for us which will help us learn to cope with our conditions.

I was very interested to learn that you are in a long-term follow-up

study yourself. Guess I just missed that one when I had surgery with Dr.

Ondra. I was in a gait study with some very nice researchers at

Northwestern but somehow didn't follow up (shame on me).

I hope the snow did not hit you too hard. Boy, am I glad I got those

strap-on cleats for my sneakers. I walked to Home Depot last night, and

it was wicked out there. And now we're headed into subarctic

temperatures . . . winter, indeed, has arrived, at least in our neck of

the woods. I'm ready to crawl back under the quilt and hibernate . . . .

Best,

> >

> > Hi ,

> >

> >

> >

> > I reread your email to Carolyn and her email in response. Her goals

are very

> > disturbing. To my mind, the idea that she can have anything useful

to say to

> > flatbackers to help us " cope " is pure arrogance. Also, that she and

her ilk

> > think it takes An MD or PhD to define " quality of life " and teach

people how

> > to achieve it is outrageous.

> >

> >

> >

> > These are the salient passages I noted in her email/study:

> >

> >

> >

> > 1) " The basic idea of what we are trying to do is look deeper at the

> > outcomes of surgery for scoliosis in adult-onset and

flatback-revised

> > patients by getting at how different people appraise or think about

quality

> > of life and what is important.Quality of life is defined as positive

" role

> > performance, adaptability, and existential well-being. " Um, duh.

> >

> >

> >

> > 2) What can we teach patients that can improve their coping skills -

what

> > can we teach in a " group for folks with flatback syndrome? " I think

a more

> > relevant - and useful - question is what can we teach her? Plenty.

> >

> >

> >

> > 3) " Whereas physician reports of their results might indicate a good

> > outcome, patient-reported outcomes sometimes indicate an inferior

outcome

> > following spine treatment. " As you say, , they should try

living in

> > our skin. What self-serving arrogance.

> >

> >

> >

> > You know, I went to see a surgeon in Denver, recommended to me by

Dr.

> > Boachie, because I was having hardware pain. He confidently took my

history,

> > looked at my scans and declared that Dr. Boachie had done a

phenomenal job

> > and that I was straight from the tip of my head to my toes. Did he

discuss

> > my pain? No. It seemed he was saying that I shouldn't have any,

considering

> > what a boffo job Dr. Boachie did. I mean, the guy was nice enough,

but

> > really, are Dr. Schwartz and her colleagues going by assessments

such as

> > his?

> >

> >

> >

> > Are you sure you want me to participate in your discussion with

Carolyn????

> >

> >

> >

> > Yours,

> >

> > Andy

> >

>

[Guest guest]

it's nine and a half steps turn and fire isn't it?

From: Andy Stanton <andystanton@...> Sent: Wed, December 9, 2009 6:12:12 PMSubject: RE: RE: Research

You go, girl!

Andy

From: FeistyScolioFlatbac kers@groups .com [mailto: FeistyScolioFlatbac kers@groups .com ] On Behalf Of Judith Sent: Wednesday, December 09, 2009 1:11 AMFeistyScolioFlatbac kers@groups .comSubject: Re: RE: Research

And a free shotgun trial for me to use on the next doctor to look at xrays or my nape to butt scars and say "arent they beautiful? they did a wonderful job!"

..

[Guest guest]

,

Wow, you were brave to be out last night! But maybe you guys didn't get hit as

much as us! We ended up with 10 inches of the really heavy, wet snow yesterday.

School was cancelled, and the kids had a blast making a snowman with my husband

before he went to work. Today tho the temps were between -2 and +5, with

windchills of about 20 below zero. Yuck!! I cancelled my physical therapy this

morning, because I didn't want to be out driving in it and possibly get stuck

with my wheelchair. I would have had my 4yr old with me too, and it's just way

too cold to risk that.

If I can find more info on the study I'm in, I'll forward it to you. Ondra &

Koski asked me to join it right after my surgery in 2007. Some places have data

from more than 5 years post-op already, and they're hoping to have enough people

stick with it that they can go 20 years. It's an Adult Spinal Deformity study,

and there are usually several different questionaires I fill out each time. I

did one at like 1 month post, then more at around 3mo, 6mo, 9mo, and 1 yr (I am

just approximating as I'm not quite sure if they had each of those timepoints).

Then I did it again at 2yrs. I believe they told me that I would likely do it

once a year now until 5yrs. Then they might cut back to a lesser frequency.

Stay warm!! I love the idea of those cleats! I was always thinking back in

college how wonderful something like that would be. I was terrible at walking

on snow/ice.

> > >

> > > Hi ,

> > >

> > >

> > >

> > > I reread your email to Carolyn and her email in response. Her goals

> are very

> > > disturbing. To my mind, the idea that she can have anything useful

> to say to

> > > flatbackers to help us " cope " is pure arrogance. Also, that she and

> her ilk

> > > think it takes An MD or PhD to define " quality of life " and teach

> people how

> > > to achieve it is outrageous.

> > >

> > >

> > >

> > > These are the salient passages I noted in her email/study:

> > >

> > >

> > >

> > > 1) " The basic idea of what we are trying to do is look deeper at the

> > > outcomes of surgery for scoliosis in adult-onset and

> flatback-revised

> > > patients by getting at how different people appraise or think about

> quality

> > > of life and what is important.Quality of life is defined as positive

> " role

> > > performance, adaptability, and existential well-being. " Um, duh.

> > >

> > >

> > >

> > > 2) What can we teach patients that can improve their coping skills -

> what

> > > can we teach in a " group for folks with flatback syndrome? " I think

> a more

> > > relevant - and useful - question is what can we teach her? Plenty.

> > >

> > >

> > >

> > > 3) " Whereas physician reports of their results might indicate a good

> > > outcome, patient-reported outcomes sometimes indicate an inferior

> outcome

> > > following spine treatment. " As you say, , they should try

> living in

> > > our skin. What self-serving arrogance.

> > >

> > >

> > >

> > > You know, I went to see a surgeon in Denver, recommended to me by

> Dr.

> > > Boachie, because I was having hardware pain. He confidently took my

> history,

> > > looked at my scans and declared that Dr. Boachie had done a

> phenomenal job

> > > and that I was straight from the tip of my head to my toes. Did he

> discuss

> > > my pain? No. It seemed he was saying that I shouldn't have any,

> considering

> > > what a boffo job Dr. Boachie did. I mean, the guy was nice enough,

> but

> > > really, are Dr. Schwartz and her colleagues going by assessments

> such as

> > > his?

> > >

> > >

> > >

> > > Are you sure you want me to participate in your discussion with

> Carolyn????

> > >

> > >

> > >

> > > Yours,

> > >

> > > Andy

> > >

> >

>

[Guest guest]

I think that's an excellent list, Andy. I kept thinking I had something to add

to it, but so far I really don't. Maybe I will come up with something as I

cogitate further . . . but it seems to me you've really covered everything.

Best,

E.

>

> Hi again,

>

>

>

> You know, I've been thinking about what exactly flatbackers would find

> helpful from the medical profession after surgery. This is what I've come up

> with so far:

>

>

>

> 1. Referral to our online group

> 2. Referral to a trained pain specialist - doctors not afraid to

> prescribe opiates and other serious pain meds

> 3. Referral to warm-water pool therapy - and to make it ongoing and

> free or cheap, and/or

> 4. Referral to physical therapists specifically trained to help people

> with extensive fusions and remaining curvatures - and to make it ongoing and

> free or cheap

> 5. Referral to a cranio-sacral (or similarly gentle) massage therapist

> - and to make it ongoing and free or cheap

> 6. Referral to psychotherapist specifically trained to help people with

> chronic illness - and to make it ongoing and free or cheap.

>

>

>

> What else???

>

>

>

> Yours,

>

> Andy Stanton

>

> Boulder CO

>

[Guest guest]

I do love this group's spirit!

>

>

>

> it's nine and a half steps turn and fire isn't it?

>

>

>

>

> ________________________________

> From: Andy Stanton <andystanton@...>

>

> Sent: Wed, December 9, 2009 6:12:12 PM

> Subject: RE: RE: Research

>

>  

> You go, girl!

>  

> Andy

>  

>

> ________________________________

>

> From:FeistyScolioFlatbac kers@groups .com [mailto: FeistyScolioFlatbac

kers@groups .com ] On Behalf Of Judith

> Sent: Wednesday, December 09, 2009 1:11 AM

> FeistyScolioFlatbac kers@groups .com

> Subject: Re: RE: Research

>  

>  

> And a free shotgun trial for me to use on the next doctor to look at xrays or

my nape to butt scars and say " arent they beautiful? they did a wonderful job! "

> .

>

[Guest guest]

Hi Greth,

I would not suggest the lapband. Dr. Aceves does the sleeve and so many of the people who have had the lapband have had a revision to the sleeve.

The sleeve has a faster weight loss, it is permanent and requires no maintenance. Please research more about the sleeve and read all the posting here. The sleeve is the way to go and it is the "gold standards" of weight loss surgery at this time. If you have a lapband, it seems like most people struggle with what they eat and it seems to be mostly liquids most of the time.

After the 1st month with sleeve surgery, you can start eating healthy normal foods in small amounts. The sleeve surgery is only a TOOL and it allows you to achieve your weight loss. You have to work at losing the weigh, by eating healthy and small portions along with some form of exercise. I am older than a lot of the people on here. I have lost 105 pounds. I was sleeved on Oct 21, 2008 and it took me about 14 months to lose this much weight and I am 64 now.

I am not sure what question you have, but please ask away and I will try to answer them. At first I thought I wanted a lapband until my doctor here in the US said they really aren't that safe, the slip, tear the stomach, and no one knows what that plastic band will do in 10 years from now inside you. So I would only consider the sleeve surgery if I were you. Too many issues and problems with a lapband.

Take care,

Suzanne

[Guest guest]

I had a band originally.... biggest mistake EVER!  I switched to a sleeve and that has been fantastic.  Dr. A does all the surgery types.On Thu, Jul 1, 2010 at 7:23 PM, greth32 <greth32@...> wrote:

 

Hi,

I'm new in this group and still researching al the WLS surgery options.

Could any of you maybe tell me why you decided to have the lap band and not

for example the gastric sleeve.

Does Dr. Aceves only do the lap band or also the sleeve?

Thank you very much for your info. This is a big decision for me and I'm just not sure what to do.

Greth

[Guest guest]

Dr. A does all three. I opted sleeve because it was less invasive than the gastric by pass and the lap band was to much up keep and not an option for me. Plus, I have not heard a lot of success stories with the lap band. Many are having a lot of trouble with it or having it removed and then have the sleeve done. If you read the blogs you will find that many prefer the sleeve to anything else. According to my doctor she told me the sleeve is the new kid on the block, with many success stories to back it. Good luck to you no matter what decision you make.

Pam

From: greth32 <greth32@...> Sent: Thu, July 1, 2010 7:23:34 PMSubject: research

Hi,I'm new in this group and still researching al the WLS surgery options.Could any of you maybe tell me why you decided to have the lap band and notfor example the gastric sleeve.Does Dr. Aceves only do the lap band or also the sleeve?Thank you very much for your info. This is a big decision for me and I'm just not sure what to do. Greth