Flatback

[Guest guest]

Dear Peggy,

I have a date with a surgeon on October 23: he's going to fix my

flatback. I'm not very excited about it, but after going to Mayo, s

Hopkins, Lyons, Genoa and Paris, and after all of them said the only option

was surgery, I decided on the gentleman in Paris.

I was also told by all of them that one can live with it, but

that it will only get worse and one will grow gradually more incapacitated

- as I am already leaning forward, all my lower back, hip, and leg muscles

are doing work they shouldn't be doing. Once the back is out of alignment,

it throws everything else out, meaning future problems for other body parts.

Believe me I did not want to do this - in fact, after I was told

it had to be done, I waited two years before even seeing another surgeon.

Then I started touring till I found what I felt was the best (and since I

live in Europe) the most affordable solution.

By the way, for those who know me, I'll be in the hospital for 2

or so weeks and then will be taken to a rehab center near Versailles for

six (yes six) weeks - the French are strong believers in rehabilitation -

thanks to national health, my total copayment for this should amount to

about 600 USD. (The French system requires a copayment of 70 Francs a day

for the hospitalization - that's about 10 dollars I think). There will be

other expenses like phone and a TV if I want it, but they seem quite

reasonable. Was told to bring a bathing suit. Sounds almost like a vacation

- if I didn't have to go through the surgery.

Good luck on making your decision. Don't rush it and don't do it

unless you're convinced. I'm finally, I think, convinced, but I'm awfully

scared.

Best,

from Italy

[Guest guest]

This is the same thing my doctor told me, and I'm having it corrected Dec. 5.

My folks are wondering about the rehab part--I know when I had my Cesarean

section, I could hardly take care of my baby I was so exhausted, so I know

major surgery really knocks you for a loop. If my health insurance pays for

it, do others think I should go to a " skilled nursing facility " , as they

are called, for a bit, or go home? My 17-year old son and my two cats would

be home, and he could fix meals/grocery shop, etc. since he drives (my son,

not the cats! <grin>)

in the East Bay

At 08:52 AM 09/11/2000 +0200, Birch wrote:

>----------------------------------------------------------->

>

>Dear Peggy,

> I have a date with a surgeon on October 23: he's going to fix my

>flatback. I'm not very excited about it, but after going to Mayo, s

>Hopkins, Lyons, Genoa and Paris, and after all of them said the only option

>was surgery, I decided on the gentleman in Paris.

> I was also told by all of them that one can live with it, but

>that it will only get worse and one will grow gradually more incapacitated

>- as I am already leaning forward, all my lower back, hip, and leg muscles

>are doing work they shouldn't be doing. Once the back is out of alignment,

>it throws everything else out, meaning future problems for other body parts.

>

>

>

>

>

>

[Guest guest]

NB...

You should talk this over with the doctor. Not only would you need to

determine if your insurance covers rehab, but whether the doctor will

prescribe it. If your son will take care of the cats (feeding, changing

litter), do the laundry, and fix your meals for the first 3-4 weeks

you're out of the hospital, that's great. Rehab is often a very

depressing experience, where the care one receives can be marginal.

--

[Guest guest]

Wow !

Sounds like you've decided on having surgery and are ready to go! I like

the idea of 6 weeks rehab- wonderful.

I hope it will be a great success. Will be praying for you.....

Take care,

Sanette

On Mon, 11 Sep 2000 08:52:23 +0200 Birch <nabirch@...> writes:

> Dear Peggy,

> I have a date with a surgeon on October 23: he's going to

> fix my

> flatback. I'm not very excited about it, but after going to Mayo,

> s

> Hopkins, Lyons, Genoa and Paris, and after all of them said the only

> option

> was surgery, I decided on the gentleman in Paris.

> I was also told by all of them that one can live with it,

> but

> that it will only get worse and one will grow gradually more

> incapacitated

> - as I am already leaning forward, all my lower back, hip, and leg

> muscles

> are doing work they shouldn't be doing. Once the back is out of

> alignment,

> it throws everything else out, meaning future problems for other

> body parts.

> Believe me I did not want to do this - in fact, after I

> was told

> it had to be done, I waited two years before even seeing another

> surgeon.

> Then I started touring till I found what I felt was the best (and

> since I

> live in Europe) the most affordable solution.

> By the way, for those who know me, I'll be in the hospital

> for 2

> or so weeks and then will be taken to a rehab center near Versailles

> for

> six (yes six) weeks - the French are strong believers in

> rehabilitation -

> thanks to national health, my total copayment for this should amount

> to

> about 600 USD. (The French system requires a copayment of 70 Francs

> a day

> for the hospitalization - that's about 10 dollars I think). There

> will be

> other expenses like phone and a TV if I want it, but they seem quite

> reasonable. Was told to bring a bathing suit. Sounds almost like a

> vacation

> - if I didn't have to go through the surgery.

> Good luck on making your decision. Don't rush it and don't

> do it

> unless you're convinced. I'm finally, I think, convinced, but I'm

> awfully

> scared.

> Best,

> from Italy

>

>

>

>

________________________________________________________________

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[Guest guest]

Thanks, I did talk it over with my doctor, but she basically said recovery

time is so individual they can't tell.

Her assistant is already checking on the insurance part for me.

I know, my Mom hated the nursing care she got after she broke her hip. But

I valued my time in the hospital when I had complications with my

pregnancy. Sons (as well as cats!) don't always come when called either!

:-)

My concerns are mainly with whether I will be able to get up and go to the

bathroom and shower and dress without help.

At 03:00 PM 09/11/2000 -0700, you wrote:

>

>NB...

>

>You should talk this over with the doctor. Not only would you need to

>determine if your insurance covers rehab, but whether the doctor will

>prescribe it. If your son will take care of the cats (feeding, changing

>litter), do the laundry, and fix your meals for the first 3-4 weeks

>you're out of the hospital, that's great. Rehab is often a very

>depressing experience, where the care one receives can be marginal.

>

>--

>

>

[Guest guest]

----Original Message-----

From: & Peggy Greene [mailto:jpgreene@...]

Sent: September 11, 2000 8:18 PM

Scoliosis Treatment-owneregroups

Subject: Re: Re: flatback

If this is a legitimate question will you please post it for me? Feel free to

ask me to re-phrase it if necessary.

For those of you who have had surgery for flatback or who will be having surgery

soon, how will the surgery affect your intimate relationship with your

significant other? Will it be impossible or difficult to " you know " after

surgery? Because if that is the case I only want surgery as a last resort! My

husband is quite a bit older than me and I know we aren't going to have a lot of

years together (we'll only make it to our 25th Anniversary if he lives to be

79)! If surgery will end that part of our relationship, I don't want to have

surgery now after being married only a year! If surgery improves things, then I

would like to know that also. I'm not in pain or disabled enough at this point

that I need surgery right away. If having surgery before it gets too bad would

give me 20 great years of little pain, etc., then I would seriously consider

doing it next year or so. Otherwise I'll probably wait until it's absolutely

necessary. I hope I haven't offended anyone by asking such a question. I don't

need details, just want to know if " that " is better, the same or worse after

surgery. Maybe y'all want to know but everyone's been afraid to ask! :-) You

may answer privately if you so desire. Thanks!

Peggy Greene

JPG Unlimited

Antiques & Collectibles

jpgreene@...

[Guest guest]

Hi and all,

At the top of your message, I keep getting adds for visa cards. I seem

to get these a lot lately and I'm not sure if they are coming with

individual email messages from the scoliosis list, or if they are coming

as part of my larger email system (ie my internet provider). Is anyone

else getting these? Can someone please answer me?

Diane Popiuk

I'm using yours because there is one of these egroup things on it, but I

get them on many other messages as well.

NB wrote:

>

>

> Thanks, I did talk it over with my doctor, but she basically said recovery

> time is so individual they can't tell.

>

> Her assistant is already checking on the insurance part for me.

>

> I know, my Mom hated the nursing care she got after she broke her hip. But

> I valued my time in the hospital when I had complications with my

> pregnancy. Sons (as well as cats!) don't always come when called either!

>

> :-)

>

> My concerns are mainly with whether I will be able to get up and go to the

> bathroom and shower and dress without help.

>

>

>

> At 03:00 PM 09/11/2000 -0700, you wrote:

> >

> >NB...

> >

> >You should talk this over with the doctor. Not only would you need to

> >determine if your insurance covers rehab, but whether the doctor will

> >prescribe it. If your son will take care of the cats (feeding, changing

> >litter), do the laundry, and fix your meals for the first 3-4 weeks

> >you're out of the hospital, that's great. Rehab is often a very

> >depressing experience, where the care one receives can be marginal.

> >

> >--

> >

> >

[Guest guest]

I'd go for it. You can always go home if you don't like it.

Sanette

On Mon, 11 Sep 2000 12:34:54 -0700 NB <wrdtech@...> writes:

> This is the same thing my doctor told me, and I'm having it corrected

>............health insurance

> pays for

> it, do others think I should go to a " skilled nursing facility " , as

> they

> are called, for a bit, or go home? ..............

________________________________________________________________

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Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

This question is for those who had a Harrington rod fusion done in their teens

and early 20's and now, many years later, are facing certain or possible surgery

to correct " problems " :

How do you deal with all this? Half of me is glad to know about flatback

syndrome, what it is and how it is dealt with but the other half of me wishes I

had never heard of it! I feel like I was doing just fine and now I have

something more to worry about. Does anyone else feel this way???

Peggy Greene

JPG Unlimited

Antiques & Collectibles

jpgreene@...

[Guest guest]

I didn't have rods, just bone fusions, and if it wasn't for the future flat

back problems, I might not have the surgery in Dec., it sounds so awful!

(But mainly I feel mad that all of the doctors I've seen in the past few

years didn't diagnose it, or my other problems, correctly.)

But as my cousin always says, " Hey, you could get hit by a bus tomorrow.

Why worry about the future? "

:-)

I do have a lot of anger inside, though. I can't help watching the

commercials for the Olympics without grousing about how I didn't get to

have an athletic, flexible, healthy body...it's not fair, etc., etc.

Not good for me, I know, as I have become bitter about it. (And don't get

me started on the Gap ads with skinny young kids dancing to " My " music!!!)

in the East Bay

At 09:37 PM 09/13/2000 -0400, you wrote:

>This question is for those who had a Harrington rod fusion done in their

>teens and early 20's and now, many years later, are facing certain or

>possible surgery to correct " problems " :

>How do you deal with all this? Half of me is glad to know about flatback

>syndrome, what it is and how it is dealt with but the other half of me

>wishes I had never heard of it! I feel like I was doing just fine and now

>I have something more to worry about. Does anyone else feel this way???

>

>Peggy Greene

>JPG Unlimited

>Antiques & Collectibles

>jpgreene@...

>

>

>

>

>

[Guest guest]

(But mainly I feel mad that all of the doctors I've seen in the past few

years didn't diagnose it, or my other problems, correctly.)

I do have a lot of anger inside, though. I can't help watching the

commercials for the Olympics without grousing about how I didn't get to

have an athletic, flexible, healthy body...it's not fair, etc., etc.

in the East Bay

I can relate . Last night I was very, very depressed. My husband works

out of state and I've been discussing these issues with him over the phone.

Last night I heard " Why do you think you have flatback? Why are you trusting

these people? " etc. I told him the information I had regarding surgery was from

websites on scoliosis by doctors, etc. I told him I had printed the info and he

could read it when I visit him next week. Then I heard, " Honey, I don't have

time to read anything. I'm stressed out from my job and when I get home I just

want to sleep. " Well, " I don't have time to read " translates to " I don't care "

in my brain even though I know that's not true.

Last night I envisioned being in the doctor's office and I tell them I really

don't want to know if I have flatback. I'll just keep going " as is. " But yet I

don't want to end up being treated for hip, knee and neck problems when the real

trouble is in my back. I've never been healthy - never! I had to sit in the

corner in gym watching all the other kids. They would come over and say " You

are so lucky that you don't have to do anything. " They were the lucky ones! I

would've given anything to get up and run around!

Peggy Greene

JPG Unlimited

Antiques & Collectibles

jpgreene@...

[Guest guest]

Hi Peggy:

I knew less than a year later that my Harrington/Fusion

had failed. After five spine surgeries, tests too many

to count and numberous hospitalizations from having a

failed spine fusion, I've just accepted that people make

mistakes. I don't think my surgeon (or fellow or

resident or med student or whoever did the surgery in

real life at that teaching hospital) hated me and so he

did a crappy job or that he was a saddist or anything.

But I'm no longer surprised at the magnitude of what CAN

go wrong, not to say it will though. It's been 15 years

since my original surgery after which I was told there

was nothing I couldn't do (oh, but here's a pass out of

gym--that should have been a red flag eh?).

I often wonder what life will be like for me when I'm 80

(and I intend to make it that long). If this is a

prelude of things to come, I'm in for a world of hurt.

But humanity is strong and I'm part of that group. I've

set some goals from my scoli experience that I fully

intend to live up to or at least see put in to motion.

I am very glad to have a scoliosis list from which to

draw support and to freely give what I have to offer.

Dealing with scoliosis can be day by day or it can become

a lifelong endeavour. What ever it is for you is a very

personal decision.

>

> This question is for those who had a Harrington rod fusion done in their teens

> and early 20's and now, many years later, are facing certain or possible

surgery

> to correct " problems " :

> How do you deal with all this? Half of me is glad to know about flatback

> syndrome, what it is and how it is dealt with but the other half of me wishes

I

> had never heard of it! I feel like I was doing just fine and now I have

> something more to worry about. Does anyone else feel this way???

>

> Peggy Greene

> JPG Unlimited

> Antiques & Collectibles

> jpgreene@...

>

>

>

>

>

[Guest guest]

Well, the only other consolation is we don't have other complications, such

as heart problems, spina bifida, polio, etc.

I think part of this is the media--which lately shows only thin, healthy,

athletic young people on every commercial, and many t.v. shows.

Have to remind ourselves that there are many like us out there.

As for your husband, I told my therapist " why is it you believe me, and

nobody else knows how I feel, etc.? " and she said, " Because I listen to

you. " Try again with your husband when he isn't so overwhelmed. However,

I had to break up with my boyfriend because I've been so overwhelmed, he

has his own problems, and I really need one of those supportive men you see

(again, on t.v., maybe they don't exist in " real life " !)

I was told I couldn't play any contact sports, so had to take tennis and

modern dance instead of gym. However, my current doctor has a patient that

is allowed to play soccer! (After the fusion and rods surgery!) I told her

my original doctor is spinning in his grave!

:-)

At 08:51 AM 09/14/2000 -0400, you wrote:

>I can relate . Last night I was very, very depressed. My husband

>works out of state and I've been discussing these issues with him over the

>phone. Last night I heard " Why do you think you have flatback? Why are

>you trusting these people? " etc. I told him the information I had

>regarding surgery was from websites on scoliosis by doctors, etc. I told

>him I had printed the info and he could read it when I visit him next

>week. Then I heard, " Honey, I don't have time to read anything. I'm

>stressed out from my job and when I get home I just want to sleep. " Well,

> " I don't have time to read " translates to " I don't care " in my brain even

>though I know that's not true.

>

>Last night I envisioned being in the doctor's office and I tell them I

>really don't want to know if I have flatback. I'll just keep going " as

>is. " But yet I don't want to end up being treated for hip, knee and neck

>problems when the real trouble is in my back. I've never been healthy -

>never! I had to sit in the corner in gym watching all the other

>kids. They would come over and say " You are so lucky that you don't have

>to do anything. " They were the lucky ones! I would've given anything to

>get up and run around!

>

>Peggy Greene

>JPG Unlimited

>Antiques & Collectibles

>jpgreene@...

>

>

>

>

[Guest guest]

hi!

just wondering where this great doctor is???

TBTG!

~beth, mum to shane & grace

angelus@...

" all children have gifts, some just open them later than others. "

[Guest guest]

, thank you for sharing your resources with everyone! They are

wonderful! I've been studying many of them and feel I may even have learned

a bit about myself. This surely is a great group! Sincerely, Carole

----Original Message Follows----

From: Racine <lindaracine@...>

Reply-Scoliosis Treatment

scoliosis@..., @...,

Subject: Flatback

Date: Mon, 19 Nov 2001 21:17:11 -0800

Hi...

I found a few new web sites dealing with flatback, and thought I'd pass

them along:

http://www.gicd.org/f98fback.html

http://www.orthospine.com/greeting_card_flatback.html

http://www.orthospine.com/greeting_card_flatback.html

Regards,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Welcome, Su!

I knew some wonderful people from Aukland, years ago. Wish we had

kept in touch. was a geography graduate student at the

University of Wisconsin, and Cherry was his friend who visited for a

while and taught in a local " free school. " They would have been a few

years older than I was, and I am 52 now. They told me all about the

plight of the Maori and other little-known (to Americans, at least)

facts about New Zealand. I also met their friend Pierre when I was

in London, but I believe Pierre was from Australia. From what Cherry

told me, Australia is a very " different " place indeed, or at least

the men were not quite like the guys at home, according to her.

I was interested to learn of your unusual situation. It was my

understanding that flatback occurs only because of specific

hardware. Did you have any hardware implanted? I wish I could tell

you more about the origin of your problems. Maybe someone else here

has references or facts.

Best,

Eliana

> Hi everyone,

> So, as you will all know I am new to this list. I will tell you a

> little about myself.

> I live in Auckland, New Zealand and am suffering from Flatback after

> having a fusion in 1991 of the L4/5 L5/S1 for injury to these

discs. I

> have never had Scoliosis. Apparently it is very rare to have

Flatback

> from such a short fusion. Does anyone else have flatback from such

a

> short fusion? I would like to know exactly why I have ended up with

> Flatback when it usually occurs from much longer fusions. Doctors

are

> not very forthcoming with the answers which suggests to me that

error

> has occurred. I have been told that 60+% of our lumbar lordosis is

> within these two vertebrae so I guess that's a pretty good reason

when

> the surgeon left me in a prone position, i.e. didn't extend my

spine,

> whilst doing the fusion, to end up with the flatback. However, I am

told

> that there have been many double fusions done in this area of the

> spine. If that is so, why then is it so rare to end up with

flatback?

> Does this therefore mean that virtually all doctors doi?. Answers

> please if you can. Thanks. My website is at

> homepages.ihug.co.nz/~susang/Website%20Flatback%20Syndrome.htm

> If this doesn't work, do search in Google for Flatback Syndrome -

mine

> is the 'Website Flatback Syndrome' site.

>

> Cheers.

> Su

> New Zealand

[Guest guest]

Suzy: I visited your web site. That is exactly the

kind of information I was looking for. What a

fantastic site, full of information and references.

What a lot of work you did!!! Thank you for putting it

all together, making it accessible and putting the

link here so I could see it.

I want to educate myself about possible problems with

the harrington rod so that I can alert my primary care

physician to complications and get a referral to an

orthopedic surgeon familiar with h-rods. I want to

take the advice of people who have written to this

group about finding a doctor who has experience, and

not letting any doctor tell me any pain that I may

have is not related to the scoliosis, when they may

not know for sure.

The experience of people like yourself can serve as a

guide for people like me because you are kind enough

to share your experience and your knowledge to help me

to get the help I may need.

Thanks again....Kathleen

--- Suzy Habibi <shabibi@...> wrote:

> I think if you are not experiencing problems then

> why worry about it.

> Live your life as fully as you can and just take

> care of your spine and

> your health. The advice I have is be thankful that

> you aren't in pain

> and live every day to the fullest! Even with

> chronic pain since the

> original surgery in 1979 I have been as active as I

> can, and tolerate as

> much pain as I can while being active. Even with

> the pain and mild

> disability I am happy for how functional I am and I

> enjoy every single

> day, even bad pain days.There isn't a guarantee in

> life that it will be

> easy or pain free.

>

> The one complaint I have regarding Flatback and old

> H rods is that I was

> misdiagnosed for 16 years by docs who didn't

> understand our spines.

> This made me feel horrible, and I felt like a

> hypochondriac and that my

> pain didn't matter, so I did everything in spite of

> pain including

> teaching step aerobics. If the word had gotten to

> me sooner I would

> have behaved differently. My one wish is that

> orthopedists could

> recognize the signs of Flatback instead of passing

> us on. Through the

> internet I finally found a doc at UCSF last year.

>

> I get MANY emails generated by my web site from

> people who are

> suffering. By the way, the PROFESSIONAL research I

> have read has

> estimated Flatback can be as high as 40% in old H

> rod patients (I can

> find these studies if necessary). This doesn't mean

> that everyone will

> experience it EVER. I have been afraid to give out

> my web site address

> due to some false criticism, but I think the info

> might help out some on

> this list. I have compiled the web address of

> professional medical

> research regarding Harrington rods, Flatback,

> pseudarthosis and related

> conditions. My goal was to educate those who are

> having problems and I

> state clearly that not everyone is having any

> difficulties . Oh,

> please, prior to any new criticism please READ my

> site as I have

> gathered this information from the literature not

> from personal bias,

> and the gathering of this info took over six months.

> Again, my only goal

> was to EDUCATE those of us who slipped through the

> medical establishment

> for decades and still aren't getting to the right

> surgeons. This is a

> huge problem that needs to be addressed.

>

> http://www.microconn.com/scoliosis/

>

> Thanks to every one of you who share on this list.

> Suzy Habibi

>

>

>

__________________________________________________

[Guest guest]

Hi, Marcy. Welcome

So much for fusions absolutely stopping scoliotic progression.

I'm sorry to hear of your troubles. Your symptoms do sound very

flatback-like. A fused spine can indeed bend forward, very

gradually, not like it's a flexible un-fused spine. As I understand

it, this is because those of us with posterior-only fusions have the

front portions of our vertebrae un-fused, and the discs can gradually

compress, causing a forward-tilting trend in the spine.

When flatback is mild, we compensate by flexing the hips and knees.

I'm sure I had some flatback for years before I noticed a difficulty

standing erect, in my mid-thirties. How is your posture when viewed

from the side, with knees completely straightened?

That said, there are certainly other variables in scoliosis which

could be causing your symptoms, and an orthopedist with expertise

dealing with problems of scoliosis fusions should be able to sort it

out for you.

Whether or not you have flatback, any re-fusing of your older, fused

spine would be revision surgery, and should be handled by someone

very experienced in scoliosis revision. Most scoliosis surgeons do

mostly initial surgeries on young patients. Scoliosis revision is a

highly complex, specialized field. Any of the surgeons who are

recommended for flatback revision should be able to advise, and

hopefully, to help you.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, flatback, L5-S1 degeneration, etc.

> can any one help me i'm 40 years old and had a harrington rod put

> in when i was 12, taken out at 27 year of age, i'm starting to have

> trouble now with lower and upper back pain hip pain, knee pain neck

> pain, i have been to 3 doctors all have treated me with anti

> inflamotory drugs and thepary. until just recently i was never told

> about changes in my spine. when i had my firt surgury i was 40

> degrees, after 18, when the rod was taken out i was 20, than 9

years

> ago i was 35, now i have been told i have a 46 degree curve and a

> twisted trunk and that my spine was still moving. no one told me

> about flatback until i looked on the internet. i seem to have alot

of

> the sympthoms, i do have nerve damage and leakage to L4 and 5 of

the

> spine. i was told to stop the curve i would need surgery all over.

> i have a solid fussion no gaps so i could not possible bend my back

i

> do not bend forward like flatback describes but i have all the

other

> sympthoms, i do tilt forward a little. is there someone who has the

> same smypthoms with out the bending foward, should i go to a doctor

> who works on flatback, my doctors have never said anything about

> flatback. can someone decribe what there sympthoms felt like, in

> there back legs, hips.

> thank you

> marcy johnson

[Guest guest]

Hello Marcy,

Could you tell me why you had your harrington rods removed? I am

contemplating having mine removed for pain reasons and your situation

concerns me! Also, how did they remove them?

Thanks,

- Rodsapain

[Guest guest]

Hi Sharon

Thank you so much for answering my letter, it was very helpful.

I did look in the mirror with legs straight and I do tilt forward and my but sticks out like I'm pushing it out, and I have noticed that for a while. but now I realize that because you said you noticed you changes for a while before being diagnosis.

I do not have confidence with the doctors I have seen my original doctor is gone

so I keep trying new ones they all mention that I have thing like people in the group have but never tell me why. they say things like your getting older degenerative disease, you have leakage, inflamed, ect. I finally went to one doctor who told me my curve was getting worse and my trunk has twisted. he told me to stop it surgery,

but that was all he said, when I got home I was so upset I decided to look on the

internet to see what happens to us when we get older and I came across your group

so I looked up flat back oh my gosh everything clicked it was like I finally have answers. I'm so lucky I found this group while it is still early for me. I was so depressed and scared which I'm sure you were too that it helped so much to find others with the same problem, I feel so much better to know there are others out there, I'm also sorry for feeling that way because no one should have this. I have an appointment with a different doctor this week and depending what he tells me I might see one of the doctors people in the group have used I can tell this group is going to be so good to have. thank you so much for helping.

marcy

Re: flatback

Hi, Marcy. WelcomeSo much for fusions absolutely stopping scoliotic progression.I'm sorry to hear of your troubles. Your symptoms do sound very flatback-like. A fused spine can indeed bend forward, very gradually, not like it's a flexible un-fused spine. As I understand it, this is because those of us with posterior-only fusions have the front portions of our vertebrae un-fused, and the discs can gradually compress, causing a forward-tilting trend in the spine.When flatback is mild, we compensate by flexing the hips and knees. I'm sure I had some flatback for years before I noticed a difficulty standing erect, in my mid-thirties. How is your posture when viewed from the side, with knees completely straightened?That said, there are certainly other variables in scoliosis which could be causing your symptoms, and an orthopedist with expertise dealing with problems of scoliosis fusions should be able to sort it out for you.Whether or not you have flatback, any re-fusing of your older, fused spine would be revision surgery, and should be handled by someone very experienced in scoliosis revision. Most scoliosis surgeons do mostly initial surgeries on young patients. Scoliosis revision is a highly complex, specialized field. Any of the surgeons who are recommended for flatback revision should be able to advise, and hopefully, to help you.Sharon in Southern New HampshireCongenital scoliosis w/ spina bifida and other vertebral anomalies1971 Harrington rod fusion, flatback, L5-S1 degeneration, etc.> can any one help me i'm 40 years old and had a harrington rod put> in when i was 12, taken out at 27 year of age, i'm starting to have > trouble now with lower and upper back pain hip pain, knee pain neck > pain, i have been to 3 doctors all have treated me with anti > inflamotory drugs and thepary. until just recently i was never told > about changes in my spine. when i had my firt surgury i was 40 > degrees, after 18, when the rod was taken out i was 20, than 9 years > ago i was 35, now i have been told i have a 46 degree curve and a > twisted trunk and that my spine was still moving. no one told me > about flatback until i looked on the internet. i seem to have alot of > the sympthoms, i do have nerve damage and leakage to L4 and 5 of the > spine. i was told to stop the curve i would need surgery all over.> i have a solid fussion no gaps so i could not possible bend my back i > do not bend forward like flatback describes but i have all the other > sympthoms, i do tilt forward a little. is there someone who has the > same smypthoms with out the bending foward, should i go to a doctor > who works on flatback, my doctors have never said anything about > flatback. can someone decribe what there sympthoms felt like, in > there back legs, hips. > thank you> marcy johnsonAdult scoliosis support; focus on fixed sagittal imbalance. WE DO NOT ENDORSE ANY PRODUCT OR SERVICE ADVERTISED HERE AND HAVE NO CONTROL OVER ADS.

[Guest guest]

Hi

if I had to do it over I would not have let them take it out.

I have always had back pain, but my original surgeon used to give me anti inflammatory and therapy when I would see him. I could go for years without having to see him. then one day when I wanted to see him he was gone, so they gave me his partner who I trusted because he was his partner. he told me my rod was loose at the top and that was causing the pain. he told me it had to come out that you could not leave them in forever. I had it in for about 15 years so I let him take it out.

he told me after surgery he didn’t think he was going to get it out because my fusion grew like a tunnel and complete encased it, he said he had to chisel it out, I asked him why I needed it out if it was not loose, he than told me he took the time to stitch me instead of staples in other words (shut up). later I went to a different doctor who could not find a reason for it to have come out, when I went to get my x-rays from the other doctor, no one could find them, the hospital (sure)got a new computer system and they were lost. it should have never come out. than 5 doctors said unless there broke they should not come out. please check into this real good first. I felt so much better with it in. with it out I had more pain I felt more crooked, and my spine did move. if you don’t have to get it out DON’T. please let me know what you do and how it turns out for you good luck.

marcy

Re: flatback

Hello Marcy,Could you tell me why you had your harrington rods removed? I am contemplating having mine removed for pain reasons and your situation concerns me! Also, how did they remove them?Thanks, - RodsapainAdult scoliosis support; focus on fixed sagittal imbalance. WE DO NOT ENDORSE ANY PRODUCT OR SERVICE ADVERTISED HERE AND HAVE NO CONTROL OVER ADS.

[Guest guest]

Hi, Marcy

I'm glad if I've been of some help to you. My butt sticks out too,

and sometimes I wonder how much is flatback and how much is

extra " padding " . (Nope, just checked and it's mostly muscle.)

It can be very frustrating not knowing which doctor to go to. These

web sites have been invaluable to me, too. Have you seen the other

flatback site, " Salvaged Sisters of Scoliosis " ? There's a list of

revision surgeons there, under the heading " Who and Where are the

Docs? " I'm sure the list is not complete, and there may be another

one somewhere, but it could be a start to finding someone reasonably

near you. I am fortunate enough to live within an hour's drive of

the Boston surgeon that Eliana regards so highly. She traveled from

Chicago to have him perform her revision surgery. Since he is the

only such specialist in New England, I will probably get 1 or 2

opinions from out-of-area specialists before actually getting

surgery, if I do have it done. There are few enough revision

specialists that some people actually do travel long distances to get

the care they need.

Here's the link to Salvaged Sisters:

http://forums.delphiforums.com/adultscoliosis/messages/?

start=Start+Reading+%3E%3E

You will probably have to click on the word " all " to find the folder

on the doctors. It's a quirky Delphi forum and can be a little

tricky to navigate at first.

Good luck.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, flatback, L5-S1 degeneration, etc.

> > can any one help me i'm 40 years old and had a harrington rod

put

> > in when i was 12, taken out at 27 year of age, i'm starting to

have

> > trouble now with lower and upper back pain hip pain, knee pain

neck

> > pain, i have been to 3 doctors all have treated me with anti

> > inflamotory drugs and thepary. until just recently i was never

told

> > about changes in my spine. when i had my firt surgury i was 40

> > degrees, after 18, when the rod was taken out i was 20, than 9

> years

> > ago i was 35, now i have been told i have a 46 degree curve and

a

> > twisted trunk and that my spine was still moving. no one told

me

> > about flatback until i looked on the internet. i seem to have

alot

> of

> > the sympthoms, i do have nerve damage and leakage to L4 and 5

of

> the

> > spine. i was told to stop the curve i would need surgery all

over.

> > i have a solid fussion no gaps so i could not possible bend my

back

> i

> > do not bend forward like flatback describes but i have all the

> other

> > sympthoms, i do tilt forward a little. is there someone who has

the

> > same smypthoms with out the bending foward, should i go to a

doctor

> > who works on flatback, my doctors have never said anything

about

> > flatback. can someone decribe what there sympthoms felt like,

in

> > there back legs, hips.

> > thank you

> > marcy johnson

>

>

>

>

[Guest guest]

Dear Marcy,

You have mentioned you have " leakage " .... what is is? I don't understand

what is leaking. Could you explain this? Thanks in advance.

from Italy

[Guest guest]

Hi

I was told L4 andL5 are losing the fluid from in-between them. the doctor told me we have fluid in-between each vertebrae and when it all leaks out the vertebrae compress.

this was how it was explained to me.

Marcy

Re: Re: flatback

Dear Marcy,You have mentioned you have "leakage".... what is is? I don't understandwhat is leaking. Could you explain this? Thanks in advance. from ItalyAdult scoliosis support; focus on fixed sagittal imbalance. WE DO NOT ENDORSE ANY PRODUCT OR SERVICE ADVERTISED HERE AND HAVE NO CONTROL OVER ADS.

[Guest guest]

Hi

Thank you for the welcome. this group has helped me tremendously already, today I went to a different doctor not one who specializes in this because I'm having trouble finding one in Chicago. but he never mentioned flatback today until I asked, I asked only because people in this group have told me only doctors that do this surgery can truly diagnose this. so this group has made me an informed patient thank goodness or I would have walked out of there still not knowing. after I asked him he said yes you do have flatback and than used a plum line to confirm it. but he said I did not have it so bad that I need surgery. well thanks to all of you I will not except just his opinion, because I thought the earlier you found it the better, I already have a lot of the symptoms so I will find the right doctor now and I owe the thanks to people in this group.

Thank you

marcy marcyljohnson@...

Re: flatback

Hi, Marcy. WelcomeSo much for fusions absolutely stopping scoliotic progression.I'm sorry to hear of your troubles. Your symptoms do sound very flatback-like. A fused spine can indeed bend forward, very gradually, not like it's a flexible un-fused spine. As I understand it, this is because those of us with posterior-only fusions have the front portions of our vertebrae un-fused, and the discs can gradually compress, causing a forward-tilting trend in the spine.When flatback is mild, we compensate by flexing the hips and knees. I'm sure I had some flatback for years before I noticed a difficulty standing erect, in my mid-thirties. How is your posture when viewed from the side, with knees completely straightened?That said, there are certainly other variables in scoliosis which could be causing your symptoms, and an orthopedist with expertise dealing with problems of scoliosis fusions should be able to sort it out for you.Whether or not you have flatback, any re-fusing of your older, fused spine would be revision surgery, and should be handled by someone very experienced in scoliosis revision. Most scoliosis surgeons do mostly initial surgeries on young patients. Scoliosis revision is a highly complex, specialized field. Any of the surgeons who are recommended for flatback revision should be able to advise, and hopefully, to help you.Sharon in Southern New HampshireCongenital scoliosis w/ spina bifida and other vertebral anomalies1971 Harrington rod fusion, flatback, L5-S1 degeneration, etc.> can any one help me i'm 40 years old and had a harrington rod put> in when i was 12, taken out at 27 year of age, i'm starting to have > trouble now with lower and upper back pain hip pain, knee pain neck > pain, i have been to 3 doctors all have treated me with anti > inflamotory drugs and thepary. until just recently i was never told > about changes in my spine. when i had my firt surgury i was 40 > degrees, after 18, when the rod was taken out i was 20, than 9 years > ago i was 35, now i have been told i have a 46 degree curve and a > twisted trunk and that my spine was still moving. no one told me > about flatback until i looked on the internet. i seem to have alot of > the sympthoms, i do have nerve damage and leakage to L4 and 5 of the > spine. i was told to stop the curve i would need surgery all over.> i have a solid fussion no gaps so i could not possible bend my back i > do not bend forward like flatback describes but i have all the other > sympthoms, i do tilt forward a little. is there someone who has the > same smypthoms with out the bending foward, should i go to a doctor > who works on flatback, my doctors have never said anything about > flatback. can someone decribe what there sympthoms felt like, in > there back legs, hips. > thank you> marcy johnsonAdult scoliosis support; focus on fixed sagittal imbalance. WE DO NOT ENDORSE ANY PRODUCT OR SERVICE ADVERTISED HERE AND HAVE NO CONTROL OVER ADS.