RE: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

February 12, 2010

,

I will start working on my letter to Dr. Oz this weekend and will post it here once I send it. I think this is a great way to get his attention as the impact of a multitude of letters will be far greater than just one. I also think that sending in a letter by snail mail that contains before and after pictures and x-rays would have a huge impact. Seeing how disabled many of our members were, or still are, due to their initial scoliosis surgeries is quite heart rending and there is nothing more shocking than to see how much hardware is used in correcting the problems of flatback. Just a thought for those who have pictures and x-rays to illustrate what this syndrome really does. Sometimes a picture is worth a thousand words - right?

Jeanne

OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Hi, Everyone --Just gotta say it one more time: We were totally excited and thrilled at the major response to last week's Question of the Week. That question dealt with how we can publicize the seriousness of flatback syndrome, which is expected to afflict at least one million of us with Harrington or Luque instrumentation. It's clear from the response that our members are able, ready, and willing to spread the word!We received a number of great ideas, and we're keeping them all in mind. For this first effort, we decided that it makes the most sense to follow the advice of those who suggested the Dr. Oz Show. We are planning to send as many individual emails as possible to that program -- ideally, one from every single member of this group -- explaining how we got flatback and how it has affected our lives. It wouldn't hurt to include a few stories of our encounters with doctors who never heard of this condition or who told us we were fine -- or those who wanted to do well-intentioned but ineffective and risky surgeries. We want Dr. Oz to know that doctors are STILL causing flatback syndrome, despite having much better hardware to use for today's fusions. We want his viewers to know that just about anyone they may know or love who has undergone spinal fusion for scoliosis is at a high degree of risk for flatback syndrome -- and that once flatback is diagnosed, they need to exercise extraordinary care in picking a surgeon, since there are relatively few surgeons nationwide who are fully qualified to perform the massive and intricate revision surgery which is the only way to correct a flatback deformity.After batting this back and forth with co-moderator Maas, I am convinced that a flurry of individual letters -- a deluge, if possible! -- has a better chance of perking up interest than my lone little post regarding prevalence statistics, etc. And if you don't plan to write immediately, that's o.k. too -- why not a bunch of letters this week, next week, and the week after that? The more often "flatback" pops up in Dr. Oz's mail, the more likely he is to realize that this is a legitimate and not a medically rare or exotic topic -- a subject with a potentially large and concerned viewing audience.In considering what to write, feel free to use your personal story as you may already have written it for this group. But whether you do that, or write something entirely new, would you kindly send a copy to the group for reposting? This will give us a clear and precise idea of just how many members are taking part in this campaign, plus it will provide a fascinating new chronicle of our "collective narrative" to archive at the site. The best way to get your email to Dr. Oz is via the following link: http://www.doctoroz.com/plugger?tid=2397 That should take you to a short form to fill out, with a space for inputting your story. (I have not tested this yet, but I expect and hope there is plenty of space for all of your story -- just keep typing!)You are, of course, completely free to write whatever you wish. In case anyone is stumped for ideas, though, has suggested the following general outline:- When you developed scoliosis- When you had your initial scoliosis surgery- What you were told to expect down the road- When you began having problems as an adult and what those problems were- Difficulties in finding answers and even in getting an accurate diagnosis from the doctor(s) you consulted- How many surgeons you saw before you finally found out that you had flatback syndrome- When you had or expect to have revision surgery, and what the procedure basically entailed (for example, posterior only or posterior-anterior-posterior, length of time under general anesthesia, number of osteotomies, hardware removal/replacement, etc.) - Recovery time; adjustments you had to make; any unexpected problems that occurred- Later problems you may have had: Degeneration above or below fusion? Pseudarthrosis? Uncontrolled or poorly controlled pain? Sacroiliac issues? Knee, hip, foot problems?I think I might add: What were you doing before you developed flatback syndrome -- in school, running around after your active and adorable kids or grandkids, working full time or part time as a _____ (nurse, teacher, secretary, lawyer, computer programmer)? How has your life changed since then? Are you totally disabled, i.e., receiving or waiting for Social Security Disability benefits? You could say something, too, about how this whole ordeal has affected your family and your social life. By all means, feel free to mention the and direct Dr. Oz to our website: / This is our opportunity to do something that really needs to be done -- to be heard on a national scale -- to help reach untold numbers of people out there who may still not know what is going on with their spines or how they will ever find help. I was going to say, "Please consider this the Project of the Week, in place of a Question of the Week." But it's probably more accurate to say that this is the Project of a Lifetime. Every single letter counts -- every single member of this group counts.Thank you so much for your participation, and for your commitment to getting the word out.Best,

February 12, 2010

Hi - I have 1 question and 1 comment. I have been working on my snail

mail letter to the show. As I kept pondering my approach, I thought about how

others would tell their stories. Some will be more clinical & cite

statistics...others will take the emotional toll road, & still others will focus

on the physical difficulties & pain. For this reason I think that multiple

authors with different views of our common problem will be a very powerful

approach. So, that was my comment. My question is, when I'm done, how/where do

you want me to put it on this site?

......................Kathy

February 13, 2010

Excellent point Jeanne And for those people who have any regular pics (not

xrays) showing themselves bent over before revision - that would make for a good

visual too!

>

> ,

>

> I will start working on my letter to Dr. Oz this weekend and will post it here

once I send it. I think this is a great way to get his attention as the impact

of a multitude of letters will be far greater than just one. I also think that

sending in a letter by snail mail that contains before and after pictures and

x-rays would have a huge impact. Seeing how disabled many of our members were,

or still are, due to their initial scoliosis surgeries is quite heart rending

and there is nothing more shocking than to see how much hardware is used in

correcting the problems of flatback. Just a thought for those who have pictures

and x-rays to illustrate what this syndrome really does. Sometimes a picture is

worth a thousand words - right?

>

> Jeanne

>

> OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

>

> Hi, Everyone --

>

> Just gotta say it one more time: We were totally excited and thrilled at the

major response to last week's Question of the Week. That question dealt with how

we can publicize the seriousness of flatback syndrome, which is expected to

afflict at least one million of us with Harrington or Luque instrumentation.

It's clear from the response that our members are able, ready, and willing to

spread the word!

>

> We received a number of great ideas, and we're keeping them all in mind. For

this first effort, we decided that it makes the most sense to follow the advice

of those who suggested the Dr. Oz Show. We are planning to send as many

individual emails as possible to that program -- ideally, one from every single

member of this group -- explaining how we got flatback and how it has affected

our lives. It wouldn't hurt to include a few stories of our encounters with

doctors who never heard of this condition or who told us we were fine -- or

those who wanted to do well-intentioned but ineffective and risky surgeries. We

want Dr. Oz to know that doctors are STILL causing flatback syndrome, despite

having much better hardware to use for today's fusions. We want his viewers to

know that just about anyone they may know or love who has undergone spinal

fusion for scoliosis is at a high degree of risk for flatback syndrome -- and

that once flatback is diagnosed, they need to exercise extraordinary care in

picking a surgeon, since there are relatively few surgeons nationwide who are

fully qualified to perform the massive and intricate revision surgery which is

the only way to correct a flatback deformity.

>

> After batting this back and forth with co-moderator Maas, I am

convinced that a flurry of individual letters -- a deluge, if possible! -- has a

better chance of perking up interest than my lone little post regarding

prevalence statistics, etc. And if you don't plan to write immediately, that's

o.k. too -- why not a bunch of letters this week, next week, and the week after

that? The more often " flatback " pops up in Dr. Oz's mail, the more likely he is

to realize that this is a legitimate and not a medically rare or exotic topic --

a subject with a potentially large and concerned viewing audience.

>

> In considering what to write, feel free to use your personal story as you

may already have written it for this group. But whether you do that, or write

something entirely new, would you kindly send a copy to the group for reposting?

This will give us a clear and precise idea of just how many members are taking

part in this campaign, plus it will provide a fascinating new chronicle of our

" collective narrative " to archive at the site.

>

> The best way to get your email to Dr. Oz is via the following link:

http://www.doctoroz.com/plugger?tid=2397 That should take you to a short form to

fill out, with a space for inputting your story. (I have not tested this yet,

but I expect and hope there is plenty of space for all of your story -- just

keep typing!)

>

> You are, of course, completely free to write whatever you wish. In case

anyone is stumped for ideas, though, has suggested the following general

outline:

>

> - When you developed scoliosis

> - When you had your initial scoliosis surgery

> - What you were told to expect down the road

> - When you began having problems as an adult and what those problems were

> - Difficulties in finding answers and even in getting an accurate diagnosis

from the doctor(s) you consulted

> - How many surgeons you saw before you finally found out that you had

flatback syndrome

> - When you had or expect to have revision surgery, and what the procedure

basically entailed (for example, posterior only or posterior-anterior-posterior,

length of time under general anesthesia, number of osteotomies, hardware

removal/replacement, etc.)

> - Recovery time; adjustments you had to make; any unexpected problems that

occurred

> - Later problems you may have had: Degeneration above or below fusion?

Pseudarthrosis? Uncontrolled or poorly controlled pain? Sacroiliac issues? Knee,

hip, foot problems?

>

> I think I might add: What were you doing before you developed flatback

syndrome -- in school, running around after your active and adorable kids or

grandkids, working full time or part time as a _____ (nurse, teacher, secretary,

lawyer, computer programmer)? How has your life changed since then? Are you

totally disabled, i.e., receiving or waiting for Social Security Disability

benefits? You could say something, too, about how this whole ordeal has affected

your family and your social life.

>

> By all means, feel free to mention the and direct

Dr. Oz to our website:

/

>

> This is our opportunity to do something that really needs to be done -- to

be heard on a national scale -- to help reach untold numbers of people out there

who may still not know what is going on with their spines or how they will ever

find help.

>

> I was going to say, " Please consider this the Project of the Week, in place

of a Question of the Week. " But it's probably more accurate to say that this is

the Project of a Lifetime. Every single letter counts -- every single member of

this group counts.

>

> Thank you so much for your participation, and for your commitment to getting

the word out.

>

> Best,

>

February 13, 2010

OK, , here’s the letter I

wrote to Dr. Oz (whom I’ve never watched, unfortunately):

Stricken with scoliosis at the age of

eleven, I've spent the rest of my life managing pain symptoms associated with

this disease. Though many people have heard of scoliosis, few - including

orthopedic surgeons - have no knowledge of Flatback Syndrome - a man-made

disease caused by faulty implants (Harrington rods) to improve curvatures,

routinely installed between 1969 and 1990. I've had three surgical procedures

for scoliosis and Flatback Syndrome that have both helped and harmed me.

My mother first noticed my spine

wasn’t straight when she saw me in a bathing suit at the beach. I was

eleven years old. She took me to three local orthopedic specialists on Long Island, New

York, who took X-rays and confirmed that I had an L

curve. Each physician told my mother there was nothing that could be done for

scoliotic curves, and so my disease progressed until my spine had twisted in a

spiral and my left-side ribs had migrated to my back. One leg was shorter, one

hip bone was higher, and I had developed a hump.

When I was eighteen, while my sister was

waiting to be interviewed for nursing school, she picked up a newsletter in the

waiting room of Columbia-Presbyterian Hospital in Manhattan.

When her name was called, she stuffed the newsletter in her purse. At home, my

mom found it and read an article about how orthopedic surgeons were performing

spinal fusions for those with progressive scoliosis.

As you would guess, a short time

afterward, in the late 1970s, I had my first spinal fusion. My 56-degree curve

was corrected to 25 degrees, and I had a Harrington rod installed for

stabilization while my bones fused. I was sent home in a twenty-five-pound

plaster body cast that started at the groin and ended at my chin. In back, it

continued upward to form a headrest. I wore it for nine months—with no

showering. I was eighteen and forever traumatized. To have had my body exposed

to so many medical and hospital personnel and to be seen in such an ugly

contraption, as an adolescent, was mortifying. I hibernated most of those nine

months, while all my friends went off and experienced their first year of

college.

I had minor pain now and then over the

years, but for the most part, I was able to do all the things I needed to do.

Then, about twenty-five years after my

surgery, I started to develop back pain. A rheumatologist prescribed a muscle

relaxer (Flexeril, or cyclobenzaprine) and daily walking. At first, I was so

stiff that I could barely stretch my legs enough to walk without pain. With

time, the medication relaxed my muscles and they stopped irritating the nerves

that were signaling pain to my brain. I was finally able to walk—and

eventually even jog.

When I developed bursitis (inflammation of

the sac between the tendon and the bone) in my hips, three years later, I could

no longer walk for exercise. Cortisone injections helped in the short run, and

lots of Ultram (tramadol, a non-narcotic painkiller) combined with Tylenol

(acetaminophen) kept me going for a while. Ultimately, though, I developed

unbearable sciatica in one leg and referred pain in my other ankle that felt

like a fracture that would not heal. I sought out surgeons because I knew I

would need more surgery—it had just been a matter of time.

What was going on—and what goes on

for nearly every scoliosis patient who had a spinal fusion before

1990—was that I was experiencing pinched nerves due to a narrowing of the

spinal canal and the foramina (holes) that let the main nerve root branch off

into the body’s extremities. This was partly because the bones in my

spine never fused properly, or perhaps the fusion broke early on; either way,

my vertebrae continued to shift, meeting at unnatural angles and rubbing up

against one another.

In addition, I was developing Flatback

Syndrome, a problem caused by my original surgery. The surgeon had reshaped my

spine to be straight from side to side, but this plan did not take into account

the spine’s natural, mild front-to-back curves. These curves help to

balance the loads carried by the spine. So my spine had been molded into

another abnormal shape. This is what all scoliosis surgeons were doing at the

time. They didn’t know it would turn out to be a problem in years to

come.

My goals for the second surgery in 2003

were to relieve the pinched nerves and Flat Back syndrome, and to re-fuse the

spine to prevent the vertebrae from shifting and rotating around again (like a

spiral staircase). The surgery took 8 hours and was in two parts - cages filled

with bone chips (for fusing the spine) were inserted from a cut in my abdomen

and then I was rolled over and new hardware - two Luque rods with pedicle

screws - were attached to my spine. My surgeon also rotated my spine to get rid

of my hump and give me better sagittal balance. During surgery my lung was

nicked and, after surgery, I had to have a crash cart next to me because I was

overdosing on IV morphine for pain. My poor husband! I was in the hospital for

three weeks and he was watching my progress and setbacks.

In terms of my goals, the surgery was a

success. I was thrilled to be rid of sciatica, Flatback and referred pain. As

part of my recovery, I took part in warm-water therapy, to regain balance and

help restore lost muscle tone and strength, and later added “land”

therapy that included stretching and using the recumbent bicycle and a fitness

ball.

Yet unexpectedly I found I had a new

source of pain—my upper back. It wasn’t difficult to understand

what was going on. Now that a good part of my spine was strongly fused (from

the sacrum to just below my shoulder blades - Sacrum1 to Thoracic 10) and

immobilized, the stress of all of my movement fell on the part of my back that

still could move: the part above the new fusion. That, in turn, exacerbated the

osteoarthritis (degeneration of the joints) that had developed where my first

fusion met up with my natural spine. After years of bearing the brunt of much

of my movement, my upper back finally was falling apart, too.

My surgeon was sympathetic and referred me

to physical therapy. After several trials of physical therapy, however, I still

had chronic pain between my shoulder blades and in the tops of my shoulders and

my neck. I also had tailbone pain, for the same reason, and I developed severe

pain from scar tissue that attaches my paraspinal (beside the spine) muscle to

my ribs and spinal bones. The scar tissue can be removed, but it will grow

back. I also needed to have some of my metal hardware (half a steel rod and the

screws that attached it to my spine) removed because the screws were migrating

through the fascia (internal skin) and coming through the skin of my back

(ugh).

I began taking medication for both pain

and depression. If you’ve ever had pain, you know how lonely an

experience it can be.

To look at me, you would think I am doing

okay, and in many ways I am. I go food shopping, vacuum a little, and cook. But

I can no longer hold down a paid job anymore (I was a psychotherapist, mostly

at UMass, for 25 years). I sometimes find myself crying if I'm seated too long

(more than fifteen minutes), for instance, or if I run more than one errand a

day, since that often starts what I call a “pain process,” a series

of worsening symptoms that—unless treated with bed rest, heat, and

medication—mushrooms into a prolonged bout of pain and downtime. Since no

one can see an external manifestation of my pain, it seems to me like my

unhappy secret.

And I find it confusing. As people age,

most everyone experiences pain. So how can I claim to be in more pain than the

next aging person? Is it okay to acknowledge my pain, to take it

seriously—or is it better to deny it, minimize it, and rise above it as

best I can? To own up to it seemed to me like malingering (wanting attention),

and as a psychotherapist, I knew this was a shameful diagnosis. Yikes! My

feelings run the gamut of self-doubt, guilt, self-reproach, sadness,

helplessness, hopelessness, and depression.

It took a long time to finally give myself

permission to have chronic pain—that is, to recognize and acknowledge

that it plays a big part in my life.

I've found an on-line support group

comprised of people in the same or similar situation as I'm in - in pain from

failed spinal surgery, facing or recovering from revision surgery, depressed,

angry, emotionally isolated, misunderstood by friends, family and coworkers,

barely getting by. The group has been helpful in that we commiserate, exchange

information about coping, and teach newbies who are considering revision

surgery. The site is called

(/).

My life is very limited these days. I

can't exercise without pain, I take pain medication (Flexeril and sometimes

Percocet) that makes me tired, and I have trouble sleeping due to pain. I can't

see friends as often as I'd like, I can't attend meetings for my hobbies (art

quilting, writing), and I can't even volunteer - because my level of pain and

fatigue is variable and makes me undependable. I'm collecting Disability

payments and it kills me that I can't do more than occasional freelance

journalism.

I wrote a book, Pilates for Fragile Backs,

published in 2006 by New Harbinger Publications, but even the modified

exercises I describe are too much for me to pursue.

It seems as though there is no information

out there for the public about those of us who have had fusions for scoliosis

and who must endure surgery(ies), intermittent pain and chronic fatigue. Even

orthopedic surgeons have never heard of Flatback Syndrome! Through the

group, we often have to steer patients away from docs

who continue to deny the existence of Flatback. Even the newer Luque rods (as

opposed to the Harrington rods), that take natural lordosis (front-to-back

curves) into account have caused problems.

Famous people have had revision surgery -

Yo Yo Ma and Isabella Rossalini are examples. Ferguson's daughter has

scoliosis. There are so many others out there - but not much info about their

ordeal. Please consider educating your viewers about the history and current

treatment for scoliosis and consequent Flatback Syndrome.

Thank you.

From: [mailto: ] On Behalf Of

Sent: Friday, February 12, 2010

2:45 PM

Subject: OFFICAL

LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Hi, Everyone --

After batting this back and forth with co-moderator Maas, I am

convinced that a flurry of individual letters -- a deluge, if possible! -- has

a better chance of perking up interest than my lone little post regarding

prevalence statistics, etc. And if you don't plan to write immediately, that's

o.k. too -- why not a bunch of letters this week, next week, and the week after

that? The more often " flatback " pops up in Dr. Oz's mail, the more

likely he is to realize that this is a legitimate and not a medically rare or

exotic topic -- a subject with a potentially large and concerned viewing

audience.

In considering what to write, feel free to use your personal story as you may

already have written it for this group. But whether you do that, or write

something entirely new, would you kindly send a copy to the group for

reposting? This will give us a clear and precise idea of just how many members

are taking part in this campaign, plus it will provide a fascinating new

chronicle of our " collective narrative " to archive at the site.

..

February 14, 2010

Andy,

What an excellent letter. If we are all able to generate letters of that quality, how can Dr. Oz not want to use this topic for one of his shows?

Jeanne

RE: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

OK, , here’s the letter I wrote to Dr. Oz (whom I’ve never watched, unfortunately):

Stricken with scoliosis at the age of eleven, I've spent the rest of my life managing pain symptoms associated with this disease. Though many people have heard of scoliosis, few - including orthopedic surgeons - have no knowledge of Flatback Syndrome - a man-made disease caused by faulty implants (Harrington rods) to improve curvatures, routinely installed between 1969 and 1990. I've had three surgical procedures for scoliosis and Flatback Syndrome that have both helped and harmed me.

My mother first noticed my spine wasn’t straight when she saw me in a bathing suit at the beach. I was eleven years old. She took me to three local orthopedic specialists on Long Island, New York, who took X-rays and confirmed that I had an L curve. Each physician told my mother there was nothing that could be done for scoliotic curves, and so my disease progressed until my spine had twisted in a spiral and my left-side ribs had migrated to my back. One leg was shorter, one hip bone was higher, and I had developed a hump.

When I was eighteen, while my sister was waiting to be interviewed for nursing school, she picked up a newsletter in the waiting room of Columbia-Presbyterian Hospital in Manhattan. When her name was called, she stuffed the newsletter in her purse. At home, my mom found it and read an article about how orthopedic surgeons were performing spinal fusions for those with progressive scoliosis.

As you would guess, a short time afterward, in the late 1970s, I had my first spinal fusion. My 56-degree curve was corrected to 25 degrees, and I had a Harrington rod installed for stabilization while my bones fused. I was sent home in a twenty-five-pound plaster body cast that started at the groin and ended at my chin. In back, it continued upward to form a headrest. I wore it for nine months—with no showering. I was eighteen and forever traumatized. To have had my body exposed to so many medical and hospital personnel and to be seen in such an ugly contraption, as an adolescent, was mortifying. I hibernated most of those nine months, while all my friends went off and experienced their first year of college.

I had minor pain now and then over the years, but for the most part, I was able to do all the things I needed to do.

Then, about twenty-five years after my surgery, I started to develop back pain. A rheumatologist prescribed a muscle relaxer (Flexeril, or cyclobenzaprine) and daily walking. At first, I was so stiff that I could barely stretch my legs enough to walk without pain. With time, the medication relaxed my muscles and they stopped irritating the nerves that were signaling pain to my brain. I was finally able to walk—and eventually even jog.

When I developed bursitis (inflammation of the sac between the tendon and the bone) in my hips, three years later, I could no longer walk for exercise. Cortisone injections helped in the short run, and lots of Ultram (tramadol, a non-narcotic painkiller) combined with Tylenol (acetaminophen) kept me going for a while. Ultimately, though, I developed unbearable sciatica in one leg and referred pain in my other ankle that felt like a fracture that would not heal. I sought out surgeons because I knew I would need more surgery—it had just been a matter of time.

What was going on—and what goes on for nearly every scoliosis patient who had a spinal fusion before 1990—was that I was experiencing pinched nerves due to a narrowing of the spinal canal and the foramina (holes) that let the main nerve root branch off into the body’s extremities. This was partly because the bones in my spine never fused properly, or perhaps the fusion broke early on; either way, my vertebrae continued to shift, meeting at unnatural angles and rubbing up against one another.

In addition, I was developing Flatback Syndrome, a problem caused by my original surgery. The surgeon had reshaped my spine to be straight from side to side, but this plan did not take into account the spine’s natural, mild front-to-back curves. These curves help to balance the loads carried by the spine. So my spine had been molded into another abnormal shape. This is what all scoliosis surgeons were doing at the time. They didn’t know it would turn out to be a problem in years to come.

My goals for the second surgery in 2003 were to relieve the pinched nerves and Flat Back syndrome, and to re-fuse the spine to prevent the vertebrae from shifting and rotating around again (like a spiral staircase). The surgery took 8 hours and was in two parts - cages filled with bone chips (for fusing the spine) were inserted from a cut in my abdomen and then I was rolled over and new hardware - two Luque rods with pedicle screws - were attached to my spine. My surgeon also rotated my spine to get rid of my hump and give me better sagittal balance. During surgery my lung was nicked and, after surgery, I had to have a crash cart next to me because I was overdosing on IV morphine for pain. My poor husband! I was in the hospital for three weeks and he was watching my progress and setbacks.

In terms of my goals, the surgery was a success. I was thrilled to be rid of sciatica, Flatback and referred pain. As part of my recovery, I took part in warm-water therapy, to regain balance and help restore lost muscle tone and strength, and later added “land” therapy that included stretching and using the recumbent bicycle and a fitness ball.

Yet unexpectedly I found I had a new source of pain—my upper back. It wasn’t difficult to understand what was going on. Now that a good part of my spine was strongly fused (from the sacrum to just below my shoulder blades - Sacrum1 to Thoracic 10) and immobilized, the stress of all of my movement fell on the part of my back that still could move: the part above the new fusion. That, in turn, exacerbated the osteoarthritis (degeneration of the joints) that had developed where my first fusion met up with my natural spine. After years of bearing the brunt of much of my movement, my upper back finally was falling apart, too.

My surgeon was sympathetic and referred me to physical therapy. After several trials of physical therapy, however, I still had chronic pain between my shoulder blades and in the tops of my shoulders and my neck. I also had tailbone pain, for the same reason, and I developed severe pain from scar tissue that attaches my paraspinal (beside the spine) muscle to my ribs and spinal bones. The scar tissue can be removed, but it will grow back. I also needed to have some of my metal hardware (half a steel rod and the screws that attached it to my spine) removed because the screws were migrating through the fascia (internal skin) and coming through the skin of my back (ugh).

I began taking medication for both pain and depression. If you’ve ever had pain, you know how lonely an experience it can be.

To look at me, you would think I am doing okay, and in many ways I am. I go food shopping, vacuum a little, and cook. But I can no longer hold down a paid job anymore (I was a psychotherapist, mostly at UMass, for 25 years). I sometimes find myself crying if I'm seated too long (more than fifteen minutes), for instance, or if I run more than one errand a day, since that often starts what I call a “pain process,” a series of worsening symptoms that—unless treated with bed rest, heat, and medication—mushrooms into a prolonged bout of pain and downtime. Since no one can see an external manifestation of my pain, it seems to me like my unhappy secret.

And I find it confusing. As people age, most everyone experiences pain. So how can I claim to be in more pain than the next aging person? Is it okay to acknowledge my pain, to take it seriously—or is it better to deny it, minimize it, and rise above it as best I can? To own up to it seemed to me like malingering (wanting attention), and as a psychotherapist, I knew this was a shameful diagnosis. Yikes! My feelings run the gamut of self-doubt, guilt, self-reproach, sadness, helplessness, hopelessness, and depression.

It took a long time to finally give myself permission to have chronic pain—that is, to recognize and acknowledge that it plays a big part in my life.

I've found an on-line support group comprised of people in the same or similar situation as I'm in - in pain from failed spinal surgery, facing or recovering from revision surgery, depressed, angry, emotionally isolated, misunderstood by friends, family and coworkers, barely getting by. The group has been helpful in that we commiserate, exchange information about coping, and teach newbies who are considering revision surgery. The site is called (/).

My life is very limited these days. I can't exercise without pain, I take pain medication (Flexeril and sometimes Percocet) that makes me tired, and I have trouble sleeping due to pain. I can't see friends as often as I'd like, I can't attend meetings for my hobbies (art quilting, writing), and I can't even volunteer - because my level of pain and fatigue is variable and makes me undependable. I'm collecting Disability payments and it kills me that I can't do more than occasional freelance journalism.

I wrote a book, Pilates for Fragile Backs, published in 2006 by New Harbinger Publications, but even the modified exercises I describe are too much for me to pursue.

It seems as though there is no information out there for the public about those of us who have had fusions for scoliosis and who must endure surgery(ies), intermittent pain and chronic fatigue. Even orthopedic surgeons have never heard of Flatback Syndrome! Through the group, we often have to steer patients away from docs who continue to deny the existence of Flatback. Even the newer Luque rods (as opposed to the Harrington rods), that take natural lordosis (front-to-back curves) into account have caused problems.

Famous people have had revision surgery - Yo Yo Ma and Isabella Rossalini are examples. Ferguson's daughter has scoliosis. There are so many others out there - but not much info about their ordeal. Please consider educating your viewers about the history and current treatment for scoliosis and consequent Flatback Syndrome.

Thank you.

From: [mailto: ] On Behalf Of Sent: Friday, February 12, 2010 2:45 PM Subject: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Hi, Everyone --After batting this back and forth with co-moderator Maas, I am convinced that a flurry of individual letters -- a deluge, if possible! -- has a better chance of perking up interest than my lone little post regarding prevalence statistics, etc. And if you don't plan to write immediately, that's o.k. too -- why not a bunch of letters this week, next week, and the week after that? The more often "flatback" pops up in Dr. Oz's mail, the more likely he is to realize that this is a legitimate and not a medically rare or exotic topic -- a subject with a potentially large and concerned viewing audience.In considering what to write, feel free to use your personal story as you may already have written it for this group. But whether you do that, or write something entirely new, would you kindly send a copy to the group for reposting? This will give us a clear and precise idea of just how many members are taking part in this campaign, plus it will provide a fascinating new chronicle of our "collective narrative" to archive at the site.

..

February 14, 2010

Thanks, Jeanne! How sweet of you!

Andy

From: [mailto: ] On Behalf Of Slinker

Sent: Sunday, February 14, 2010

4:08 PM

Subject: Re:

OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Andy,

What an

excellent letter. If we are all able to generate letters of that quality,

how can Dr. Oz not want to use this topic for one of his shows?

Jeanne

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms

of Use

..

February 14, 2010

Hi Andy,

Great letter to Dr. Oz....thanks!! Your situation sounds very similar to mine. My first surgery with Harrington rods was at age 14. I was fused from T3 to L4. I got by without too much pain until my early forties....and then started searching for a solution to the pain I was having above and below the fusion. I had a revision surgery in December of 2007 that removed some of old hardware, added ped. screws and other bolts/screws and fused my back down to S1. It took several months to recover from that surgery, but as soon as I could I went back for another surgery to fix neck pain I had been suffering from. In December of 2008 I had a 3 level artificial disc replacement at levels C4-5, 5-6, and 6-7. The artificial discs move like normal cervical discs should which reduces the wear and tear on the few remaining discs I have left. Have you considered artificial disc replacement as a solution to your upper back and neck pain?

Also.....I'm curious about your "medicinal mushrooms? Is that a prescription or do you mean the kind that grow in the woods?

Thanks for writing the letter to Dr. oz. I hope you get a positive response soon.

Melody

/

Stricken with scoliosis at the age of eleven, I've spent the rest of my life managing pain symptoms associated with this disease. Though many people have heard of scoliosis, few - including orthopedic surgeons - have no knowledge of Flatback Syndrome - a man-made disease caused by faulty implants (Harrington rods) to improve curvatures, routinely installed between 1969 and 1990. I've had three surgical procedures for scoliosis and Flatback Syndrome that have both helped and harmed me.

My mother first noticed my spine wasn't straight when she saw me in a bat hing suit at the beach. I was eleven years old. She took me to three local orthopedic specialists on Long Island, New York, who took X-rays and confirmed that I had an L curve. Each physician told my mother there was nothing that could be done for scoliotic curves, and so my disease progressed until my spine had twisted in a spiral and my left-side ribs had migrated to my back. One leg was shorter, one hip bone was higher, and I had developed a hump.

When I was eighteen, while my sister was waiting to be interviewed for nursing school, she picked up a newsletter in the waiting room of Columbia-Presbyterian Hospital in Manhattan. When her name was called, she stuffed the newsletter in her purse. At home, my mom found it and read an article about how orthopedic surgeons were performing spinal fusions for those with progressive scoliosis.

As you would guess, a short time afterward, in the late 1970s, I had my first spinal fusion. My 56-degree curve was corrected to 25 degrees, and I had a Harrington rod installed for stabilization while my bones fused. I was sent home in a twenty-five-pound plaster body cast that started at the groin and ended at my chin. In back, it continued upward to form a headrest. I wore it for nine months-with no showering. I was eighteen and forever traumatized. To have had my body exposed to so many medical and hospital personnel and to be seen in such an ugly contraption, as an adolescent, was mortifying. I hibernated most of those nine months, while all my friends went off and experienced their first year of college.

I had minor pain now and then over the years, but for the most part, I was able to do all the things I needed to do.

Then, about twenty-five years after my surgery, I started to develop back pain. A rheumatologist prescribed a muscle relaxer (Flexeril, or cyclobenzaprine) and daily walking. At first, I was so stiff that I could barely stretch my legs enough to walk without pain. With time, the medication relaxed my muscles and they stopped irritating the nerves that were signaling pain to my brain. I was finally able to walk-and eventually even jog.

When I developed bursitis (inflammation of the sac between the tendon and the bone) in my hips, three years later, I could no longer walk for exercise. Cortisone injections helped in the short run, and lots of Ultram (tramadol, a non-narcotic painkiller) combined with Tylenol (acetaminophen) kept me going for a while. Ultimately, though, I developed unbearable sciatica in one leg and referred pain in my other ankle that felt like a fracture that would not heal. I sought out surgeons because I knew I would need more surgery-it had just been a matter of time.

What was going on-and what goes on for nearly every scoliosis patient who had a spinal fusion before 1990-was that I was experiencing pinched nerves due to a narrowing of the spinal canal and the foramina (holes) that let the main nerve root branch off into the body's extremities. This was partly because the bones in my spine never fused properly, or perhaps the fusion broke early on; either way, my vertebrae continued to shift, meeting at unnatural angles and rubbing up against one another.

In addition, I was developing Flatback Syndrome, a problem caused by my original surgery. The surgeon had reshaped my spine to be straight from side to side, but this plan did not take into account the spine's natural, mild front-to-back curves. These curves help to balance the loads carried by the spine. So my spine had been molded into another abnormal shape. This is what all scoliosis surgeons were doing at the time. They didn't know it would turn out to be a problem in years to come.

My goals for the second surgery in 2003 were to relieve the pinched nerves and Flat Back syndrome, and to re-fuse the spine to prevent the vertebrae from shifting and rotating around again (like a spiral staircase). The surgery took 8 hours and was in two parts - cages filled with bone chips (for fusing the spine) were inserted from a cut in my abdomen and then I was rolled over and new hardware - two Luque rods with pedicle screws - were attached to my spine. My surgeon also rotated my spine to get rid of my hump and give me better sagittal balance. During surgery my lung was nicked and, after surgery, I had to have a crash cart next to me because I was overdosing on IV morphine for pain. My poor husband! I was in the hospital for three weeks and he was watching my progress and setbacks.

In terms of my goals, the surgery was a success. I was thrilled to be rid of sciatica, Flatback and referred pain. As part of my recovery, I took part in warm-water therapy, to regain balance and help restore lost muscle tone and strength, and later added "land" therapy that included stretching and using the recumbent bicycle and a fitness ball.

Yet unexpectedly I found I had a new source of pain-my upper back. It wasn't difficult to understand what was going on. Now that a good part of my spine was strongly fused (from the sacrum to just below my shoulder blades - Sacrum1 to Thoracic 10) and immobilized, the stress of all of my movement fell on the part of my back that still could move: the part above the new fusion. That, in turn, exacerbated the osteoarthritis (degeneration of the joints) that had developed where my first fusion met up with my natural spine. After years of bearing the brunt of much of my movement, my upper back finally was falling apart, too.

My surgeon was sympathetic and referred me to physical therapy. After several trials of physical therapy, however, I still had chronic pain between my shoulder blades and in the tops of my shoulders and my neck. I also had tailbone pain, for the same reason, and I developed severe pain from scar tissue that attaches my paraspinal (beside the spine) muscle to my ribs and spinal bones. The scar tissue can be removed, but it will grow back. I also needed to have some of my metal hardware (half a steel rod and the screws that attached it to my spine) removed because the screws were migrating through the fascia (internal skin) and coming through the skin of my back (ugh).

I began taking medication for both pain and depression. If you've ever had pain, you know how lonely an experience it can be.

To look at me, you would think I am doing okay, and in many ways I am. I go food shopping, vacuum a little, and cook. But I can no longer hold down a paid job anymore (I was a psychotherapist, mostly at UMass, for 25 years). I sometimes find myself crying if I'm seated too long (more than fifteen minutes), for instance, or if I run more than one errand a day, since that often starts what I call a "pain process," a series of worsening symptoms that-unless treated with bed rest, heat, and medication-mushrooms into a prolonged bout of pain and downtime. Since no one can see an external manifestation of my pain, it seems to me like my unhappy secret.

And I find it confusing. As people age, most everyone experiences pain. So how can I claim to be in more pain than the next aging person? Is it okay to acknowledge my pain, to take it seriously-or is it better to deny it, minimize it, and rise above it as best I can? To own up to it seemed to me like malingering (wanting attention), and as a psychotherapist, I knew this was a shameful diagnosis. Yikes! My feelings run the gamut of self-doubt, guilt, self-reproach, sadness, helplessness, hopelessness, and depression.

It took a long time to finally give myself permission to have chronic pain-that is, to recognize and acknowledge that it plays a big part in my life.

I've found an on-line support group comprised of people in the same or similar situation as I'm in - in pain from failed spinal surgery, facing or recovering from revision surgery, depressed, angry, emotionally isolated, misunderstood by friends, family and coworkers, barely getting by. The group has been helpful in that we commiserate, exchange information about coping, and teach newbies who are considering revision surgery. The site is called (/).

My life is very limited these days. I can't exercise without pain, I take pain medication (Flexeril and sometimes Percocet) that makes me tired, and I have trouble sleeping due to pain. I can't see friends as often as I'd like, I can't attend meetings for my hobbies (art quilting, writing), and I can't even volunteer - because my level of pain and fatigue is variable and makes me undependable. I'm collecting Disability payments and it kills me that I can't do more than occasional freelance journalism.

I wrote a book, Pilates for Fragile Backs, published in 2006 by New Harbinger Publications, but even the modified exercises I describe are too much for me to pursue.

It seems as though there is no information out there for the public about those of us who have had fusions for scoliosis and who must endure surgery(ies), intermittent pain and chronic fatigue. Even orthopedic surgeons have never heard of Flatback Syndrome! Through the group, we often have to steer patients away from docs who continue to deny the existence of Flatback. Even the newer Luque rods (as opposed to the Harrington rods), that take natural lordosis (front-to-back curves) into account have caused problems.

Famous people have had revision surgery - Yo Yo Ma and Isabella Rossalini are examples. Ferguson's daughter has scoliosis. There are so many others out there - but not much info about their ordeal. Please consider educating your viewers about the history and current treatment for scoliosis and consequent Flatback Syndrome.

Thank you.

From: [mailto: ] On Behalf Of Sent: Friday, February 12, 2010 2:45 PM Subject: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Hi, Everyone --After batting this back and forth with co-moderator Maas, I am convinced that a flurry of individual letters -- a deluge, if possible! -- has a better chance of perking up interest than my lone little post regarding prevalence statistics, etc. And if you don't plan to write immediately, that's o.k. too -- why not a bunch of letters this week, next week, and the week after that? The more often "flatback" pops up in Dr. Oz's mail, the more likely he is to realize that this is a legitimate and not a medically rare or exotic topic -- a subject with a potentially large and concerned viewing audience.In considering what to write, feel free to use your personal story as you may already have written it for this group. But whether you do that, or write something entirely new, would you kindly send a copy to the group for reposting? This will give us a clear and precise idea of just how many members are taking part in this campaign, plus it will provide a fascinating new chronicle of our "collective narrative" to archive at the site.

..

February 15, 2010

Although most of us relate to this letter it is too long. The producers get

HUNDREDS of letters A DAY!!!! There needs to be a doctor attached to this

project as an authority. Attention has to be grabbed at sentence one.... After

getting a flatback authority... then maybe put a montage together from the

hundreds of letters on these sites. Just my thoughts...

February 15, 2010

Hi Andy,

I just re-read your message.....the mushroom reference was taken out of context. You were referring to a "pain process"....that "mushrooms"......LOL!!

Anyway.......I LOVE my new neck! The artificial disc replacement surgery was the best thing that has happened to me. Before I had the surgery, I was using Fentanyl patches or extended release morphine plus norco several times a day for breakthrough pain. I no longer need narcotics and feel like I have my life back. My spine doesn't bend....but I can walk, work and lead a fairly normal life again.

Have a good day!

M

RE: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

Thanks, Melody, for your kind words and for writing about your artificial discs. I've been curious about them - it's good to hear from someone who has them and likes them.

The idea of more surgery freaks me out, but I would certainly consider it if my upper back and neck pain became intolerable.

I'm not sure where you read about medicinal mushrooms - I didn't write about that.

Does Dr. Oz respond to all letters 'he' receives? That would be wild to hear back!

Andy

From: [mailto: ] On Behalf Of MELODY LANESent: Sunday, February 14, 2010 9:35 PM Subject: Re: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!