So, are there any real stats on this flatback thingy?

January 11, 2006

Dear in Austin,

I am a person who still lives with my Harrington Rod/Luque Rod setup (T6 to L5). I feel that the surgeons have lost interest in me because I am now 71. I only had the surgery when I was 57! Believe me, that may make me sound awfully old but, inside me is the same person that has always been there. Yes, I lean forward and, yes, I do use some devices to help me keep moving. If I were to have the best Christmas/birthday present in the world, it would be for one of these gurus to tell me that they thought they could do a successful revision surgery on me. Instead, they hem and haw, and leave me feeling nowhere. I do get a lot of help from my Pain Clinic, and from the doctors who originally sent me there. I could probably name any painkiller I wanted, and successfully get it. However, that is not what I want! I want what you want......to know what is ahead for me.

I am not really an unhappy person, however! We have had four beautiful (now fully grown) children, before the surgery. Actually, I have had a very nice life, all things considered. It's just, like everyone else, I would really like to be perfect. I haven't been that in years, and I probably never will be again.

BUT, if you can make it to this point, have, and educate a couple of kids (with your husband's help) and know that your life has really meant something, I think that you would feel fulfilled. I'm still curious about the future, and would like my children and grandchildren to live a bit closer but, in general, I am very satisfied with my life. So, maybe you can be 71, or 81, or even 91. It all depends upon what it is you are after, right?

I wish you peace, a painfree life, children, and the ability to provide for them. It is all worth it, no matter how serious our curves, etc.

with love,

Carole

January 11, 2006

Hi All -- Does anyone know how many HR survivors ultimately require

revision surgery? Is it 100% or are there some who have somehow

squeaked by, even as they reach a more advanced (sorry for that

word...) age. At 33 (fused from T3-L3 at 12), I'm certainly not

throwing in the towel but I am fearful of what teh future holds. I

know I've asked similar questions before but would like to know more

about the actual numbers, if anyone has them. Internet research has

been scanty and not clear.

Also, while I know everyone's situation is different (Cam, love your

caveat about varying mileage) what can someone expect when teh

flatback is in full swing (excuse the pun) and the pain and numbness

are enough to require pain treatment but not completely debilitating.

Thoughts on how many good years I have left?

If anyone knows of any stats, feel free to send them my way...

Austin, TX

January 11, 2006

Hi ,

That is a good question...I will be surprised if anyone will be able

to clarify that for you...although I think I have heard say

that not everyone with a HR will require further surgery. I haven't

seen any specific numbers on my many meanderings through the

studies....but my personal, unsubstantiated belief is that " there

are only those that have and those that will " . Or should I qualify

that and say there are those that " will " if they can?

Some caveats probably apply when I say that. I mean people that had

the original Harrington Rods installed in the 60's 70's and early

80's to L-4 or L-5....not the many later iterations of rods that are

referred to as HR's in that same Kleenex vs. tissue kind of way. And

I say early 80's because it seems that the awareness was dawning in

the early 80's that flatback was a possible outcome of those fused

to L-4...so I think the thinking changed and they were less likely

to go as " long " as they had been. I don't think everyone finds the

flatback effects as obtrusive in their lives and I think flatback

without disc heriation is probably managable pain wise.

Some people can re-prioritize their lives in a way so as to avoid

surgery. Some people find out too late or wait so long that other

conditions can make them bad surgical risks for this long, grueling

surgery.

I imagine since you are right on the borderline it makes you wonder

with every little twinge. But did you actually get a diagnosis

of " flatback " or are you mostly thinking you are going to have to

manage/baby your lower discs right now? Post revision I feel the

same way about my S-1 joints...from here on in I am resolved to

avoid needless stress when possible. So I try to think through the

body mechanics or various activities. And I worry about the discs

even above my fusion...so it pays for everyone to find out what the

elements of disc health are and work it. I don't think anyone will

be surprised that those are generally believed to be hydration (and

rest so the discs can take up water)and strong supporting musclature.

So, since you found out about all this business earlier than many

and may be able to take all those preemptive steps (weight control,

stong supporting muscles,appropriatly stretched

muscles,hydration/nutrition) and since you are fused only to L-

3....maybe you will escape, or escape long enough for a therapy to

develop that safely will retain motion in your lower spine. Just as

a very general statement...it seems to me that most of the members

of the various internet groups I have read on this subject seem to

find they are hitting a " wall " or either pain or disability in their

40's...assuming they didn't have any earlier issues.

When I spoke with my doctor and was asking if he thought going

almost 38 years without any problems was " pretty good " ..he seemed to

indicate that he thought that was a pretty decent run. He also

wasn't shocked that I was seeking help....so I guess I read between

the lines that most of us are headed for some level of problems

below long fusion.

I only stayed in that agony/painful place for a relativly short

period of time. I could not imagine living out the rest of my

natural life if I could not get the relief that came with revision.

My heart goes out to anyone who is living in that kind of pain. Pain

control is still only a half understood art...so even there, I doubt

you will be able to find a study that quantifies the kind of pain

that flatback yields and what the management of just the pain means

in terms of quality of life. I am guessing Carole M. and others can

speak best to that. I chickened out. I went for surgery. Now...how

long will this last?

Plan for the worst...hope for the best.

Cam

The usual caveats apply in this post...I am not a doctor, I have had

no medical training, I am just expressing my own opinions.

January 11, 2006

Cam - I applaud you. Your words are beautifully said, and in a most

espressive manner.....a manner that I have yet been able to apply to

my own words when discussing my 'back problem'. Thank you for your

knowledge, and your ability to aptly verbalize this to others!

Fondly,

~CA ~

>

> Hi ,

> That is a good question...I will be surprised if anyone will be

able

> to clarify that for you...although I think I have heard say

> that not everyone with a HR will require further surgery. I

haven't

> seen any specific numbers on my many meanderings through the

> studies....but my personal, unsubstantiated belief is that " there

> are only those that have and those that will " . Or should I qualify

> that and say there are those that " will " if they can?

>

> Some caveats probably apply when I say that. I mean people that

had

> the original Harrington Rods installed in the 60's 70's and early

> 80's to L-4 or L-5....not the many later iterations of rods that

are

> referred to as HR's in that same Kleenex vs. tissue kind of way.

And

> I say early 80's because it seems that the awareness was dawning

in

> the early 80's that flatback was a possible outcome of those fused

> to L-4...so I think the thinking changed and they were less likely

> to go as " long " as they had been. I don't think everyone finds

the

> flatback effects as obtrusive in their lives and I think flatback

> without disc heriation is probably managable pain wise.

>

> Some people can re-prioritize their lives in a way so as to avoid

> surgery. Some people find out too late or wait so long that other

> conditions can make them bad surgical risks for this long,

grueling

> surgery.

>

> I imagine since you are right on the borderline it makes you

wonder

> with every little twinge. But did you actually get a diagnosis

> of " flatback " or are you mostly thinking you are going to have to

> manage/baby your lower discs right now? Post revision I feel the

> same way about my S-1 joints...from here on in I am resolved to

> avoid needless stress when possible. So I try to think through the

> body mechanics or various activities. And I worry about the discs

> even above my fusion...so it pays for everyone to find out what

the

> elements of disc health are and work it. I don't think anyone will

> be surprised that those are generally believed to be hydration

(and

> rest so the discs can take up water)and strong supporting

musclature.

>

> So, since you found out about all this business earlier than many

> and may be able to take all those preemptive steps (weight

control,

> stong supporting muscles,appropriatly stretched

> muscles,hydration/nutrition) and since you are fused only to L-

> 3....maybe you will escape, or escape long enough for a therapy to

> develop that safely will retain motion in your lower spine. Just

as

> a very general statement...it seems to me that most of the members

> of the various internet groups I have read on this subject seem to

> find they are hitting a " wall " or either pain or disability in

their

> 40's...assuming they didn't have any earlier issues.

>

> When I spoke with my doctor and was asking if he thought going

> almost 38 years without any problems was " pretty good " ..he seemed

to

> indicate that he thought that was a pretty decent run. He also

> wasn't shocked that I was seeking help....so I guess I read

between

> the lines that most of us are headed for some level of problems

> below long fusion.

>

> I only stayed in that agony/painful place for a relativly short

> period of time. I could not imagine living out the rest of my

> natural life if I could not get the relief that came with

revision.

> My heart goes out to anyone who is living in that kind of pain.

Pain

> control is still only a half understood art...so even there, I

doubt

> you will be able to find a study that quantifies the kind of pain

> that flatback yields and what the management of just the pain

means

> in terms of quality of life. I am guessing Carole M. and others

can

> speak best to that. I chickened out. I went for surgery. Now...how

> long will this last?

>

> Plan for the worst...hope for the best.

>

> Cam

>

> The usual caveats apply in this post...I am not a doctor, I have

had

> no medical training, I am just expressing my own opinions.

>

January 12, 2006

Dear ,

I read somewhere that approx 40 percent of Harrington Rod patients require

further surgery( Revision). I can't imagine how they would approx that since

many of us survivors are now in our forties when most of the complications

of that surgery hit. I also imagine that onset of troubles vary widely,

depending on your age when you had the original surgery, lifestyle( how kind

you were to your back).I had my Harrington Rod surgery at 14 in 1973, and

sought surgical help in 2000, twenty seven years later. Looking back I had

troubles years earlier, but couldn't find a doc that knew what was wrong.

Just when or if symptoms will happen to you, who knows for sure, but as in

all things it's good to be aware. Wish I had a clue of what " Might " be

coming so I could have been kinder to my spine. I also would have more

preventive, would have kept my weight under better control. You are lucky

to have more knowledge than I had before hand, you can look at it like

people who have diabetes in their family, you know it maybe out there, so

you know what to look for, and how to live your life in a manner that will

keep it at bay for as long as possible. There also is the train of thought

that no matter what you do that area below that long fusion will have

adverse changes. I think that helping yourself to be as well as possible

can't hurt, maybe will put off surgery, or you might not ever need it. And

if you get to the point you need surgery, keeping your weight down, keeping

in as good of shape as possible, will help your surgical outcome, and your

recovery. Also from being here you will know the names of good doc's across

the country, you won't have to see doc's that don't have a clue like I did.

Be prepared, it's a motto for something, really good advice I think, and

know I'm not a doc, just someone who's been through it.

Colorado Springs

[ ] So, are there any real stats on this flatback

thingy?

> Hi All -- Does anyone know how many HR survivors ultimately require

> revision surgery? Is it 100% or are there some who have somehow

> squeaked by, even as they reach a more advanced (sorry for that

> word...) age. At 33 (fused from T3-L3 at 12), I'm certainly not

> throwing in the towel but I am fearful of what teh future holds. I

> know I've asked similar questions before but would like to know more

> about the actual numbers, if anyone has them. Internet research has

> been scanty and not clear.

>

> Also, while I know everyone's situation is different (Cam, love your

> caveat about varying mileage) what can someone expect when teh

> flatback is in full swing (excuse the pun) and the pain and numbness

> are enough to require pain treatment but not completely debilitating.

> Thoughts on how many good years I have left?

>

> If anyone knows of any stats, feel free to send them my way...

>

> Austin, TX

>

> scoliosis veterans * flatback sufferers * revision candidates

>

January 12, 2006

Hi ...

My understanding is that no one has a clue how many people have

Harrington rods, so there's no way of knowing what percentage of

people have had to have additional surgery. One well known specialist

told me that they thought it was probably around 15%. I do know

several people with Harrington rods implanted to their lower lumbar

spine who claim to have no back pain.

--

>

> Hi ,

> That is a good question...I will be surprised if anyone will be able

> to clarify that for you...although I think I have heard say

> that not everyone with a HR will require further surgery. I haven't

> seen any specific numbers on my many meanderings through the

> studies....but my personal, unsubstantiated belief is that " there

> are only those that have and those that will " . Or should I qualify

> that and say there are those that " will " if they can?

>

> Some caveats probably apply when I say that. I mean people that had

> the original Harrington Rods installed in the 60's 70's and early

> 80's to L-4 or L-5....not the many later iterations of rods that are

> referred to as HR's in that same Kleenex vs. tissue kind of way. And

> I say early 80's because it seems that the awareness was dawning in

> the early 80's that flatback was a possible outcome of those fused

> to L-4...so I think the thinking changed and they were less likely

> to go as " long " as they had been. I don't think everyone finds the

> flatback effects as obtrusive in their lives and I think flatback

> without disc heriation is probably managable pain wise.

>

> Some people can re-prioritize their lives in a way so as to avoid

> surgery. Some people find out too late or wait so long that other

> conditions can make them bad surgical risks for this long, grueling

> surgery.

>

> I imagine since you are right on the borderline it makes you wonder

> with every little twinge. But did you actually get a diagnosis

> of " flatback " or are you mostly thinking you are going to have to

> manage/baby your lower discs right now? Post revision I feel the

> same way about my S-1 joints...from here on in I am resolved to

> avoid needless stress when possible. So I try to think through the

> body mechanics or various activities. And I worry about the discs

> even above my fusion...so it pays for everyone to find out what the

> elements of disc health are and work it. I don't think anyone will

> be surprised that those are generally believed to be hydration (and

> rest so the discs can take up water)and strong supporting musclature.

>

> So, since you found out about all this business earlier than many

> and may be able to take all those preemptive steps (weight control,

> stong supporting muscles,appropriatly stretched

> muscles,hydration/nutrition) and since you are fused only to L-

> 3....maybe you will escape, or escape long enough for a therapy to

> develop that safely will retain motion in your lower spine. Just as

> a very general statement...it seems to me that most of the members

> of the various internet groups I have read on this subject seem to

> find they are hitting a " wall " or either pain or disability in their

> 40's...assuming they didn't have any earlier issues.

>

> When I spoke with my doctor and was asking if he thought going

> almost 38 years without any problems was " pretty good " ..he seemed to

> indicate that he thought that was a pretty decent run. He also

> wasn't shocked that I was seeking help....so I guess I read between

> the lines that most of us are headed for some level of problems

> below long fusion.

>

> I only stayed in that agony/painful place for a relativly short

> period of time. I could not imagine living out the rest of my

> natural life if I could not get the relief that came with revision.

> My heart goes out to anyone who is living in that kind of pain. Pain

> control is still only a half understood art...so even there, I doubt

> you will be able to find a study that quantifies the kind of pain

> that flatback yields and what the management of just the pain means

> in terms of quality of life. I am guessing Carole M. and others can

> speak best to that. I chickened out. I went for surgery. Now...how

> long will this last?

>

> Plan for the worst...hope for the best.

>

> Cam

>

> The usual caveats apply in this post...I am not a doctor, I have had

> no medical training, I am just expressing my own opinions.

>

January 12, 2006

Carole - you ARE perfect where it matters......in the heart.

Fondly,

~CA ~

>

> Dear in Austin,

>

> I am a person who still lives with my Harrington Rod/Luque Rod

setup (T6 to

> L5). I feel that the surgeons have lost interest in me because I

am now 71.

> I only had the surgery when I was 57! Believe me, that may make

me sound

> awfully old but, inside me is the same person that has always

been there. Yes,

> I lean forward and, yes, I do use some devices to help me keep

moving. If I

> were to have the best Christmas/birthday present in the world, it

would be

> for one of these gurus to tell me that they thought they could do

a successful

> revision surgery on me. Instead, they hem and haw, and leave me

feeling

> nowhere. I do get a lot of help from my Pain Clinic, and from

the doctors who

> originally sent me there. I could probably name any painkiller I

wanted, and

> successfully get it. However, that is not what I want! I want

what you

> want......to know what is ahead for me.

>

> I am not really an unhappy person, however! We have had four

beautiful (now

> fully grown) children, before the surgery. Actually, I have had

a very nice

> life, all things considered. It's just, like everyone else, I

would really

> like to be perfect. I haven't been that in years, and I probably

never will

> be again.

>

> BUT, if you can make it to this point, have, and educate a couple

of kids

> (with your husband's help) and know that your life has really

meant something,

> I think that you would feel fulfilled. I'm still curious about

the future,

> and would like my children and grandchildren to live a bit closer

but, in

> general, I am very satisfied with my life. So, maybe you can be

71, or 81, or

> even 91. It all depends upon what it is you are after, right?

>

> I wish you peace, a painfree life, children, and the ability to

provide for

> them. It is all worth it, no matter how serious our curves, etc.

>

> with love,

>

> Carole

>