Re: Early revision surgeries

[Guest guest]

This is the issue that frustrates me and I assume many of us. If they knew in 1983 that the harrington rod was faulty, then it seems to me that they must have had some idea there was a problem with this method in 1977 when I had my first surgery. I know there is no use looking back, but I have wondered about how much our doctors knew when they were doing our first surgeries. I just find it hard to believe that these very educated people didn't suspect that eliminating our normal kyphosis and lordosis was not a good idea. I guess I'm just grumpy this morning and find out that revisions were being done as early as 1983 just brings out my frustration.

Jeanne

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

Jeanne,You can say this again.  I had my HR's in 1986.  the only thing I can think of is that research was still relatively new? Or that perhaps new methods were still too unfamiliar?  Truthfully we don't know how long a revision lasts and for all we know in 20 years they will look back and say, we should be doing it a different way.  I suppose if people had problems then it was addressed " the new improved way " but for the rest of us it was best to go with what was really known at the time?  At least this is all I tell myself, again,  because there is nothing we can do about it now, it is what it is.

DebbieOn Tue, May 26, 2009 at 8:21 AM, Slinker <slinkers5@...> wrote:

This is the issue that frustrates me and I assume many of us.  If they knew in 1983 that the harrington rod was faulty, then it seems to me that they must have had some idea there was a problem with this method in 1977 when I had my first surgery.  I know there is no use looking back, but I have wondered about how much our doctors knew when they were doing our first surgeries.  I just find it hard to believe that these very educated people didn't suspect that eliminating our normal kyphosis and lordosis was not a good idea.  I guess I'm just grumpy this morning and find out that revisions were being done as early as 1983 just brings out my frustration.

 

Jeanne

 

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

 

Revision surgery for Flatback has been around longer than 6 years.  I had my revision surgery on Dec 2, 1997,

11 1/2 years ago. 

 

Bonnie

[Guest guest]

i agree and was on some chat room yrs ago where folks were saying thye were looking into class action suit for those surgeries clearly done when docs knew that fusion past L4 and some cases l3 and more were causign this flayback. My was done in CA in 1981 i was 13. They stopped it in 1984. i get p od too

Donna

310-595-6462

From: slinkers5@...Date: Tue, 26 May 2009 07:21:45 -0500Subject: Re: [ ] Re: Early revision surgeries

This is the issue that frustrates me and I assume many of us. If they knew in 1983 that the harrington rod was faulty, then it seems to me that they must have had some idea there was a problem with this method in 1977 when I had my first surgery. I know there is no use looking back, but I have wondered about how much our doctors knew when they were doing our first surgeries. I just find it hard to believe that these very educated people didn't suspect that eliminating our normal kyphosis and lordosis was not a good idea. I guess I'm just grumpy this morning and find out that revisions were being done as early as 1983 just brings out my frustration.

Jeanne

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

I hear so much anger in this post.   As I was looking back at my old records from 1978, I found a note predicting my current state. "Progression is quite likely and degenerative change later in life with a lateral spondylolisthesis"....   They knew the outcome wasn't a permanent solution, but who remembers what we are told as teenagers? I know most hip replacement surgeries done a few years ago were only anticipated to last 8 to 10 years.    I feel blessed for every day my h-rod held out, 30 years before I started having trouble. They did the best they could with the technology available.    I remember watching TV news one night in the mid 80's when they showed the new "surgeries". I freaked out watching the surgeries, but when they got to the results... I was so jealous. They got to walk hours after

surgery. No nine month CAST!   I know without the surgery, I would have been a crumpled, deformed mess. No husband, no beautiful children and maybe even dead of a punctured lung or heart. If anything, the original experience made me a stronger individual.    Please don't read this the wrong way, I want people to see the hope and possibilities. Anger is such a destructive influence to your well being. Although this is probably the best forum to get these felling out with other people who "get it"-Dyann

From: Bonnie <bonnie@.... com>Subject: [ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

 

Revision surgery for Flatback has been around longer than 6 years.  I had my revision surgery on Dec 2, 1997,

11 1/2 years ago. 

 

Bonnie

[Guest guest]

Jeanne and Donna,

I too was on boards years back where there was much discussion about this. Truly back in 73 when I had my Harrington placed, it was the golden standard in care, and I had to go from my town in Northern California to UCSF in San Francisco to have it placed, as back home I was scheduled to have an uninstrumented fusion with a cast for over a year. We looked at it as such a gift, the surgery, and no cast, a brace for six months, seemed way better than a cast.

Here's where I get upset, I've read in my reams of reading through the years that in 82, they knew the problems were cropping up with the Harrington and technique, but continued to place them way into the 90's. I know in my heart that they did the best they had at the time, BUT, when you start to see things falling apart, warn people, and maybe stop placing them, if not in the 80's, but surely into the 90's.

Was there a hardware system better, were there better techniques, I don't know. A case could be made that they didn't have anything better to replace it, I just don't know. I do believe they tried tweeking it through the years since they knew of the loss of Lordosis, some here may have had hardware systems that was supposed to correct it, but failed too.

My gripe, and I've said it often, is that we weren't warned we had a ticking timebomb in our backs. Still to this day, no recalls, warnings, etc, and you better be danged lucky a ortho you go to understands Flatback, or you could be like me, and have seen over 20 doc's before I got diagnosised. I started falling apart in 1984, and didn't get diagnosised till 2000. What a waste. I do know those very early revisions were tough, they were trying to figure out just how to handle our complicated cases, and many of those pioneers have had a lot more surgery trying to get it right. So all in all, I guess I'm glad that I got diagnosised and had revision further down the line, when they had a formula.

I know it's far more common for people to get diagnosised way faster than me now then when I was in the thick of it, but still we have gals diagnosising themselves from reading on the internet, or on sites like ours, and many still do get dismissed by docs.

Just how many of us will need to be revised, who knows, I've read as high as 40 percent, and I believe Peggy said that Dr. Hey's practice said that anyone who has a harrington would eventually need revision.

So my thought is, send out a warning, you see them all the time, make patients aware, so they can get to an ortho and be watched, as most of us had no idea of these problems till we had been in pain for years, and sought help. Common sence in my mind. Sometimes you feel like someones dirty secret. I found it odd in my first visit with Kumar in his notes it states that there was " No attorneys involved in this case", interesting hunh!

Colorado Springs

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

Dyann,

Grateful for that old surgery, you bet, but I get the anger, I've felt it myself, not only for my case but others coming after me. MANY of us didn't get as many good years as you, I got 11, and there were many who were put into Flatback as soon as they got up from H-rod surgery. Anger can change things, improve things, motivate those who can help to move in helping us. It's all in the expression.

I get the "best they could do thing", been told that a lot, and it's true, BUT, and it's a big but, how do we fix things. I don't know when your Harrington was placed, but when mine was placed, I was told, my foster parents were told, I WAS HEALED. A healed person lives their life differently than someone who's told they could have degenerative changes down the road.

I can't tell you all the crap I was told through my years (over 15), when I knew there was something awful going on with my back, and no one had an answer, I was told to live with it, some idiot wanted to remove one hook that wasn't even close to my spine( it had cut away from my spine years before), and one doc that basically thought I was nuts, and I'd better get some help ( mental)., as my fusions were fine, and nothing more could be done. One doc hinted that maybe I should have more surgery, but he wouldn't do it, and I shouldn't even think about it really, as it could kill me.

All I ask is that people with this hardware system be warned, watched, and not treated like someones ugly secret. I wrote a testimonial for Dr. Kumar's site years ago, where I described the problem that sent me to him, FLATBACK, and when I read it on the site, gee, Flatback wasn't in the description, like it was hard for them in the medical community to have the word Flatback used. Surprised me, as he was the one who diagnosised me, and the term is all through my medical office notes and surgical reports.

I guess it's all in how your life circumstances went, I'm glad my Harrington is in a bag at my house.

Colorado Springs

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

I hear what you are saying, however, I was not given any warnings at all. My mother and I both remember being told I was "cured" and that I could do anything I wanted. Once my healing time was up, I was given the go ahead to do ANYTHING. (Well, maybe not contact football.) I was seventeen at the time and I remember well what I was told and I was shown pictures of girls doing so many things after surgery, like ballet.

I do realize that new research and discoveries are always happening to improve on old medicine and technology. What is concerning is that there was knowledge that what they were doing would likely have consequences down the road and nothing was said about that, at least not to me or my mother and father. I mostly just wish I was told to be careful and to avoid certain activities as maybe that would have helped prevent some of what is happening to me now. Which gives me pause when I think about a future revision surgery... do I want to risk another problem down the road that they may or may not anticipate right now? The thing is, I can't undo a surgery. I guess right now my pain hasn't reached a point where I am desperate for relief that I'm willing to endure the pain and risk of a revision surgery. I can understand on my bad days how one can reach that point though. It's frightening to have to fear staying in pain or taking a risk that may not help, what a difficult decision many of us have to make.

All that being said, I am so very grateful for the 30 plus years of being "straight" and without pain. (Although I have a friend who did not get corrective surgery and she's doing better than I am right now and she has some serious curves!) But, we are all different and our bodies manage with what is happening to them in their own way.

Jeanne

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

and it is called gross neglignece when a patient issnt informed that a fair and proven amoutn of patients have experienced flatback or issues that may requie revision sugery instead they told us and parents we were lucky it was caught in time and this was goign to fix us, thats where legally i think we have issue wiht the contiued use of h rods with out full patient awareness that it could cause debiltating disease needing further treatment.

Donna

310-595-6462

From: .Kirkaldie@...Date: Tue, 26 May 2009 10:08:35 -0600Subject: Re: [ ] Re: Early revision surgeries

Jeanne and Donna,

I too was on boards years back where there was much discussion about this. Truly back in 73 when I had my Harrington placed, it was the golden standard in care, and I had to go from my town in Northern California to UCSF in San Francisco to have it placed, as back home I was scheduled to have an uninstrumented fusion with a cast for over a year. We looked at it as such a gift, the surgery, and no cast, a brace for six months, seemed way better than a cast.

Here's where I get upset, I've read in my reams of reading through the years that in 82, they knew the problems were cropping up with the Harrington and technique, but continued to place them way into the 90's. I know in my heart that they did the best they had at the time, BUT, when you start to see things falling apart, warn people, and maybe stop placing them, if not in the 80's, but surely into the 90's.

Was there a hardware system better, were there better techniques, I don't know. A case could be made that they didn't have anything better to replace it, I just don't know. I do believe they tried tweeking it through the years since they knew of the loss of Lordosis, some here may have had hardware systems that was supposed to correct it, but failed too.

My gripe, and I've said it often, is that we weren't warned we had a ticking timebomb in our backs. Still to this day, no recalls, warnings, etc, and you better be danged lucky a ortho you go to understands Flatback, or you could be like me, and have seen over 20 doc's before I got diagnosised. I started falling apart in 1984, and didn't get diagnosised till 2000. What a waste. I do know those very early revisions were tough, they were trying to figure out just how to handle our complicated cases, and many of those pioneers have had a lot more surgery trying to get it right. So all in all, I guess I'm glad that I got diagnosised and had revision further down the line, when they had a formula.

I know it's far more common for people to get diagnosised way faster than me now then when I was in the thick of it, but still we have gals diagnosising themselves from reading on the internet, or on sites like ours, and many still do get dismissed by docs.

Just how many of us will need to be revised, who knows, I've read as high as 40 percent, and I believe Peggy said that Dr. Hey's practice said that anyone who has a harrington would eventually need revision.

So my thought is, send out a warning, you see them all the time, make patients aware, so they can get to an ortho and be watched, as most of us had no idea of these problems till we had been in pain for years, and sought help. Common sence in my mind. Sometimes you feel like someones dirty secret. I found it odd in my first visit with Kumar in his notes it states that there was " No attorneys involved in this case", interesting hunh!

Colorado Springs

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

,

I agree completely. I also feel we should have been given all the information that was available at the time so that we could make an informed decision about our first surgeries. I do not believe that these doctors did not consider normal kyphosis and lordisis as necessary to healthy posture and mobility. They could not have been that clueless.

I'm not interested in lawsuits or anything of that nature, what I'd like is for all harrington rod patients to be given notice that they may have a condition that warrants testing and treatment. Don't leave us all out here wondering why our backs are giving us such trouble. I do advise anyone who is looking at a first time scoliosis surgery to look into after care, to find out what they need to do to preserve what is left of their mobile spine, and how to prevent as much deterioration as is possible.

Jeanne

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

oh i was told the EXACT thing as you, i meant to say at that point in time we shold have been told about flatback risk i was told i couldnt do gymnstiacs again but that was it, total bs i took totla care of my back never did anytihnign where i would fall etc and i think there is a law suit there for us some howThats why im hesitant on doing a second surgery and being revisin which is so risky more so than the first one im alone and i just cant go thfough any thing worse than the first one, and some say they had more than one revisiion

Donna

310-595-6462

From: slinkers5@...Date: Tue, 26 May 2009 11:41:27 -0500Subject: Re: [ ] Re: Early revision surgeries

I hear what you are saying, however, I was not given any warnings at all. My mother and I both remember being told I was "cured" and that I could do anything I wanted. Once my healing time was up, I was given the go ahead to do ANYTHING. (Well, maybe not contact football.) I was seventeen at the time and I remember well what I was told and I was shown pictures of girls doing so many things after surgery, like ballet.

I do realize that new research and discoveries are always happening to improve on old medicine and technology. What is concerning is that there was knowledge that what they were doing would likely have consequences down the road and nothing was said about that, at least not to me or my mother and father. I mostly just wish I was told to be careful and to avoid certain activities as maybe that would have helped prevent some of what is happening to me now. Which gives me pause when I think about a future revision surgery... do I want to risk another problem down the road that they may or may not anticipate right now? The thing is, I can't undo a surgery. I guess right now my pain hasn't reached a point where I am desperate for relief that I'm willing to endure the pain and risk of a revision surgery. I can understand on my bad days how one can reach that point though. It's frightening to have to fear staying in pain or taking a risk that may not help, what a difficult decision many of us have to make.

All that being said, I am so very grateful for the 30 plus years of being "straight" and without pain. (Although I have a friend who did not get corrective surgery and she's doing better than I am right now and she has some serious curves!) But, we are all different and our bodies manage with what is happening to them in their own way.

Jeanne

[ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

i hav emy old papers and in 81 no where does it read as to future expecatons but a full revoery and that was yrs late in late 71 and they stopped fusing past l4 in 84 so i think they knew. I just spoke to my original surgeons offfice today for a referrla for flatback surgery and she said yea we gets lots of call from his old patienets WOW thats speaks volumes

Donna

310-595-6462

From: dyanndiamond@...Date: Tue, 26 May 2009 09:00:57 -0700Subject: Re: [ ] Re: Early revision surgeries

I hear so much anger in this post.

As I was looking back at my old records from 1978, I found a note predicting my current state. "Progression is quite likely and degenerative change later in life with a lateral spondylolisthesis"....

They knew the outcome wasn't a permanent solution, but who remembers what we are told as teenagers? I know most hip replacement surgeries done a few years ago were only anticipated to last 8 to 10 years.

I feel blessed for every day my h-rod held out, 30 years before I started having trouble.

They did the best they could with the technology available.

I remember watching TV news one night in the mid 80's when they showed the new "surgeries". I freaked out watching the surgeries, but when they got to the results... I was so jealous. They got to walk hours after surgery. No nine month CAST!

I know without the surgery, I would have been a crumpled, deformed mess. No husband, no beautiful children and maybe even dead of a punctured lung or heart. If anything, the original experience made me a stronger individual.

Please don't read this the wrong way, I want people to see the hope and possibilities.

Anger is such a destructive influence to your well being. Although this is probably the best forum to get these felling out with other people who "get it"

-Dyann

From: Bonnie <bonnie@.... com>Subject: [ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

bad typing in late 84 they didnt fuse past l4 i had mine in 81 and was fused past l4 into 5 s1

Donna

310-595-6462

From: donnadavis609@...Date: Tue, 26 May 2009 14:40:28 -0400Subject: RE: [ ] Re: Early revision surgeries

i hav emy old papers and in 81 no where does it read as to future expecatons but a full revoery and that was yrs late in late 71 and they stopped fusing past l4 in 84 so i think they knew. I just spoke to my original surgeons offfice today for a referrla for flatback surgery and she said yea we gets lots of call from his old patienets WOW thats speaks volumes

Donna

310-595-6462

From: dyanndiamond Date: Tue, 26 May 2009 09:00:57 -0700Subject: Re: [ ] Re: Early revision surgeries

I hear so much anger in this post. As I was looking back at my old records from 1978, I found a note predicting my current state. "Progression is quite likely and degenerative change later in life with a lateral spondylolisthesis".... They knew the outcome wasn't a permanent solution, but who remembers what we are told as teenagers? I know most hip replacement surgeries done a few years ago were only anticipated to last 8 to 10 years.

I feel blessed for every day my h-rod held out, 30 years before I started having trouble.

They did the best they could with the technology available.

I remember watching TV news one night in the mid 80's when they showed the new "surgeries". I freaked out watching the surgeries, but when they got to the results... I was so jealous. They got to walk hours after surgery. No nine month CAST!

I know without the surgery, I would have been a crumpled, deformed mess. No husband, no beautiful children and maybe even dead of a punctured lung or heart. If anything, the original experience made me a stronger individual.

Please don't read this the wrong way, I want people to see the hope and possibilities.

Anger is such a destructive influence to your well being. Although this is probably the best forum to get these felling out with other people who "get it"

-Dyann

From: Bonnie <bonnie@.... com>Subject: [ ] Re: Hey Clinic Date: Sunday, May 24, 2009, 5:30 PM

HI Donna,

Revision surgery for Flatback has been around longer than 6 years. I had my revision surgery on Dec 2, 1997,

11 1/2 years ago.

Bonnie

[Guest guest]

Jeanne, Debbie and All,

I honestly think we have all wrestled with this ugly fact: What did they know,

and when did they know it. It seems clear that by the mid 80's there was

sufficient information and technology to conclude that there were specific

constellations of problems cropping up in those with long HR's and for the most

part that population would, at the time, have been too young to attribute the

problems to aging itself.

Even now it seems that even with the Luque rods problems can arise...so for me

the take away message is that if they fuse enough segments a patient may be

likely to develop problems in other discs and joints that will be taking the

extra impacts that a resilient spine normally would. I would say that my anger

is mostly directed to this fact and it underlies the main problem that a lot of

us face today...at least here in the USA: We go to orthopedic surgeons for

surgery, but being surgeons....they want to release you from care ASAP...but can

you really expect a GP to have the ability to handle accelerated joint/discs,

entraped nerves, scar tissue, and chronic pain to name the more common problems

that many of us deal with. I feel like we as a group were kind of " kicked to the

curb " and possibly not spoken about because that might have frightened patients

away from primary surgery. The recountings of many members who have had a the

run in with a doctor who says " your fusion looks fine " and lets a post HR

patient walk out of there with some idea that its " all in their head " is, in my

humble opinion, malpractice.

And if nothing else it really ticks me off that the condition still doesn't have

a readily identifiable name and even most of the ortho web sites do not have a

specific classification citing the constellation of troubles that typically

befall us early HR types. That really needs to change. They owe it to us

patients.

Take Care, Cam

[Guest guest]

Cam,

Thank you for your eloquent response. It is stunning that so many of you have had to deal with such torture and pain and still not have the disorder officially recognized. It is outrageous that so many are suffering and worse, dying, due to this disease and the sometimes inept treatment of supposed expert physicians. I am always so happy to read about you and others that have had successful surgeries, but it is equally terrifying to read about those who are not doing so well. It is so disheartening to meet with a doctor and leave feeling that you have been not given serious attention.. My two visits with a scoli surgeon left me more annoyed than anything. After waiting an hour to see him each time, I barely had 10 minutes to speak with him. I know he spent more time with the previous patient as he was in the next room for at least a half an hour. The first appointment he tells me I have early flatback, and when I tell him that I had read about the diagnosis he makes a sarcastic statement - "So now you know everything about flatback?" I told him politely that no, I didn't know everything and that I wanted to understand what his diagnosis meant. He said it was because my thoracic spine was flattened by my scoliosis surgery. He did not address my unfused lower lumbar, which he couldn't even see from the x-rays he took as they were too dark. He made no other examination of me at all. He then ordered the ct myelogram which ultimately showed that I have a very large synovial cyst (or other lesion) pressing into my spinal canal at L4-L5. I did not have the written report so I did not know this when I saw him after the test. He did not give me the written report until the end of our appointment as I was leaving. During our second (last) appointment he said it was a cyst (he called it a ganglion cyst but the report calls it a synovial cyst and I believe the two are different.) He acted as if this was a good thing and that a pain specialist he referred me to could drain it, but if that didn't work he could surgically remove it along with the bottom hook of my rod. I asked him why he wanted to remove the hook and he said he didn't have to if I didn't want to. He seemed to think it might be part of what is bothering me. I asked him how the rest of the rod would stay in place if he removed the hook and he said the rest was all encased in bone. I did not ask, but I wondered just how he could make such a statement. Now I find out that the pain specialist doesn't handle these cysts and have been told by an interventional radiologist that I should see a neurosurgeon. I've been calling all over the place and have finally contacted Northwestern Hospital here in Chicago where I live, both their neuro-radiology department and a neurosurgeon, Dr. Fessler, who works or worked with Dr. Ondra. I have had a call back from the neuro-radiology department and will talk with them tomorrow and see what they say. The other thing that I want to find out from a scoli-revision specialist is whether my lower lumbar spine is deteriorating rapidly for my age. The ct myelogram showed that I have mild bulging discs at L3-L4 and L4-L5 and some arthritis, but does not mention it as anything more than mild/moderate. My lumbar lordosis is good and the spacing between the vertebrae is good. My goal is to keep it that way for as long as I can and I'd like someone who understands our condition to tell me what I should do to slow down the deterioration - if that's even possible. I'm going to PT right now and have been told I have excellent flexibility and strength and they are working on my back muscles to loosen them up and teaching me ways to strengthen my core and increase my flexibility even more. What would you suggest I do to improve my chances of not needing a revision?

Thank you for moderating this board and for all your tremendous information and support. You are doing God's work by helping all of us find our way through this maze of confusion and pain.

Jeanne

[ ] Re: Early revision surgeries

Jeanne, Debbie and All,I honestly think we have all wrestled with this ugly fact: What did they know, and when did they know it. It seems clear that by the mid 80's there was sufficient information and technology to conclude that there were specific constellations of problems cropping up in those with long HR's and for the most part that population would, at the time, have been too young to attribute the problems to aging itself.Even now it seems that even with the Luque rods problems can arise...so for me the take away message is that if they fuse enough segments a patient may be likely to develop problems in other discs and joints that will be taking the extra impacts that a resilient spine normally would. I would say that my anger is mostly directed to this fact and it underlies the main problem that a lot of us face today...at least here in the USA: We go to orthopedic surgeons for surgery, but being surgeons....they want to release you from care ASAP...but can you really expect a GP to have the ability to handle accelerated joint/discs, entraped nerves, scar tissue, and chronic pain to name the more common problems that many of us deal with. I feel like we as a group were kind of "kicked to the curb" and possibly not spoken about because that might have frightened patients away from primary surgery. The recountings of many members who have had a the run in with a doctor who says "your fusion looks fine" and lets a post HR patient walk out of there with some idea that its "all in their head" is, in my humble opinion, malpractice.And if nothing else it really ticks me off that the condition still doesn't have a readily identifiable name and even most of the ortho web sites do not have a specific classification citing the constellation of troubles that typically befall us early HR types. That really needs to change. They owe it to us patients.Take Care, Cam

[Guest guest]

Jeanne,

Yeah, stunning is a good word for it. I just can not understand why there seems

to be this resistance to the notion of calling what comes after scoliosis fusion

" flatback " or fixed sagital imbalance, or early onset something or other...I

don't really care what...but something that relates to what it is...a problem

(or problems) that develops in relationship to long fusions in many older scoli

patients.

I really think that many or most of the surgeons around today were around or

proteges of the early scoli pioneers and they really believe that they were

doing no harm when they undertook these HR surgeries. Now it appears they they

may have been, in at least some cases, and I think they might feel the tiniest

bit guilty about being a part of the " oh you are all cured..go live your life "

club. They were wrong, and many of us will have to go through a second (3rd, 4th

?) surgery to keep this monster at bay. What other explanation for it is there.

Minimizing it and pretending that disc degeneration is part of everyone's age

related problems in their 30's and 40's is just nuts.

Anyway....It sounds like you have opened a dialogue with the group in Chicago

that seems to know what they are about. They seem like they understand your

problems and you are going to be able to have a reasonable comfort that you are

not their " first patient " !

I will be interested to learn what you find about from the docs about slowing

the progression of your degenerating or bulging discs. I am not a medical person

and I really don't know with any specificity what can be done. DrRand always

says that gel inserts in my shoes or any shoe that has extra cushioning, are a

great idea for me. So I am " magellin' " often! I believe the other advice often

given is the same that applies to the rest of the population...you know, watch

your weight, good body mechanics (in our case I would say use excellent body

mechanics). I think if I was in your shoes I would really work on strengthening

my core and I would also do postural work.... Technique as an example.

Perhaps your PT can suggest other ways. Hydration is often mentioned as

important...so is enough rest. Calcium and Vitamin D seem like they are

something you should talk to your doctor about too. I would think twice before I

did any sport activity that had a higher than normal amount of concussive force

on the spine. I personally would think running would not be great....but

walking,swimming, bike riding, x-county skiing...might be fine. Its all probably

a bit of a lottery anyway as to who will progress rapidly and who will not.

Anyway...none of this should be taken as any form of medical advice....its just

my $02 based on what I have tried to do for myself.

Let us know what you hear from Dr Fessler.

Take Care, Cam

p.s. for the record, I am not doing gods work...I, and many others here, are

just doing work that the medical field is not....pointing patients toward

information and help. Sharing your story and what you learn over time will help

add to that growing body of information that we can all learn from. thanks for

that.

[Guest guest]

Hi Jeanne...

I bet it's really frustrating, but I don't think anyone intentionally hurt

anyone. I think the first problems with flatback were reported in 1983. It

took a lot more time to develop something that didn't cause it. While some

people with smaller curves would have been better off without the surgery, many

of the patients who had surgery in the 80's might have been long dead from heart

or lung issues.

Regards,

>

>

> From: Bonnie <bonnie@... com>

> Subject: [ ] Re: Hey Clinic

>

> Date: Sunday, May 24, 2009, 5:30 PM

>

>

> HI Donna,

>

> Revision surgery for Flatback has been around longer than

6 years. I had my revision surgery on Dec 2, 1997,

> 11 1/2 years ago.

>

> Bonnie

>

[Guest guest]

I am one of the ones that had flatback immediately after my harrington rod

surgery in 1973. I was fused to S1 in that surgery and spent 6 months in a cast

from my neck to my knees. I always thought that maybe I hadn't tried hard

enough to stand up straight after getting out of the cast since I had been

casted in with my legs bent at a 45 degree angle to my body. It hurt to try to

stand up straight. I now know that it wasn't my fault.

I was not in horrible pain until 20 years later. I used to only hurt if I tried

to walk very far while carrying stuff, standing in line, or staying up all night

to type papers in college. Standing in line was the worst and I got a

disability parking permit at the age of 19. Some older people would frown when

they would see me park, but others could take one look and say, " oh, you poor

thing, you have had back surgery and you are so young! "

When I started having sciatica symptoms, I got the " your x-rays look good, but

it is no wonder that you have pain with all that metal in there " and " you just

have to expect more pain as you get older. " Most of the women in my family have

lived well into their 90s, so I just couldn't see spending 50 years in horrible

pain.

I am very thankful that I got the urge to look up harrington rods on the

internet one day when my back was hurting and found the truth.

For many years, I was upset that I had had the original surgery. After all, I

looked pretty good and I had zero pain before having the surgery. I did not

look so good or feel so good afterwards. After revision surgery, a few of us

had lunch with our old surgeon and he did apologize and say that he had done the

best he could and that they hadn't known how badly it would turn out later. It

was much easier to forgive him after having a successful revision surgery (but I

really had blamed my mom for forcing me into it. I wish my parents were still

around to see how well I am doing now.)

>

> Dyann,

>

> Grateful for that old surgery, you bet, but I get the anger, I've felt it

myself, not only for my case but others coming after me. MANY of us didn't get

as many good years as you, I got 11, and there were many who were put into

Flatback as soon as they got up from H-rod surgery. Anger can change things,

improve things, motivate those who can help to move in helping us. It's all in

the expression.

>

[Guest guest]

might i ask who did ur revision job and is he west coast

thank u and so glad u r better

Donna

310-595-6462

From: bahadreama@...Date: Wed, 27 May 2009 04:52:07 +0000Subject: [ ] Re: Early revision surgeries

I am one of the ones that had flatback immediately after my harrington rod surgery in 1973. I was fused to S1 in that surgery and spent 6 months in a cast from my neck to my knees. I always thought that maybe I hadn't tried hard enough to stand up straight after getting out of the cast since I had been casted in with my legs bent at a 45 degree angle to my body. It hurt to try to stand up straight. I now know that it wasn't my fault.I was not in horrible pain until 20 years later. I used to only hurt if I tried to walk very far while carrying stuff, standing in line, or staying up all night to type papers in college. Standing in line was the worst and I got a disability parking permit at the age of 19. Some older people would frown when they would see me park, but others could take one look and say, "oh, you poor thing, you have had back surgery and you are so young!"When I started having sciatica symptoms, I got the "your x-rays look good, but it is no wonder that you have pain with all that metal in there" and "you just have to expect more pain as you get older." Most of the women in my family have lived well into their 90s, so I just couldn't see spending 50 years in horrible pain.I am very thankful that I got the urge to look up harrington rods on the internet one day when my back was hurting and found the truth.For many years, I was upset that I had had the original surgery. After all, I looked pretty good and I had zero pain before having the surgery. I did not look so good or feel so good afterwards. After revision surgery, a few of us had lunch with our old surgeon and he did apologize and say that he had done the best he could and that they hadn't known how badly it would turn out later. It was much easier to forgive him after having a successful revision surgery (but I really had blamed my mom for forcing me into it. I wish my parents were still around to see how well I am doing now.)>> Dyann,> > Grateful for that old surgery, you bet, but I get the anger, I've felt it myself, not only for my case but others coming after me. MANY of us didn't get as many good years as you, I got 11, and there were many who were put into Flatback as soon as they got up from H-rod surgery. Anger can change things, improve things, motivate those who can help to move in helping us. It's all in the expression.>

[Guest guest]

Yes, and because it has no readily identifiable name... there are still drs ignorant of the problems we have. "I have a lot of patients with the Harrington Rod who have no problems" was the response I got when I told the dr. I thought the problems with pain I was having stemmed from my Harrington rod and fusion. Frustrating.

Also agree with Jeanne that we were told we were healed, do whatever you want (for me it was, "just don't skydive"). When I mentioned to another dr. that I only wished I'd been told as a teenager to exercise to strengthen the pelvic girdle and to avoid jarring the spine (like the dance matting and aerobics I did all those years), I was told by the surgeon,"you can't tell a teenager to exercise," and "you've got to live". Maybe so, but at least I wouldn't feel quite as cheated out of these years...I would feel that I had traded off the gotta live for the pain I'm having now. Had I been told, "No, you're not healed, you're going to need to try not to put too much load on those vertebrae," then at least I would have been aware that I still had a debilitating disease that would probably need monitoring. When I originally had the surgery I was told I would be "followed" for the rest of my life. After around 6-8 years, though, I was told I was good to go for life. This would have been the mid to late 80s. WHY would they drop the monitoring if they were starting to see problems !?

So anyway, despite being glad for a number of good years, I'm still mad that we were "kicked to the curb" as Cam says. But at this point I will also say that I am determined to press on through the days, getting the most relief I can until drs consider me bad enough to have surgery...this is the other thing. I figured NO amount of pain was acceptable in a world of modern medicine...but evidently you first cover the pain with meds and do P.T., then try injections, then get surgery as the last resort. (A friend at the pool had the same experience with her hip and that's what her dr. explained to her). I am glad I get some relief from Aleve and exercise and the therapy pool, but I still worry about what the meds are doing to my kidneys, etc...I guess that is the trade off now...at least I am making that my choice.

Enough griping, I guess. I hear all your stories, and feel like my pain is mild in comparison. You all are so brave to face the day to day of "the scoliosis beast".

Take care,

Diane VDW

Michigan

Jeanne, Debbie and All,I honestly think we have all wrestled with this ugly fact: What did they know, and when did they know it. It seems clear that by the mid 80's there was sufficient information and technology to conclude that there were specific constellations of problems cropping up in those with long HR's and for the most part that population would, at the time, have been too young to attribute the problems to aging itself.Even now it seems that even with the Luque rods problems can arise...so for me the take away message is that if they fuse enough segments a patient may be likely to develop problems in other discs and joints that will be taking the extra impacts that a resilient spine normally would. I would say that my anger is mostly directed to this fact and it underlies the main problem that a lot of us face today...at least here in the USA: We go to orthopedic surgeons for surgery, but being surgeons....they want to release you from care ASAP...but can you really expect a GP to have the ability to handle accelerated joint/discs, entraped nerves, scar tissue, and chronic pain to name the more common problems that many of us deal with. I feel like we as a group were kind of "kicked to the curb" and possibly not spoken about because that might have frightened patients away from primary surgery. The recountings of many members who have had a the run in with a doctor who says "your fusion looks fine" and lets a post HR patient walk out of there with some idea that its "all in their head" is, in my humble opinion, malpractice.And if nothing else it really ticks me off that the condition still doesn't have a readily identifiable name and even most of the ortho web sites do not have a specific classification citing the constellation of troubles that typically befall us early HR types. That really needs to change. They owe it to us patients.Take Care, Cam

____________________________________________________________

Let the sun shine in! Click now for a beautiful new sunroom!

[Guest guest]

Diane VDW,

Your comment, "WHY would they drop the monitoring if they were starting to see problems !?" really makes a very good point. But I suppose they were hoping that what they were seeing was isolated to just a limited part of the scoliosis population. Still, as the years have gone on and they see this is impacting to many people, why isn't there more being done? Just makes me wonder.

Jeanne

Re: [ ] Re: Early revision surgeries

Yes, and because it has no readily identifiable name... there are still drs ignorant of the problems we have. "I have a lot of patients with the Harrington Rod who have no problems" was the response I got when I told the dr. I thought the problems with pain I was having stemmed from my Harrington rod and fusion. Frustrating.

Also agree with Jeanne that we were told we were healed, do whatever you want (for me it was, "just don't skydive"). When I mentioned to another dr. that I only wished I'd been told as a teenager to exercise to strengthen the pelvic girdle and to avoid jarring the spine (like the dance matting and aerobics I did all those years), I was told by the surgeon,"you can't tell a teenager to exercise," and "you've got to live". Maybe so, but at least I wouldn't feel quite as cheated out of these years...I would feel that I had traded off the gotta live for the pain I'm having now. Had I been told, "No, you're not healed, you're going to need to try not to put too much load on those vertebrae," then at least I would have been aware that I still had a debilitating disease that would probably need monitoring. When I originally had the surgery I was told I would be "followed" for the rest of my life. After around 6-8 years, though, I was told I was good to go for life. This would have been the mid to late 80s. WHY would they drop the monitoring if they were starting to see problems !?

So anyway, despite being glad for a number of good years, I'm still mad that we were "kicked to the curb" as Cam says. But at this point I will also say that I am determined to press on through the days, getting the most relief I can until drs consider me bad enough to have surgery...this is the other thing. I figured NO amount of pain was acceptable in a world of modern medicine...but evidently you first cover the pain with meds and do P.T., then try injections, then get surgery as the last resort. (A friend at the pool had the same experience with her hip and that's what her dr. explained to her). I am glad I get some relief from Aleve and exercise and the therapy pool, but I still worry about what the meds are doing to my kidneys, etc...I guess that is the trade off now...at least I am making that my choice.

Enough griping, I guess. I hear all your stories, and feel like my pain is mild in comparison. You all are so brave to face the day to day of "the scoliosis beast".

Take care,

Diane VDW

Michigan

Jeanne, Debbie and All,I honestly think we have all wrestled with this ugly fact: What did they know, and when did they know it. It seems clear that by the mid 80's there was sufficient information and technology to conclude that there were specific constellations of problems cropping up in those with long HR's and for the most part that population would, at the time, have been too young to attribute the problems to aging itself.Even now it seems that even with the Luque rods problems can arise...so for me the take away message is that if they fuse enough segments a patient may be likely to develop problems in other discs and joints that will be taking the extra impacts that a resilient spine normally would. I would say that my anger is mostly directed to this fact and it underlies the main problem that a lot of us face today...at least here in the USA: We go to orthopedic surgeons for surgery, but being surgeons....they want to release you from care ASAP...but can you really expect a GP to have the ability to handle accelerated joint/discs, entraped nerves, scar tissue, and chronic pain to name the more common problems that many of us deal with. I feel like we as a group were kind of "kicked to the curb" and possibly not spoken about because that might have frightened patients away from primary surgery. The recountings of many members who have had a the run in with a doctor who says "your fusion looks fine" and lets a post HR patient walk out of there with some idea that its "all in their head" is, in my humble opinion, malpractice.And if nothing else it really ticks me off that the condition still doesn't have a readily identifiable name and even most of the ortho web sites do not have a specific classification citing the constellation of troubles that typically befall us early HR types. That really needs to change. They owe it to us patients.Take Care, Cam____________________________________________________________ Let the sun shine in! Click now for a beautiful new sunroom!

[Guest guest]

says lawsuit class action to me so many are effected and their lives ruined in pain from something that was said would fix us, to knoe they stiill used hrods after they jnew is crimnila negligence

Donna

310-595-6462

From: slinkers5@...Date: Wed, 27 May 2009 13:17:29 -0500Subject: Re: [ ] Re: Early revision surgeries

Diane VDW,

Your comment, "WHY would they drop the monitoring if they were starting to see problems !?" really makes a very good point. But I suppose they were hoping that what they were seeing was isolated to just a limited part of the scoliosis population. Still, as the years have gone on and they see this is impacting to many people, why isn't there more being done? Just makes me wonder.

Jeanne

Re: [ ] Re: Early revision surgeries

Yes, and because it has no readily identifiable name... there are still drs ignorant of the problems we have. "I have a lot of patients with the Harrington Rod who have no problems" was the response I got when I told the dr. I thought the problems with pain I was having stemmed from my Harrington rod and fusion. Frustrating.

Also agree with Jeanne that we were told we were healed, do whatever you want (for me it was, "just don't skydive"). When I mentioned to another dr. that I only wished I'd been told as a teenager to exercise to strengthen the pelvic girdle and to avoid jarring the spine (like the dance matting and aerobics I did all those years), I was told by the surgeon,"you can't tell a teenager to exercise," and "you've got to live". Maybe so, but at least I wouldn't feel quite as cheated out of these years...I would feel that I had traded off the gotta live for the pain I'm having now. Had I been told, "No, you're not healed, you're going to need to try not to put too much load on those vertebrae," then at least I would have been aware that I still had a debilitating disease that would probably need monitoring. When I originally had the surgery I was told I would be "followed" for the rest of my life. After around 6-8 years, though, I was told I was good to go for life. This would have been the mid to late 80s. WHY would they drop the monitoring if they were starting to see problems !?

So anyway, despite being glad for a number of good years, I'm still mad that we were "kicked to the curb" as Cam says. But at this point I will also say that I am determined to press on through the days, getting the most relief I can until drs consider me bad enough to have surgery...this is the other thing. I figured NO amount of pain was acceptable in a world of modern medicine...but evidently you first cover the pain with meds and do P.T., then try injections, then get surgery as the last resort. (A friend at the pool had the same experience with her hip and that's what her dr. explained to her). I am glad I get some relief from Aleve and exercise and the therapy pool, but I still worry about what the meds are doing to my kidneys, etc...I guess that is the trade off now...at least I am making that my choice.

Enough griping, I guess. I hear all your stories, and feel like my pain is mild in comparison. You all are so brave to face the day to day of "the scoliosis beast".

Take care,

Diane VDW

Michigan

Jeanne, Debbie and All,I honestly think we have all wrestled with this ugly fact: What did they know, and when did they know it. It seems clear that by the mid 80's there was sufficient information and technology to conclude that there were specific constellations of problems cropping up in those with long HR's and for the most part that population would, at the time, have been too young to attribute the problems to aging itself.Even now it seems that even with the Luque rods problems can arise...so for me the take away message is that if they fuse enough segments a patient may be likely to develop problems in other discs and joints that will be taking the extra impacts that a resilient spine normally would. I would say that my anger is mostly directed to this fact and it underlies the main problem that a lot of us face today...at least here in the USA: We go to orthopedic surgeons for surgery, but being surgeons....they want to release you from care ASAP...but can you really expect a GP to have the ability to handle accelerated joint/discs, entraped nerves, scar tissue, and chronic pain to name the more common problems that many of us deal with. I feel like we as a group were kind of "kicked to the curb" and possibly not spoken about because that might have frightened patients away from primary surgery. The recountings of many members who have had a the run in with a doctor who says "your fusion looks fine" and lets a post HR patient walk out of there with some idea that its "all in their head" is, in my humble opinion, malpractice.And if nothing else it really ticks me off that the condition still doesn't have a readily identifiable name and even most of the ortho web sites do not have a specific classification citing the constellation of troubles that typically befall us early HR types. That really needs to change. They owe it to us patients.Take Care, Cam____________________________________________________________ Let the sun shine in! Click now for a beautiful new sunroom!

[Guest guest]

I agree, it is something that should be classified as a class-action lawsuit, but would probably never go any where. Why do I say this? Well, not only was I a Harrington/Luque patient with a severe deformity that resulted over a short time period, but I had surgery that should have technically never been done to me in the first place, as well as with my second surgery (revision) with something called Cotrel-Dubouset instrumentation (developed by my surgeon) with pedicle screws that was never done correctly. Not only did I deal with that, but the pedicle screws that were inserted were not approved by the FDA and they continued to use them as well. I, along with several thousands of others across the country were in this class-action lawsuit, but never got anywhere either. These screws paralyzed, even caused death in some instances, etc, but there were only a handful that could be used in the case and by the time it was all said and done, since it was dragged out for over 5 yrs, there wasn't much left for those people after paying the lawyers. We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

[Guest guest]

I had my revision surgery with Dr Bridwell in St Louis two years ago. I am very

pleased with the outcome.

> >

> > Dyann,

> >

> > Grateful for that old surgery, you bet, but I get the anger, I've felt it

myself, not only for my case but others coming after me. MANY of us didn't get

as many good years as you, I got 11, and there were many who were put into

Flatback as soon as they got up from H-rod surgery. Anger can change things,

improve things, motivate those who can help to move in helping us. It's all in

the expression.

> >

>

[Guest guest]

Hi Everyone,

I have a somewhat different viewpoint on early surgeries, probably because of my age. I was first diagnosed at age 13, in 1954. My parents took me to a specialist who said he could operate and fuse my spine. I would be in a full body cast and in bed, for a year. There was a 20% chance that I would die on the operating table. The Harrington Rod was not yet invented, so there would be no instrumentation. Just surgery to fuse the spine in the curves it was in, in the hope it wouldn't get worse. My parents heard the 20% chance of dying on the table, and decided to do nothing. The subject was never raised again. In my 20s and early 30s, I must have seen at least 10 orthopedists, always complaining of pain and telling them that my curvature was getting worse and worse. I was told that I was being ridiculous, didn't I know that once I stopped growing, there was no way for the curve to get worse? (They really believed that then.) I was also told that nothing could be done for the pain because scoliosis doesn't cause pain. One orthopedist sent me home with a prescription for Valium, because, he said, all my troubles were in my head. Not one orthopedist told me there was a subspecialty for scoliosis. And, of course, there was no internet for me to search for information.

It wasn't until my son was diagnosed by our pediatrician at age 11 in 1977 that I got help for myself. The pediatrician knew exactly which specialists to send us to for my son: Drs Keim, Levine and Hoppenfeld, the three big shots in NYC. (I had never thought to ask a pediatrician for help for myself.). We first went to Dr. Keim and after he checked out my son, I asked him if he could do anything for me. 7 weeks later, Dr. Keim performed my Harrington Rod surgery. My curve before surgery was 70/55 and I was fused from T-4 to L-4. (I didn't like Dr. Hoppenfeld and never bothered to see Dr. Levine.) I was thrilled, 9 months in a 23 lb. plaster body cast and all, because at age 36, I had finally found help. I will be forever grateful to Dr. Keim and the Harrington Rod. The surgery I had in Nov. 1997 was far superior to what had been offered to me 21 years earlier when I was 13 and it gave me almost 20 very good, almost pain free years. Not for one moment do I think Dr. Keim operated on me (or my son 5 years later) for the money, and I know he cared very much, in spite of his sometimes gruff attitude. He thought he was performing a valuable service and I wholeheartedly agree. I was grateful there had been so many advances between 1954 and 1977.

In roughly 1991, I started having pain regularly. Not too bad, but enough to want to find out what was going on. Dr. Keim had already retired. I went to see Dr. Levine who was still practicing. He treated me as though my back pain had nothing to do with my earlier surgery. He ordered a brace for me with metal stays and it hurt my back something awful, even though Dr. Levine took part in fitting it. When I told Dr. Levine that the brace was making me feel worse, he told me that was impossible. I never saw him again. By then, around 1991, Dr. Levine should have known about the problems with the Harrington Rod and long fusions, but he never mentioned any of that to me. Why, I'll never know for sure. Over the next five or so years, I just used home remedies to feel better. Suddenly, in about 1996, my back pain increased so that I was bed bound and in extreme pain. A local scoliosis specialist in Stamford, Ct where I then lived, was written up in the local paper and I started seeing him. He tried meds, PT, and injections, never giving me a clear answer about what was wrong. I was miserable, to put it mildly. One day, about to leave his office, I noticed the word Flatback written on the insurance form in the diagnosis column. I screamed to anyone who could hear, "what's Flatback?" and a nurse proceeded to tell me.

By this time, Dr. Levine had retired and a very good friend of mine worked at Hospital For Special Surgery, NYC. I called her, she put me in touch with the head of the Quality Control Department there, and that's how I found Dr. Boachie. He performed my revision surgery, including fusion to the sacrum, removal of the entire Harrington Rod, osteotomies, new hardware including 4 rods, 12 screws and 8 cages, on 12/ 1997. No one could ever believe that he works for the money or that he doesn't care. I will never forget the look on his face when he saw me walk for the first time. I will never forget his kindness and caring manner, either. I do not have a perfect result, but I have a result that gave me my life back and I will be forever grateful. Personally, I don't know how anyone having such extensive work in a revision surgery can actually expect to be perfectly pain free 24/7 forever more. We still have some curves, our muscles and tendons and ligaments are still not quite where they belong, some are overworked because of the fusion, etrc.

I think it is very important that there be a name for our condition that everyone uses. If I never saw the word "Flatback" on that medical form, who knows where or how I would be now. Should Dr. Keim have used a Harrington Rod on my son in 1981? I think he probably knew there were problems with the Harrington Rod then, but there was nothing yet available that he thought would be better. I also think it might have been very, very hard for the docs of the 70s and early 80s who thought the Harrington Rod to be "the fix" for so many years, to accept that they may have actually harmed the patients they were trying to help.

As for pedicle screws, I know there are problems with them, and they were not approved by the FDA, but, at least when I had my surgery in 1997, there was nothing else that could be used instead. I had my surgery knowing this. It was either have the surgery with them or not have the surgery. I knowingly accepted the risk.

Also, I think that as years go by, if our revision surgeries turn out to have problems we don't recognize now, that they will continue to try to find a better way. Thank heavens for all of us, that they kept on looking for better fixes all along. Where would all be if the powers that be gave up trying in the 1950s. Yes, we are guines pigs. But that's because they keep on trying to find better ways to help us. I can't fault them for that!

Enough. I need to go pack for the Retreat!

Bonnie