Re: Re: Depressed! Seeking Ideas,Advice, or Encouragement

[Guest guest]

I am one of those who does not have Flatback and my one and only surgery was in

1966 in Toronto Ontario

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Sunday, May 16, 2010, 4:32 PM

 

Only allowing those before 2000 to join the group is a bit silly as there

are two kinds of Flat Back Syndrome according to Mina. One that starts

about 2 to 3 years from surgery and one that is about 20 to 30 years out from

surgery. I had the first one as I began having symptoms at age 15 after my

original surgery at age 12.

My understanding of Flat Back Syndrome is they are getting better at prevention

but haven't quite eliminated the problem. I know that's not what folks want to

hear but I have heard it enough on the various groups that I believe it's

correct. And if you consider the back, they have to work on a 3 dimensional

plane to eliminate the problem, and that's certainly has to be tough to do. I

think they still haven't got it correct but that's only a personal opinion based

on what I keep hearing. In the old days they didn't even bother trying to

prevent it as they didn't know that the problem could occur and that's why a lot

of us have it now. I remember reading as well on one of the other newsgroups

that the people developing flat back syndrome from the surgeries in the 70 - 90s

are 100 percent certain to develop some form of flat back syndrome. However I

know a few people, including a doctor here , that claim they have no symptoms.

So maybe that's a positive

sign that some surgeons got it right.

Here is what Mina wrote on the causes of Flat Back Syndrome:

" CAUSES OF FLATBACK SYNDROME: Flatback Syndrome has muliple causes, but it is

usually a direct consequence of spinal fusions performed for scoliosis. It has

become clear over the last decade that a direct relationship exists between

operations for scoliosis (specifically spinal fusion with correction of the

curvature by Harrington rod technique) as an adolescent in the 1960s, 1970s, and

1980s and the development of Flatback as an adult. The most common cause of

Flatback Syndrome in a scoliosis patient, thus, is from the accumulated

distraction forces of a Harrington Rod Spinal Hardware System implanted in the

1960s, 1970s and possibly 1980s. This spinal hardware, which is now considered

faulty and no longer being used, has been found over time to force an outward

shift of disks below the fusion. Flatback Syndrome can thus occur decades after

an adolescent or young adult has had a spinal fusion and is least expecting

further scoliosis problems.

Flatback Syndrome may also be congenital or a component of Adult Degenerative

Scoliosis, which is primarily a result of aging disks. In rare cases it can also

be caused by poorly-done surgery on non-scoliosis-related disk disorders such as

herniations, with treatment consisting of spinal fusions limited to two or three

vertebrae. This article addresses Flatback Deformity which comes specifically as

a consequence of Spinal Fusion for Scoliosis, although patients with the

condition caused by other factors may also find much of its information useful.

Flatback syndrome can also occur immediately after spinal fusion surgery if the

surgeon reduces the patient's degrees of lordosis to amounts which are

intolerable for the patient's to adjust. This is called Iatrogenic Flatback, or

that which is caused by poor techniques used in the medical intervention itself.

In the late 1980s, new spinal instrumentation was developed that made it

possible for the first time for surgeons to perform 3-D corrections of the

spine, allowing the alignment of scoliotic spines into a more normal

configuration in all three planes. In attempting such complicated manipulations,

however, spinal surgeons retained an emphasis on straightening the spine up the

middle of the back and did not fully appreciate the importance of maintaining

balance in the Sagittal Plane. Thus, the patient's lordosis (or back waist

curve) was often reduced to a degree that met the surgeon's standard for

" average, " but did not maintain the curve to which

the patient's body had adapted throughout his/her life up to that time. This

lack of understanding of the importance of maintaining the patient's original

lordosis curves produced most of the Flatback Syndrome cases that were induced

immediately after surgery (iatrogenic cases) in the 1980s.

While most spinal surgeons today are aware of the extreme consequences of

reducing the backwaist curve during spinal fusions, they are apparently still

not totally able to prevent Flatback Syndrome. Part of the reason for this

failure is that correction of a scoliotic spine that is malaligned in two or

three different planes is tricky, and correction consists of making compromises

in order to get the best overall results. Flatback Syndrome is particularly

problematic for patients who enter surgery with hyperlordosis, or a degree of

lordosis that is considered too high to be within the normal range. Flatback

occurs most often today in fusion extensions from the thoracic spine through the

lumbar region to the sacrum, in which a surgeon reduces the patient's lordosis

(back waist curve) too much with no " free " or unfused disks left to compensate

for the change.

In older scoliosis fusions, Flatback Syndrome can gradually occur from other

fusion-related causes such as failing instrumentation, pseudoarthrosis

(inability of the spine to solidly fuse at various locations), or collapse of

the anterior portion of the disks in a posterior-only fusion.

Differences Between Flatback Syndrome in the Harrington Rod Patient and

Iatrogenically (Surgically-Caused) Flatback Syndrome:

Harrington Rod-Induced Flatback:

1. Occurs gradually over time, allowing the body to adapt gradually to many of

the changes in lordosis until a critical point is reached where there are no

more ways for the body to compensate for the steadily reducing curve at the

backwaist.

2. Because of the gradual change in lordosis, symptoms may not be noticed for

10-20 years.

3. When at the 10-20 year point, patients realize they have become noticeably

deformed, with obvious leaning-forward postures that prevent them from even

raising their heads to look straight, making the condition easy for doctors to

diagnose.

Iatrogenically (Surgically-Induced) Flatback:

1. Occurs immediately on the operating table so that patients usually feel

unbalanced right away while noticing that they also look different and discover

they can't fit into previously-worn clothes--yet they are unable to determine

exactly what is " wrong. "

2. Since this form of Flatback occurs all at once, the body cannot adjust to the

huge sudden change of lordosis reduction, and symptoms begin occurring in 1-3

years rather than 10-20.

3. Since most cases of Iatrogenically-Induced Flatback are caused in scoliosis

patients who originally had hyperlordosis (see section below on Hyperlordosis in

the Spinal Fusion Patient), their new backwaist curves are NOT flat, but are

just reduced to an extent that their bodies cannot tolerate; therefore they do

not present as particularly deformed. (Compensatory knee bending and neck

craning, unconsciously performed by the patient, may indeed make such victims

look nearly normal, even to the trained eye.)

4. Because these Flatback patients do not appear deformed to most doctors--even

to scoliosis experts, who associate Flatback Syndrome with the " key " sign of

completely flat backwaists--these patients often spend many devastating years

going from doctor to doctor until they are able to obtain correct Flatback

diagnoses; in the meantime, these patients are often identified mistakenly as

psychiatric cases, leading to treatment with inappropriate medications and

therapies, accompanied by intense frustration. (This is why scoliosis patients

are advised to ALWAYS gather and retain their x-rays, because Iatrogenic

Flatback can only be 100% confirmed by spinal surgeons who can compare patients'

before and after x-rays to see their changed lordosis curvatures.)

5. Because patients with Iatrogenically-Induced Flatback cases do not appear as

" deformed, " there is a tendency on the part of doctors--even scoliosis

experts--to advise against corrective surgery even though their physical

symptoms, pain, and disabling aspects are just as severe as those Flatback

patients who " look " worse; therefore, their access to appropriate osteotomies

can be impeded. "

I am going to try and put the whole article on the file section of this group.

It's too long to post the entire thing.

If you want to join a Flat Back group try the Fiestyscoliosflatbackers group.

They are pretty accommodating and inclusive and they are always helpful.

>

> I have a question. I've always heard and read that flatback occurs in people

from earlier surgeries, as the website even says, 70s-90s. Well, I had my

surgery in 2005, and I had a good amount of correction as well as a good looking

surgery, or so I've been told by other surgeons. I had a pretty extreme revision

in 2008 due to lack of fusion in the L2-L4 area. Last October I had a couple

screws and a connector removed and the surgeon told me I had flatback. He said

he did not recommend surgery as it would be very extreme and not worth it to me.

I know I lean forward, and I have ever since my surgery. How is this possible? I

was going to log in to the flatback site you recommeded but they said it's for

people with surgeries pre-2000s.

>

>

>

>

> ________________________________

> From: Llweyn Friars <mad.monk@...>

> Scoliosis Treatment

> Sent: Fri, May 14, 2010 3:51:59 PM

> Subject: RE: Depressed! Seeking Ideas,Advice, or

Encouragement

>

>  

> Hi ,

>

> Try the group Flatback Revised,

> / , as Cam. and

> others have gone through revision surgery (some more than once), and offer

> great advise. There are others in the group that are on the journey to

> revision, too, so it is a great mix and terrific support. No question is a

> dumb one, except those not asked.

>

> If you are looking for a revision surgeon in your area, then I would suggest

> checking out Scoliosis Research Society, www.srs.org <http://www.srs.org/>

> , as your first stop in researching, but Flatback might be able to offer

> other suggestions, along with experience.

>

> I, myself, am on various boards to gain the most knowledge possible for my

> own situation, plus I run a Scoliosis Chapter in British Columbia, so I try

> to gain knowledge for my group. Good luck and I hope to see you on the

> Flatback Revised board.

>

> Llweyn

>

> _____

>

> From: Scoliosis Treatment

> [mailto:Scoliosis Treatment ] On Behalf Of kelizrm

> Sent: May-14-10 8:59 AM

> Scoliosis Treatment

> Subject: Depressed! Seeking Ideas,Advice, or

> Encouragement

>

> Hi,

> I am not new to this group but havent posted in a while. I just joined the

> Feisty Flatbacker group because those people are mostly revision patients

> and I need advice from people who have had revision at least once. I haven't

> gotten much response there yet. So I am going to just copy my intro to that

> group here...it is easier.

> Thanks.

>

> Hi,

> My name is . I live in SC. I have had 3 fusion surgeries and two

> hardware removal surgeries. My last one was the hardware removal in 08. I

> still have trouble sitting for a long period and/or standing for a long

> period, thus making a full time job impossible...

> This is a HUGE problem since I am trying to survive on my own without my

> husband. We just separated and I need to be able to support myself. Anyone

> with similar problems out there? I don't know anyone that has had as much

> trouble as I have, locally anyway. That is quite discouraging as I begin to

> wonder if I am just a wimp. I seriously don't think so. The only person I

> know who has had revision surgery locally had flatback due to the first

> surgery as a teenager and had her revsion done by the guy at Emory(

> Horton, since retired). She got good correction and seems to do very well.

> My

> fusion failed; my problem wasn't primarily flatback though there was some

> loss of lordosis.

> I want to find people who have had revision surgery. I

> went to Dr. Denis at Twin Cities Spine Center, thought I had a good surgeon.

> But after two revisions (fusion failed after first hardware removal) and

> very little curve correction, I don't know if he was so great or not.

> But...what do you do? Do you just keep going under the knife? Yikes, I don't

> think so. This is such a monumental surgery you

> don't undergo it unless it is a last resort. So I am trying to make do in my

> current condition. But working is killing me. I am working 20 hrs a week at

> a job that pays very little. I sit primarily and I hurt after a five-hour

> day. The pain is cumulative...meaning the more I sit the more I hurt. I lie

> down on the floor if it gets really bad, but there isn't much except reading

> that you can do lying down...plus you look like a nut-case. I am now back on

> the pain meds so I am exhausted and irritable when I get home at about 3 or

> 4 pm and I just sleep for a while.

> I quit work to stay home with kids 18 years ago, so although I have a degree

> in Industrial Engineering, I have been out of the job market for so long

> that I would almost be entry level if I tried to do that again, and who

> hires entry level people on a part time basis? Nobody.

> Sooo, I am trying to find someone with pain like mine that has managed to

> work and make a living. I am on disability but that is not enough to live

> on. I am trying to get alimony but who knows whether that is going to work -

> I am at the mercy of a judge. Plus, with the downturn in the economy my

> husband (soon to be ex) is suffering financially too.

> Thanks for any advice you might have.

>

>

>

[Guest guest]

 

Hi Dianne

Do u still live in toronto? I had my surgery done at toronto's sick kids in 1979

by Dr Bobecko.

Nice to have a fellow toronto native- so many people on here are from the

states.

Karyn

 

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Wednesday, May 19, 2010, 5:06 PM

 

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

Hi Karyn,

I'm another Toronto person on this group. Dr. Kostuik performed my surgery in

1975, T3-L1, at Toronto General. I'm currently being monitored by Dr.

at Toronto Western Hosp. How are you doing?

________________________________

From: Izarah Star <izarahstar@...>

Scoliosis Treatment

Sent: Wed, May 19, 2010 8:49:27 PM

Subject: Re: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Hi Dianne

Do u still live in toronto? I had my surgery done at toronto's sick kids in 1979

by Dr Bobecko.

Nice to have a fellow toronto native- so many people on here are from the

states.

Karyn

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Wednesday, May 19, 2010, 5:06 PM

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

So does your flatback cause you much pain and/or problems? I was so surprised

when I was told I have it. My big surgery was in 2005 and it was a good one. He

had a good front to back alignment. Then I had revision in 2008 where I was

fused to my sacrum. So I " m fused from T4-S1. When I went to have some hardware

removal I was told I have flatback, and I did notice that I lean forward and

have pain in my hips and knees that seemed like it gets worse when I walk. I'm

not considering surgery, I don't think I could survive a 6th surgery. But I'm

nervous about what the future may hold.

________________________________

From: <legerpj@...>

Scoliosis Treatment

Sent: Wed, May 19, 2010 6:06:10 PM

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

 

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

yes I did have the surgery in 1966 and have two stainless steel Harrinton Rods

the full length of my back.  I have looked at pictures others have posted and

my rods look nothing like theirs.  I am in the process of transferring my xrays

over to picture form so that they can be posted.  I was 16 at the time of

surgery so I had to go to Arthritic and Oropeadic hospital on Wesley St in

Toronto.

I have posted on this site before but some who are in pain have asked me why I

am on the site.  I do not put anyone down for their pain and I do feel sorry

for them.

Dr Joh Hall was my doctor-I was in the hospital for a month three weeks on a

stryker bed then I went home in a full body cast laying down in a station wagon

as I was not supposed to sit up for six months.  That did not last-I found a

way of getting out of bed after about a month--nothing stopped me after that- I

rode the Greyhound bus from my home to Toronto (2 Hours) to get the cast removed

and a full body brace put on-which I wore for six months.

I am very fortunate that I do not have pain and have never had any problems.

I live outside to Toronto in borough where I just retired as a

administrative secretary after 37 years. Now I work for " honey do " and love

it.  I have had my rods checked and they are still holding me straight and not

buried in my spine-my lung is holding its own after the rib was removed and I

carry a bone from my back side on my shoulder blade. Modern technology is

great.  I would like to stay in touch with others and maybe get together us

Canadian ones some day-I think it would be interesting

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Wednesday, May 19, 2010, 5:06 PM

 

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

I read that. It freaked me out. I don't lean way forward, but it's a definate

lean. And I have pain in my hips and sometimes my knees, my neck, and I also

have trouble with my jaw. I've always had a crooked jaw though. I was told it

goes hand in hand with a crooked spine, though I don't know if that's true. How

long have you had flatback, and did it start out more moderate and get

increasingly worse over the years? I do believe I got mine on the table, because

I noticed right away that I leaned forward. I thought it was just par for the

course. And my surgeon showed me what a great alignment he gave me. So, it is

confusing. I will do more research. I'm just wondering if it's inevitable that

I'll get worse, or if maybe this is as bad as it will get.

________________________________

From: <legerpj@...>

Scoliosis Treatment

Sent: Thu, May 20, 2010 4:49:10 PM

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

 

In my case I am in severe pain and totally disabled. The prospect for

improvement are zero. I lean well forward and have to use a cane to prevent my

falling on my face. I can walk for a little bit but not far. I require a

wheelchair for longer periods. Sitting is painful. Use of my arms are painful

because it has affected my upper back. I have TMJ (my jaw gets inflamed), and my

neck is starting to act up. All because of Flat Back Syndrome and because of the

position of my spine. I am better in the summer but the winters the pain and

disability can just be brutal.

If you're interested in reading a very well research article on Flat Back

Syndrome I posted it in the file section of this website...

Scoliosis Treatment/files/

Surgeons now have to consider Flat Back Syndrome when they do the surgery and

try to prevent it. They don't use the same techniques or instrumentation that

they used to. The trouble is that it took a lot of patients with Harrington

procedures 20 or 30 years to develop Flat Back Syndrome. They thought we'd be

fine too. I believe from what I have been reading that it's unlikely that it

will occur in the more recent surgeries but there are two kinds of Flat Back

Syndromes. One that manifests itself almost immediately and the other that takes

20 years to come out. I have heard on the other groups of individuals still

getting it. I have to say though I am no expert on this. I have it. I am

disabled because of it. I know what happened to me. But for the more modern

surgeries I haven't a clue. For that you have to go and research it yourself on

the other groups and ask around. Those with Harrington instrumentation compared

to those that have some of the newer

stuff might be like comparing apples to oranges. And as I said I am no expert

on it. I should also note that the quote by the NSF was concerning those that

had Harrington procedures and not the more modern surgeries.

If you had surgery in 2005 and have flat back syndrome you presumably got it

right on the operating table during the first surgery just like I did. (I have

the first kind. I started becoming disabled by the age of 16 although I lasted

until I was 39.) Anyway please read the article I have posted by Mina

as it's really an informative read and it explains all the difficulties you may

encounter.

> >

>

>

>

>

>

>

>

>

[Guest guest]

You shouldn't have to get used to it and the more I get immersed into the ever

changing life with scoliosis as an adult - just seems like more should be done

and more should be able to be done in this day and age. I am sooo sorry you have

suffered so greatly. Sara

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Date: Friday, May 21, 2010, 10:21 AM

 

Well I asked a surgeon the question about whether it will get worse and they

told me that it's impossible to say. I asked if he would improve and they

basically said no except that it's possible that the pain will decrease once I

start hitting 70 or later. I asked them why and they said they didn't know the

answer to that but that was their experience in it. I am not sure if that is

true or not because I haven't met anyone with Flat Back Syndrome that was of

that age.

I look at it this way. I had about 20 years where I did pretty much what I

wanted to do with only mild symptoms and pain. My symptoms started with pain at

about age 14 or 2 years from surgery. At that time I was in severe pain only a

few times a year. The rest of the time I had aches and pains that were

tolerable. Then it progressed and finally disabled me. That happened about 27

years from the surgery. When I asked at the time if it would get worse they just

shrugged and gave me the it's impossible to say answer. They said it may not. It

did get worse since then but I am now 40 years out from the original surgery. It

has been progressively getting worse in small increments since then. I am now 14

years out from where I became officially disabled and unable to work. So it's

been a fairly gradual thing. And I have a Harrington procedure so it might be

different with those with other instrumentation. I do know this year and in

particular February and March

were the worse months I have ever experienced but I am now back to the " normal "

level of pain and discomfort. So there are good times and bad times with this as

well. I am not that optimistic that I won't be in even worse shape in another 10

years but as it's fairly gradual I am getting use to it to some extent.

[Guest guest]

It is wonderful to hear success stories and wish more success stories were told.

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Wednesday, May 19, 2010, 5:06 PM

 

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

Thank you, , for all the info. I'm sorry you were so young when it started.

My pain didn't become disabling until I was 35. And then I waited 13 years to

have surgery. Now I'm 52 with 5 surgeries under my belt and I grateful that

inbetween the 2nd and the 3rd I had a year and a half almost free of pain. It

was amazing. I guess we have to take what we can get.

________________________________

From: <legerpj@...>

Scoliosis Treatment

Sent: Fri, May 21, 2010 8:21:03 AM

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

 

Well I asked a surgeon the question about whether it will get worse and they

told me that it's impossible to say. I asked if he would improve and they

basically said no except that it's possible that the pain will decrease once I

start hitting 70 or later. I asked them why and they said they didn't know the

answer to that but that was their experience in it. I am not sure if that is

true or not because I haven't met anyone with Flat Back Syndrome that was of

that age.

I look at it this way. I had about 20 years where I did pretty much what I

wanted to do with only mild symptoms and pain. My symptoms started with pain at

about age 14 or 2 years from surgery. At that time I was in severe pain only a

few times a year. The rest of the time I had aches and pains that were

tolerable. Then it progressed and finally disabled me. That happened about 27

years from the surgery. When I asked at the time if it would get worse they just

shrugged and gave me the it's impossible to say answer. They said it may not. It

did get worse since then but I am now 40 years out from the original surgery. It

has been progressively getting worse in small increments since then. I am now 14

years out from where I became officially disabled and unable to work. So it's

been a fairly gradual thing. And I have a Harrington procedure so it might be

different with those with other instrumentation. I do know this year and in

particular February and March

were the worse months I have ever experienced but I am now back to the " normal "

level of pain and discomfort. So there are good times and bad times with this as

well. I am not that optimistic that I won't be in even worse shape in another 10

years but as it's fairly gradual I am getting use to it to some extent.

Tha

[Guest guest]

The surgeries that were 5 days apart and ended with a screw in my hip, were

performed in Phoenix (by a surgeon who came highly recommended). It was Dr.

Berven of UCSF who " fixed " me. They are great at that place. I had flown in from

NM for a consultation, and I assumed I have to schedule the surgery and fly back

at a later date. But he they worked me in. He really heard me when I told him I

was suffering. I saw him on a Monday, CT scan on Tuesday (had to be sure I'd

fused from the last 2 surgeries, luckily I had). He found a broken screw that I

also had removed. So, Wednesday was pre-op, Thursday I had surgery. I flew home

on Sunday, and they did everything to arrange for my home flight. I only wish I

gone there for my revision surgery. I bet I wouldn't have needed that 5th

surgery.

________________________________

From: <linda.racine@...>

Scoliosis Treatment

Sent: Tue, May 25, 2010 9:46:33 AM

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

 

Hi Lida...

The surgeons at UCSF are routinely performing surgeries on 70 and 80 year olds,

2 to 4 days apart, and getting excellent results. Unfortunately, it sounds like

Randie has had a horrible experience. This is a great example of how wrong it

all can go. The risk of an outcome like Randie's is probably small, at least in

the hands of an excellent surgeon, but if you're one of the ones who has such an

outcome, statistics make no difference.

--

>

> Hello again, Randie. May I venture to say that no one should have two

> surgeries 5 days apart. Perhaps a 20 yr old but definitely not for the

> older person. You are right, they have done you in and I'm afraid that they

> only way for you to recuperate is if it were to possible to do so in the

> old-fashioned way: the patient goes away to a sanatorium high in the

> mountains and is prohibited from doing anything at all even if they are

> physically capable. In that way, once you have gotten into the rhythmn of

> not having to do anything or go anywhere the body begins to unwind.

>

> The way that most of us live is not good. We are forever doing doing doing.

> If not doing then planning what we are going to do once the surgery is over.

> In the old-fashioned way of recovering, once our minds had stopped railing

> against a new regimen and settled down, so did our bodies.

>

> Lida in London

>

>

> Re: Depressed! Seeking Ideas,Advice, or

> Encouragement

>

>

>

>

> I know exactly how you feel! I also have pain from sitting, standing, riding

> in a car, and basically just being alive. I went for 13 years of trying

> alternative methods before I had surgery. First I was fused at just L4-L5.

> Then T4-L4. I was doing well but after 2 years my rods broke and my curves

> and pain came back so I had revision surgery. I hadn't fused at L2-L4, so

> that was corrected in one surgery and I had a separate surgery where he went

> in through my side to fuse me from the front as well, and also I was cut low

> on my abdomen to fuse me to S1. Those 2 surgeries, 5 days apart, really did

> me in. Then, 18 mths later I had to have a screw that was in my joint

> removed. The pain of that screw made me miserable. Now I'm somewhat better

> but still have pain all the time plus I'm exhausted and depressed. Isolated.

> Scared. I collect disability and my mother and I share a house to make both

> our lives more managable, but I'm always scared of the future. I

> went back to school so I could start a home business, and I'm almost done

> with my accounting degree, but I " m so tired! I need 12 hours of sleep most

> of the time and even then I have trouble getting going.

>

> You're not a wuss, you're suffering from pain and recovering from surgeries.

> I don't have advice, I'm just letting you know that you're not alone.

>

>

>

>

>

[Guest guest]

Dear ,

I'm sorry that others here have said such things to you.  You are entitled to

your feelings, especially here!

 

I hope  you feel better soon.

 

Lj

From: <legerpj@...>

Subject: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

Scoliosis Treatment

Received: Wednesday, May 19, 2010, 5:06 PM

 

I believe the quote about the 100 percent was made by Joe O'Brien at the

National Scoliosis Foundation. At least that is what I recall reading on another

group. It was probably on the Fiesty group as that's the only other one I am

currently a member of.

I am aware of a few people locally that had early surgery that do not have any

symptoms of Flat Back Syndrome so I know that there are lucky individuals out

there. And these groups generally don't get a lot of the people with successful

surgeries visiting them because they are out enjoying themselves.

I am curious Dianne... did you have Harrington instrumentation put in in 1966?

That was a really early period for this stuff. I had my surgery in Montreal in

1970 and it was rather new there at the time. Or at least that is what I recall

from memory and what my parents have told me. I was 12 at the time. I remember

that I got into a car accident in England in 1976 and they had to send/fax my

x-rays to Texas to establish if the rods were in there correctly because they

had never seen the instrumentation that I had. The answer came back that they

were damaged but I was okay to travel but I had to have surgery on return to

Canada. So I had surgery about three months later. That's when the majority of

the rods were removed by Dr. Kostiuk. He left in a rod that couldn't be removed.

Then he tried again several years later when the Flat Back Syndrome started. So

he tried to get it out twice. And that stuck rod is the reason I can't have

further surgery.

>

[Guest guest]

Dear Randie,

After reading your note, I'm obligated to tell you that you may have

Charcot-Marie-Tooth.

Whoever told you that all those aches and pains go together with Scoli is

definitely onto something.  Please see a neurologist and tell him/her your

symptoms and mention this note.  There is a blood test that tests for about 27

types of CMT, the most common types.  BUT, a negative response is not always

accurate.  If that happens, you will need nerve conduction tests and an

electomylegram to determine if you have CMT for sure or not.

 

CMT is progressive.  Don't put off seeing a neurologist, Randie.  27% of

CMTers have scoli.

 

Lana CMT2 and Scoli

[Guest guest]

That sounds scary. I don't know what CMT is, but I'll look it up, and I'll have

the test. Thanks for the info

________________________________

From: Lana Jarvis <fyfer1949@...>

Scoliosis Treatment

Sent: Sun, June 6, 2010 4:19:00 PM

Subject: Re: Re: Depressed! Seeking Ideas,Advice, or

Encouragement

 

Dear Randie,

After reading your note, I'm obligated to tell you that you may have

Charcot-Marie-Tooth.

Whoever told you that all those aches and pains go together with Scoli is

definitely onto something.  Please see a neurologist and tell him/her your

symptoms and mention this note.  There is a blood test that tests for about 27

types of CMT, the most common types.  BUT, a negative response is not always

accurate.  If that happens, you will need nerve conduction tests and an

electomylegram to determine if you have CMT for sure or not.

 

CMT is progressive.  Don't put off seeing a neurologist, Randie.  27% of

CMTers have scoli.

 

Lana CMT2 and Scoli