Re: If i am reading correctly...

March 2, 2006

Dear Jolynn,

Good questions, I'll take a stab at them.

I feel I got a huge improvement in my overall well being from the surgery.

!st, no more pain, really HUGE. 2nd, I'm balanced, hips and shoulders, I've

never been that way. Lost weight because I can now walk, before surgery on a

good day I could go about half a block before the pain was bad and I had to

sit down to resolve it. This surgery gave me back the ability to live a full

life.

Would I have done it earlier, you bet! Finding a doc who had a clue what was

wrong was a HUGE battle, I knew something was wrong since I was 24, took

fifteen years, and twenty some doc's to get a diagnosis. I feel these were

years lost to me and my family, hard to have a Mom and Wife who can't walk,

or stand in line, or is in so much pain she's a @#$%^ a lot of the time.

This is the part of the whole thing that angers me, anyone who has had

Harrington Rods installed in them should be told of Flatback by the

manufacturer, so they can get themselves checked by a reputable doc with

experience. They have known since the eighties that this complication is

possible, and alas, we have had to go it alone finding doc's that have a

clue whats going on. Lost years I'll never get back.

I used a cane, helped keep some of the pressure off that right hip that

caused me a ton of pain. Decompression surgery got rid of my hip and leg

pain.

Keeping yourself fit, and keeping your weight down sure helps, but in my

case I couldn't walk far, and exercise was impossible. Surgery was the only

thing that would help me, I was too far gone.

I wanted the surgery yesterday, fix me please was my motto.

I have zero regrets about having surgery. I do have some deficits, not being

able to bend, most of my back is numb, and my left thigh, and I can't pick

my feet up more than an inch in a seated position, so I have to use my hand

to help them a long. MINOR, in the scope of things, I'm so thankful to walk,

do two miles a day, can stand on line as long as necessary, I have no pain,

and look better than I have in years, you can see it on my face my friends

tell me. The surgeries I have had to relieve Flatback have been a huge

blessing to me, along with my surgeons, Dr. Anant Kumar and Dr.

O'Brien. I got my life back, in plain terms!

Colorado Springs

[ ] If i am reading correctly...

> From what I have been able to read about flatback revision the

> earlier you have the corrective surgery the better. I am just making

> sure I am reading this correctly. Please feel free to let me know if

> I am missing something.

> I am pretty sure that I would be a candidate (only determined by a

> qualified surgeon so we will see). I don't want to wait until there

> is any more damage. It stinks to think of back surgery, but even the

> worst recovery beats having this issue everyday even if it wasn't

> going to get worse. And if I can get this done now my recovery

> would most likely be faster.

>

> SO I have a question (well more like 5 or 6). I am well aware that

> my back will never be %100, neither will most of the other parts of

> my body and I have fully accepted that. What percentage would you

> give your improvement(please include quality of life in your

> answer)? Also is there anything I can do to alow myself more

> mobility in the mean time? I walk every day on my treadmil and am

> doing really well with that. Would using a cane or some other form

> of support help at all? I cannot do ANY weight baring excersice and

> have to be very careful with physical activity.

>

> I am pretty much coming to the rapid conclusion that this issue is

> just going keep sucking the life out of me if I let it go. Is there

> anyone who wishes they would have had the surgery sooner? Is there

> anyone who wishes they would have waited?

> My 9 year old daughter who also has a gazillion issues is having

> chest surgery on April 3rd. Jumping into surgery just seems a bit

> scary with our family already going through so much at the moment,

> but I feel like if I go through it now the less time I waste being

> in this horrible pain. I know it is not a garauntee and that the

> surgery could possibly leave me worse off. I will be asking the DR

> all of this but you can't beat the response from personal

> experiences.

>

> The older I get the worse my other medical issues will probably get

> and this most likely will not be an option for me in my 40's so it

> is important I figure out soonish (next year or so) that I either

> want to do this or not.

>

> Thanks in advance for taking the time to read such a lengthy post,

> Jolynn

>

> scoliosis veterans * flatback sufferers * revision candidates

>

March 2, 2006

> This is the part of the whole thing that angers me, anyone who has

had

> Harrington Rods installed in them should be told of Flatback by

the

> manufacturer, so they can get themselves checked by a reputable

doc with

> experience. They have known since the eighties that this

complication is

> possible, and alas, we have had to go it alone finding doc's that

have a

> clue whats going on.

>

It does make me frusterated the there seems to be no effort to make

people more aware. Nothing like a little self diagnosis to make you

feel a bit wary of the information or lack of it.

Knowing that my daughter will be having scoliosis surgery at one

point or another I feel soooooo much better that they no longer do

the surgery the way it was done.

March 2, 2006

If the manufacturer is still in business, they do not have a database

of patients. Even if they wanted to, I don't believe they could

because of HIPA regulations.

--

> This is the part of the whole thing that angers me, anyone who has had

> Harrington Rods installed in them should be told of Flatback by the

> manufacturer, so they can get themselves checked by a reputable doc

with

> experience. They have known since the eighties that this

complication is

> possible, and alas, we have had to go it alone finding doc's that

have a

> clue whats going on. Lost years I'll never get back.

March 3, 2006

Dear ,

Just like in everything that goes on today, no one wants to take

responsibility, at the very least the manufacturer could send out a alert

memo to primary care doc's. I was very surprised when we moved to Colorado

Springs that my new primary care doc was hip to Flatback, was very well read

about it, and was amazed I was doing as well as I was. I guess the only way

notification would happen was if the manufacturer was sued, I know they had

to have made a ton of money off those rods. I have left the whole thing in

the past, but it does anger me that we have to bee bop around to doc's, many

of us for years, before we find out what the hell is wrong with us. What did

the post polio people do to get the word out, or is our struggle just that

much harder because our syndrome is caused by the rod and the technique they

used. Common sence just doesn't seem to play a part in this, that's why I

stay with the group, still learning, and Hopefully I can help someone who

was just diagnosised or are trying to find out why they hurt all these years

later. It makes me want to cry that there are so many people out there that

have zero clue whats wrong, I've been talking to a lady from church about

it, she has rods installed in early eighties, and is a mess but trying to

deal with it with a chiropractor. She is so affraid of more surgery. I gave

her a ton of info, and when she's ready, I told her I would go with her to

see Dr. Kumar. Maybe it will just take some of us who have gone through it

to talk about it and get the word out to others to get themselves checked,

especially if they are have a ton of pain and disability. I'm done venting,

but this issue of notification and awareness still bugs me!

Colorado Springs

[ ] Re: If i am reading correctly...

> If the manufacturer is still in business, they do not have a database

> of patients. Even if they wanted to, I don't believe they could

> because of HIPA regulations.

>

> --

>

>> This is the part of the whole thing that angers me, anyone who has had

>> Harrington Rods installed in them should be told of Flatback by the

>> manufacturer, so they can get themselves checked by a reputable doc

> with

>> experience. They have known since the eighties that this

> complication is

>> possible, and alas, we have had to go it alone finding doc's that

> have a

>> clue whats going on. Lost years I'll never get back.

>

> scoliosis veterans * flatback sufferers * revision candidates

>

March 3, 2006

Hi ! I had my original surgery at Boston Children's in 1976. I did not realize that you had your surgery as far back as 1972. I have not even been contacted about a longterm study.

In a message dated 3/3/06 2:12:51 PM, heatherbenjaminnicholas@... writes:

---....your post was terrifc concerning the Harrinton Rods, I

never heard of flatback until this past June 2005!!! Here I am post

revision surgery....just almost six weeks!! I nearly fell on the

floor when I was told this news...I had my rods put in in 1972!! How

could this be I just learned about this in June....Boston Children;s

Hospital had no problem reaching me to participate in long term

studies concerning scoliosis...I could have been easliy alerted to

possible issues with the "rods"..It may have had some impact on how I

proceeded with things, like over doing the nordic track and thinking

the more I did the better I would feel..no, I think it made the

situation worse. I agree, it is water under the damn now.however the

knowledge would have been helpful!!,PA

March 3, 2006

---....your post was terrifc concerning the Harrinton Rods, I

never heard of flatback until this past June 2005!!! Here I am post

revision surgery....just almost six weeks!! I nearly fell on the

floor when I was told this news...I had my rods put in in 1972!! How

could this be I just learned about this in June....Boston Children;s

Hospital had no problem reaching me to participate in long term

studies concerning scoliosis...I could have been easliy alerted to

possible issues with the " rods " ..It may have had some impact on how I

proceeded with things, like over doing the nordic track and thinking

the more I did the better I would feel..no, I think it made the

situation worse. I agree, it is water under the damn now.however the

knowledge would have been helpful!!,PA

In , " Kirkaldie "

<.Kirkaldie@...> wrote:

>

> Dear ,

>

> Just like in everything that goes on today, no one wants to take

> responsibility, at the very least the manufacturer could send out a

alert

> memo to primary care doc's. I was very surprised when we moved to

Colorado

> Springs that my new primary care doc was hip to Flatback, was very

well read

> about it, and was amazed I was doing as well as I was. I guess the

only way

> notification would happen was if the manufacturer was sued, I know

they had

> to have made a ton of money off those rods. I have left the whole

thing in

> the past, but it does anger me that we have to bee bop around to

doc's, many

> of us for years, before we find out what the hell is wrong with us.

What did

> the post polio people do to get the word out, or is our struggle

just that

> much harder because our syndrome is caused by the rod and the

technique they

> used. Common sence just doesn't seem to play a part in this, that's

why I

> stay with the group, still learning, and Hopefully I can help

someone who

> was just diagnosised or are trying to find out why they hurt all

these years

> later. It makes me want to cry that there are so many people out

there that

> have zero clue whats wrong, I've been talking to a lady from church

about

> it, she has rods installed in early eighties, and is a mess but

trying to

> deal with it with a chiropractor. She is so affraid of more

surgery. I gave

> her a ton of info, and when she's ready, I told her I would go with

her to

> see Dr. Kumar. Maybe it will just take some of us who have gone

through it

> to talk about it and get the word out to others to get themselves

checked,

> especially if they are have a ton of pain and disability. I'm done

venting,

> but this issue of notification and awareness still bugs me!

>

> Colorado Springs

> [ ] Re: If i am reading correctly...

>

> > If the manufacturer is still in business, they do not have a

database

> > of patients. Even if they wanted to, I don't believe they could

> > because of HIPA regulations.

> >

> > --

> >

> >> This is the part of the whole thing that angers me, anyone who

has had

> >> Harrington Rods installed in them should be told of Flatback by

the

> >> manufacturer, so they can get themselves checked by a reputable

doc

> > with

> >> experience. They have known since the eighties that this

> > complication is

> >> possible, and alas, we have had to go it alone finding doc's that

> > have a

> >> clue whats going on. Lost years I'll never get back.

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

March 3, 2006

I have never been involved in a law suit (nore do I think I really

want to) But I would think if people can sue cigarette manufactures

and Mcdonalds for being oveweight and having lung cancer then people

in our situation would in fact have some sort of grounds for

somesort of something.

I would be happy if they just made an effort to reach people via a

news announcement or something to that nature. I think it would open

a can of worms with the whole " who knew what when " issues. I know

that I would have been dead by 13 had I not had the surgery. From

what I am told there were no other options at the time.

Jolynn

> >

> >> This is the part of the whole thing that angers me, anyone who

has had

> >> Harrington Rods installed in them should be told of Flatback by

the

> >> manufacturer, so they can get themselves checked by a reputable

doc

> > with

> >> experience. They have known since the eighties that this

> > complication is

> >> possible, and alas, we have had to go it alone finding doc's

that

> > have a

> >> clue whats going on. Lost years I'll never get back.

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

March 3, 2006

,love your story,gives me hope going into my surgery next month.How you described your pain before your surgery sounds like how I feel right now.I just hope I didn't wait to long going from dr. to dr..Loved the results of your story and I hope I have the same results.Thanks it was encouraging.Vonnie Kirkaldie <.Kirkaldie@...> wrote: Dear Jolynn,Good questions, I'll take a stab at them.I feel I got a huge improvement in my overall well being from the surgery. !st, no more pain, really HUGE. 2nd, I'm balanced, hips and shoulders, I've never been that way. Lost weight because I can now walk, before surgery on a good day I could go about half a block before the pain was bad and I had to sit down to resolve it. This surgery gave me back the ability to live a full life.Would I have done it

earlier, you bet! Finding a doc who had a clue what was wrong was a HUGE battle, I knew something was wrong since I was 24, took fifteen years, and twenty some doc's to get a diagnosis. I feel these were years lost to me and my family, hard to have a Mom and Wife who can't walk, or stand in line, or is in so much pain she's a @#$%^ a lot of the time. This is the part of the whole thing that angers me, anyone who has had Harrington Rods installed in them should be told of Flatback by the manufacturer, so they can get themselves checked by a reputable doc with experience. They have known since the eighties that this complication is possible, and alas, we have had to go it alone finding doc's that have a clue whats going on. Lost years I'll never get back.I used a cane, helped keep some of the pressure off that right hip that caused me a ton of pain. Decompression surgery got rid of my hip and leg pain.Keeping yourself

fit, and keeping your weight down sure helps, but in my case I couldn't walk far, and exercise was impossible. Surgery was the only thing that would help me, I was too far gone.I wanted the surgery yesterday, fix me please was my motto.I have zero regrets about having surgery. I do have some deficits, not being able to bend, most of my back is numb, and my left thigh, and I can't pick my feet up more than an inch in a seated position, so I have to use my hand to help them a long. MINOR, in the scope of things, I'm so thankful to walk, do two miles a day, can stand on line as long as necessary, I have no pain, and look better than I have in years, you can see it on my face my friends tell me. The surgeries I have had to relieve Flatback have been a huge blessing to me, along with my surgeons, Dr. Anant Kumar and Dr. O'Brien. I got my life back, in plain terms!Colorado Springs [ ] If i am reading correctly...> From what I have been able to read about flatback revision the> earlier you have the corrective surgery the better. I am just making> sure I am reading this correctly. Please feel free to let me know if> I am missing something.> I am pretty sure that I would be a candidate (only determined by a> qualified surgeon so we will see). I don't want to wait until there> is any more damage. It stinks to think of back surgery, but even the> worst recovery beats having this issue everyday even if it wasn't> going to get worse. And if I can get this done now my recovery> would most likely be faster.>> SO I have a question (well more like 5 or 6). I am well aware that> my back

will never be %100, neither will most of the other parts of> my body and I have fully accepted that. What percentage would you> give your improvement(please include quality of life in your> answer)? Also is there anything I can do to alow myself more> mobility in the mean time? I walk every day on my treadmil and am> doing really well with that. Would using a cane or some other form> of support help at all? I cannot do ANY weight baring excersice and> have to be very careful with physical activity.>> I am pretty much coming to the rapid conclusion that this issue is> just going keep sucking the life out of me if I let it go. Is there> anyone who wishes they would have had the surgery sooner? Is there> anyone who wishes they would have waited?> My 9 year old daughter who also has a gazillion issues is having> chest surgery on April 3rd. Jumping into surgery just seems a bit> scary

with our family already going through so much at the moment,> but I feel like if I go through it now the less time I waste being> in this horrible pain. I know it is not a garauntee and that the> surgery could possibly leave me worse off. I will be asking the DR> all of this but you can't beat the response from personal> experiences.>> The older I get the worse my other medical issues will probably get> and this most likely will not be an option for me in my 40's so it> is important I figure out soonish (next year or so) that I either> want to do this or not.>>> Thanks in advance for taking the time to read such a lengthy post,> Jolynn>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

March 3, 2006

I wonder if this is something Oprah would consider helping to get the word out..... perhaps someone like Racine or one of the top doctors could go on her show!!?? Ken. Kirkaldie <.Kirkaldie@...> wrote: Dear ,Just like in everything that goes on today, no one wants to take responsibility, at the very least the manufacturer could send out a alert memo to

primary care doc's. I was very surprised when we moved to Colorado Springs that my new primary care doc was hip to Flatback, was very well read about it, and was amazed I was doing as well as I was. I guess the only way notification would happen was if the manufacturer was sued, I know they had to have made a ton of money off those rods. I have left the whole thing in the past, but it does anger me that we have to bee bop around to doc's, many of us for years, before we find out what the hell is wrong with us. What did the post polio people do to get the word out, or is our struggle just that much harder because our syndrome is caused by the rod and the technique they used. Common sence just doesn't seem to play a part in this, that's why I stay with the group, still learning, and Hopefully I can help someone who was just diagnosised or are trying to find out why they hurt all these years later. It makes me want to cry that there are

so many people out there that have zero clue whats wrong, I've been talking to a lady from church about it, she has rods installed in early eighties, and is a mess but trying to deal with it with a chiropractor. She is so affraid of more surgery. I gave her a ton of info, and when she's ready, I told her I would go with her to see Dr. Kumar. Maybe it will just take some of us who have gone through it to talk about it and get the word out to others to get themselves checked, especially if they are have a ton of pain and disability. I'm done venting, but this issue of notification and awareness still bugs me!Colorado Springs [ ] Re: If i am reading correctly...> If the manufacturer is still in business, they do not

have a database> of patients. Even if they wanted to, I don't believe they could> because of HIPA regulations.>> -->> >>> This is the part of the whole thing that angers me, anyone who has had>> Harrington Rods installed in them should be told of Flatback by the>> manufacturer, so they can get themselves checked by a reputable doc> with>> experience. They have known since the eighties that this> complication is>> possible, and alas, we have had to go it alone finding doc's that> have a>> clue whats going on. Lost years I'll never get back.>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

Links>>>>>>>>>

Use Photomail to share photos without annoying attachments.

March 3, 2006

Dear Jolynn,

What's going on with your daughter that she'll need scoliosis surgery? I'm

sure I missed a post where you explained it. I too have a daughter

undergoing scoliosis treatment, currently braced for a 28 degree " C " type

curve. Sucks that it goes on and on! Harder when it's your kid hunh!

[ ] Re: If i am reading correctly...

>

>> This is the part of the whole thing that angers me, anyone who has

> had

>> Harrington Rods installed in them should be told of Flatback by

> the

>> manufacturer, so they can get themselves checked by a reputable

> doc with

>> experience. They have known since the eighties that this

> complication is

>> possible, and alas, we have had to go it alone finding doc's that

> have a

>> clue whats going on.

>>

> It does make me frusterated the there seems to be no effort to make

> people more aware. Nothing like a little self diagnosis to make you

> feel a bit wary of the information or lack of it.

> Knowing that my daughter will be having scoliosis surgery at one

> point or another I feel soooooo much better that they no longer do

> the surgery the way it was done.

>

> scoliosis veterans * flatback sufferers * revision candidates

>

March 3, 2006

Dear Vonnie,

Hope is exactly why I stay with the group since I'm three years post -op. There should be at least one bright cloud in a sea of dark clouds when you are diagnosised, while this surgery is tough, and there is no guarntees, there are good outcomes out there. I wish you tons of luck, this is a big moment in your life, but hopefully you'll come out of this with less pain and more function, exactly what I was looking for. Just look to our recent girls, struggles yes, but they are on the mend, it all takes time and healing. I'll be sending you tons of good thoughts while you prepare, lots to do Hunh! Take some time for yourself in all the madness of getting ready, take some time to relax, and most of all, see yourself well, very important. I knew my doc was going to fix me with all my heart, and I just SAW myself fixed in my mind. A positive attitude is super important, half the battle, the part of the battle you can do for yourself, the rest of it is in the hands of your surgeon. Now I realize I sound like some Hippy, but I'm a glass half full girl, glad that if I had to have Flatback there was a fix for it, and great doc's doing this difficult work. I will always be ever thankful to Dr. Kumar that he kept fighting the good fight to get me where I am now.

[ ] If i am reading correctly...> From what I have been able to read about flatback revision the> earlier you have the corrective surgery the better. I am just making> sure I am reading this correctly. Please feel free to let me know if> I am missing something.> I am pretty sure that I would be a candidate (only determined by a> qualified surgeon so we will see). I don't want to wait until there> is any more damage. It stinks to think of back surgery, but even the> worst recovery beats having this issue everyday even if it wasn't> going to get worse. And if I can get this done now my recovery> would most likely be faster.>> SO I have a question (well more like 5 or 6). I am well aware that> my back will never be %100, neither will most of the other parts of> my body and I have fully accepted that. What percentage would you> give your improvement(please include quality of life in your> answer)? Also is there anything I can do to alow myself more> mobility in the mean time? I walk every day on my treadmil and am> doing really well with that. Would using a cane or some other form> of support help at all? I cannot do ANY weight baring excersice and> have to be very careful with physical activity.>> I am pretty much coming to the rapid conclusion that this issue is> just going keep sucking the life out of me if I let it go. Is there> anyone who wishes they would have had the surgery sooner? Is there> anyone who wishes they would have waited?> My 9 year old daughter who also has a gazillion issues is having> chest surgery on April 3rd. Jumping into surgery just seems a bit> scary with our family already going through so much at the moment,> but I feel like if I go through it now the less time I waste being> in this horrible pain. I know it is not a garauntee and that the> surgery could possibly leave me worse off. I will be asking the DR> all of this but you can't beat the response from personal> experiences.>> The older I get the worse my other medical issues will probably get> and this most likely will not be an option for me in my 40's so it> is important I figure out soonish (next year or so) that I either> want to do this or not.>>> Thanks in advance for taking the time to read such a lengthy post,> Jolynn>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

March 3, 2006

Hi ,

When I had my daughter I insisted every 6 months she be checked for

scoliosis (she is a long tall carbon copy of me). At her 6 year

check up they found it.

We were referred to Boston Children's, but I researched my other

options. I found the Shriners hospital in Sprinfield and felt that

it was the best possible place for her to get care. They were not

shy in telling me " like mother like daughter " .

The good news is that her 3 curves actually straightened up for now.

This opened just enough of a window to try to correct her chest. By

her current age I had been in a brace for a year at least.

The orthopedist said this happens in Marfan patients becasue the

spine actually curves and spirals so it will change drasticly as she

grows. Some people who have Marfan syndrome all of their skeleton is

off center. Scoliosis in this case can go from no brace to needing

surgery pretty quickly given the rate of growth Marfans have (she is

9 and in a size 7 adult shoe).

Even if she gets through all of her growing the iferiority of her

connective tissue as an adult can cause her to have severe

scoliosis.

I must say she connered the Dr one visit and said " so am I for sure,

FOR SURE having back surgery? " And the dr had to admit that nothing

is final and there is always a small chance she might not need it.

Although we know it isn't " FOR SURE " we do know that it is the most

probable out come.

Yeah It is a 100000 times worse when you have to watch your kid go

through it. The bright side is neither one of us would have known we

had Marfan if she did not have scoliosis. If I look at it that way

we are getting the health care we need now that we know.

Jolynn

March 3, 2006

, I don't know how intentional that little slip was, but "water under the damn" is priceless!

Sharon

:^)

[ ] Re: If i am reading correctly...>> >> >> > If the manufacturer is still in business, they do not have a > database>> > of patients. Even if they wanted to, I don't believe they could>> > because of HIPA regulations.>> >>> > -->> >>> > >> >>> >> This is the part of the whole thing that angers me, anyone who > has had>> >> Harrington Rods installed in them should be told of Flatback by > the>> >> manufacturer, so they can get themselves checked by a reputable > doc>> > with>> >> experience. They have known since the eighties that this>> > complication is>> >> possible, and alas, we have had to go it alone finding doc's that>> > have a>> >> clue whats going on. Lost years I'll never get back.>> >>> >>> >>> >>> >>> >>> > scoliosis veterans * flatback sufferers * revision candidates>> >

March 3, 2006

Jolynn, your story is very interesting. I was a Children's kid from birth

to age 10, but ended up having my surgery at Shriners' (1971). It must be

really hard watching your daughter going through this while you yourself are

still in need of treatment.

Sharon

[ ] Re: If i am reading correctly...

> Hi ,

>

> When I had my daughter I insisted every 6 months she be checked for

> scoliosis (she is a long tall carbon copy of me). At her 6 year

> check up they found it.

>

> We were referred to Boston Children's, but I researched my other

> options. I found the Shriners hospital in Sprinfield and felt that

> it was the best possible place for her to get care. They were not

> shy in telling me " like mother like daughter " .

>

> The good news is that her 3 curves actually straightened up for now.

> This opened just enough of a window to try to correct her chest. By

> her current age I had been in a brace for a year at least.

>

> The orthopedist said this happens in Marfan patients becasue the

> spine actually curves and spirals so it will change drasticly as she

> grows. Some people who have Marfan syndrome all of their skeleton is

> off center. Scoliosis in this case can go from no brace to needing

> surgery pretty quickly given the rate of growth Marfans have (she is

> 9 and in a size 7 adult shoe).

>

> Even if she gets through all of her growing the iferiority of her

> connective tissue as an adult can cause her to have severe

> scoliosis.

>

> I must say she connered the Dr one visit and said " so am I for sure,

> FOR SURE having back surgery? " And the dr had to admit that nothing

> is final and there is always a small chance she might not need it.

> Although we know it isn't " FOR SURE " we do know that it is the most

> probable out come.

>

> Yeah It is a 100000 times worse when you have to watch your kid go

> through it. The bright side is neither one of us would have known we

> had Marfan if she did not have scoliosis. If I look at it that way

> we are getting the health care we need now that we know.

>

> Jolynn

>

> scoliosis veterans * flatback sufferers * revision candidates

>

March 4, 2006

---Hi!,

yes, I was contacted awhile back ago and asked to fill out papers and

get a bone density test done.They were looking at bone density in

scoliosis patients. I also know when I had my daughter back in 1991 I

was able to have them access my records to see if I was able to get

an epidural...getting my information was no problem, so it is not

like they did not have a record of scolisis patients.., Pa

In , kim1450@... wrote:

>

> Hi ! I had my original surgery at Boston Children's in

1976. I did

> not realize that you had your surgery as far back as 1972. I

have not even

> been contacted about a longterm study.

>

> In a message dated 3/3/06 2:12:51 PM, heatherbenjaminnicholas@...

> writes:

>

> > ---....your post was terrifc concerning the Harrinton Rods, I

> > never heard of flatback until this past June 2005!!! Here I am

post

> > revision surgery....just almost six weeks!! I nearly fell on the

> > floor when I was told this news...I had my rods put in in 1972!!

How

> > could this be I just learned about this in June....Boston

Children;s

> > Hospital had no problem reaching me to participate in long term

> > studies concerning scoliosis...I could have been easliy alerted to

> > possible issues with the " rods " ..It may have had some impact on

how I

> > proceeded with things, like over doing the nordic track and

thinking

> > the more I did the better I would feel..no, I think it made the

> > situation worse. I agree, it is water under the damn now.however

the

> > knowledge would have been helpful!!,PA

> >

>

March 4, 2006

I have an idea, just to get the word out. Why not appeal to the big docs out there they they appear on something like the Today show or appeal to the Today show. These docs are no strangers to speaking and there are always medical segments on tthe Today show. They don't have to be accusatory, they can just say somethig like, "Many (or "some" patients who had spinal fusion with Harrington Rod" blah, blah.

Personally, I don't blame anyone. Harrington Rod surgery was state of the art and it gave me 20 good years that I would not have had otherwise.

Bonnie

[ ] Re: If i am reading correctly...

I have never been involved in a law suit (nore do I think I really want to) But I would think if people can sue cigarette manufactures and Mcdonalds for being oveweight and having lung cancer then people in our situation would in fact have some sort of grounds for somesort of something. I would be happy if they just made an effort to reach people via a news announcement or something to that nature. I think it would open a can of worms with the whole "who knew what when" issues. I know that I would have been dead by 13 had I not had the surgery. From what I am told there were no other options at the time. Jolynn > >> >> This is the part of the whole thing that angers me, anyone who has had> >> Harrington Rods installed in them should be told of Flatback by the> >> manufacturer, so they can get themselves checked by a reputable doc> > with> >> experience. They have known since the eighties that this> > complication is> >> possible, and alas, we have had to go it alone finding doc's that> > have a> >> clue whats going on. Lost years I'll never get back.> >> >> >> >> >> >> > scoliosis veterans * flatback sufferers * revision candidates> >

March 4, 2006

---

Bonnie,

I am with you, without the surgery I might not be here..it was all

they knew back then. But when it came to be a concern, it should have

become a concern to all of us...not let us do this cat and mouse

thing..trying to find out what the hell was wrong with us. I am not

looking for any legal action just honesty and information. <PA

In , " Bonnie " <bonnie@...> wrote:

>

> I have an idea, just to get the word out. Why not appeal to the

big docs out there they they appear on something like the Today show

or appeal to the Today show. These docs are no strangers to

speaking and there are always medical segments on tthe Today show.

They don't have to be accusatory, they can just say somethig

like, " Many (or " some " patients who had spinal fusion with Harrington

Rod " blah, blah.

>

> Personally, I don't blame anyone. Harrington Rod surgery was state

of the art and it gave me 20 good years that I would not have had

otherwise.

>

> Bonnie

> [ ] Re: If i am reading correctly...

>

> I have never been involved in a law suit (nore do I think I

really

> want to) But I would think if people can sue cigarette

manufactures

> and Mcdonalds for being oveweight and having lung cancer then

people

> in our situation would in fact have some sort of grounds for

> somesort of something.

> I would be happy if they just made an effort to reach people via

a

> news announcement or something to that nature. I think it would

open

> a can of worms with the whole " who knew what when " issues. I know

> that I would have been dead by 13 had I not had the surgery. From

> what I am told there were no other options at the time.

>

> Jolynn

>

> > >

> > >> This is the part of the whole thing that angers me, anyone

who

> has had

> > >> Harrington Rods installed in them should be told of Flatback

by

> the

> > >> manufacturer, so they can get themselves checked by a

reputable

> doc

> > > with

> > >> experience. They have known since the eighties that this

> > > complication is

> > >> possible, and alas, we have had to go it alone finding doc's

> that

> > > have a

> > >> clue whats going on. Lost years I'll never get back.

> > >

> > > scoliosis veterans * flatback sufferers * revision candidates

> > >

March 4, 2006

PA.

I agree wholeheartedly.

Bonnie

[ ] Re: If i am reading correctly...> > > I have never been involved in a law suit (nore do I think I really > want to) But I would think if people can sue cigarette manufactures > and Mcdonalds for being oveweight and having lung cancer then people > in our situation would in fact have some sort of grounds for > somesort of something. > I would be happy if they just made an effort to reach people via a > news announcement or something to that nature. I think it would open > a can of worms with the whole "who knew what when" issues. I know > that I would have been dead by 13 had I not had the surgery. From > what I am told there were no other options at the time. > > Jolynn > > > > > >> > >> This is the part of the whole thing that angers me, anyone who > has had> > >> Harrington Rods installed in them should be told of Flatback by > the> > >> manufacturer, so they can get themselves checked by a reputable > doc> > > with> > >> experience. They have known since the eighties that this> > > complication is> > >> possible, and alas, we have had to go it alone finding doc's > that> > > have a> > >> clue whats going on. Lost years I'll never get back.> > >> > >> > >> > >> > >> > >> > > scoliosis veterans * flatback sufferers * revision candidates> > >

March 4, 2006

Oh, !

You have finally said what is on your mind! I am a very frustrated Harrington Rod person (1992) and understand exactly what you are saying. As you probably know from past posts, I really respect your posts, your opinions, and our situations! I am probably too old and too tired to change my own situation, but I will never stop advocating for others, AS YOU DO SO WELL!

I always watch for posts from you.

Love,

Carole M.

March 4, 2006

Hi...

I've tried to keep quiet on this issue, but just can't do it any

longer. :-) The problem is not with the manufacturer, and not with

the many doctors that have changed the lives of so many here. I

believe the problem is with the local spine surgeons who have had

information about problems with Harrington rods available to them

since the mid-1980's. Some of these doctors, to this day, tell their

patients that their implants look fine. (I'm sure the implants

usually do look fine, but the havoc above and below the implants is

often being ignored.) So, if you want to get mad at anyone, get mad

at them. But, don't condemn the manufacturer (they couldn't have

known about this problem, and as many have already pointed out,

probably saved some of your lives), or the great surgeons who have

found some good ways to correct the problem.

And, don't hold your breath that anyone is going to be able to

convince Oprah to do a show on this. It's something that's been

discussed on the internet since its creation. (Do a Google search on

flatback and oprah, or even scoliosis and oprah, and you'll see what

I'm talking about.) It's never going to reach everyone, but anyone

with Harrington rods can do an internet search and find hundreds of

articles and forums on the subject.

Hope I didn't offend anyone.

Regards,

> > > >

> > > >> This is the part of the whole thing that angers me, anyone

> who

> > has had

> > > >> Harrington Rods installed in them should be told of Flatback

> by

> > the

> > > >> manufacturer, so they can get themselves checked by a

> reputable

> > doc

> > > > with

> > > >> experience. They have known since the eighties that this

> > > > complication is

> > > >> possible, and alas, we have had to go it alone finding doc's

> > that

> > > > have a

> > > >> clue whats going on. Lost years I'll never get back.

> > > >

> > > > scoliosis veterans * flatback sufferers * revision candidates

> > > >

March 4, 2006

Dear ,

I don't think you got the idea I was trying to get across, I'm not mad, just

want info out to those of us that got the rods, that this complication is

out there, and that they should get themselves checked. As you and I have

said that Flatback related to the rods has been documented since the

eighties, and yet through this group and other groups we have met people who

had Harrington Rods installed in them in the late eighties. Why I can't

figure! Someone should step up to the plate and in the past with other

implants it has been the manufacturer who has, or maybe has been forced to

do so by litigation.

I'm thankful for the Harrington Rod surgery, it was the best for us at the

time, but when complications with anything arrises, it should be delt with

and those affected by it made aware it's a possibility. I'm not talking

about blame, I'm talking about awareness. We shouldn't have to go from doc

to doc not knowing whats wrong, and getting zero help. Many of you got a lot

more painfree years than I did, I knew something was wrong back in the mid

eighties, after 11 years of having my rod. Back then I had to depend on

doc's to help me find out what was wrong, no internet to look this whole

thing up, and doc's were little help. At least now we have the internet and

good groups out there to help, exactly why I stay with the group.

There has to be a good way to get the info out, just a personal wish of

mine, I hate the idea that there are a lot of poeple like me running from

doc to doc, hoping to get an answer and not getting one.

Colorado Springs

[ ] Re: If i am reading correctly...

> Hi...

>

> I've tried to keep quiet on this issue, but just can't do it any

> longer. :-) The problem is not with the manufacturer, and not with

> the many doctors that have changed the lives of so many here. I

> believe the problem is with the local spine surgeons who have had

> information about problems with Harrington rods available to them

> since the mid-1980's. Some of these doctors, to this day, tell their

> patients that their implants look fine. (I'm sure the implants

> usually do look fine, but the havoc above and below the implants is

> often being ignored.) So, if you want to get mad at anyone, get mad

> at them. But, don't condemn the manufacturer (they couldn't have

> known about this problem, and as many have already pointed out,

> probably saved some of your lives), or the great surgeons who have

> found some good ways to correct the problem.

>

> And, don't hold your breath that anyone is going to be able to

> convince Oprah to do a show on this. It's something that's been

> discussed on the internet since its creation. (Do a Google search on

> flatback and oprah, or even scoliosis and oprah, and you'll see what

> I'm talking about.) It's never going to reach everyone, but anyone

> with Harrington rods can do an internet search and find hundreds of

> articles and forums on the subject.

>

> Hope I didn't offend anyone.

>

> Regards,

>

>> > > >

>> > > >> This is the part of the whole thing that angers me, anyone

>> who

>> > has had

>> > > >> Harrington Rods installed in them should be told of Flatback

>> by

>> > the

>> > > >> manufacturer, so they can get themselves checked by a

>> reputable

>> > doc

>> > > > with

>> > > >> experience. They have known since the eighties that this

>> > > > complication is

>> > > >> possible, and alas, we have had to go it alone finding doc's

>> > that

>> > > > have a

>> > > >> clue whats going on. Lost years I'll never get back.

>> > > >

>> > > > scoliosis veterans * flatback sufferers * revision candidates

>> > > >

March 4, 2006

Hi ...

Actually, I think I do get your point.

As I stated previously, I don't think the manufacturer is still in

existence. Even if they were, because of HIPA, they would not have

access to individual patients. The best they could do would be to

inform the surgeons, who should already by VERY familiar with the

problem. I personally don't think that telling every patient that

they might have a problem is the solution anyhow, but that's just my

opinion. (I think that most of us know that the more we focus on a

problem, the more of an issue it can become.) And, what would you

tell everyone? To avoid any activity that puts stress on the discs

above and below the fusion? I've done just that and still have

problems both above and below. If I were in your shoes, I'd want to

live my life whatever way I wanted, and that if and when I had a

problem, I'd want access to a surgeon who knows that the problem

exists and can either fix it or refer me to someone who could.

You're absolutely right that you shouldn't have to go from doctor to

doctor to find out what's wrong. If you, or anyone else, went to a

spine surgeon and were told that nothing was wrong, you should address

the issue with that surgeon.

--

> >> > > >

> >> > > >> This is the part of the whole thing that angers me, anyone

> >> who

> >> > has had

> >> > > >> Harrington Rods installed in them should be told of

Flatback

> >> by

> >> > the

> >> > > >> manufacturer, so they can get themselves checked by a

> >> reputable

> >> > doc

> >> > > > with

> >> > > >> experience. They have known since the eighties that this

> >> > > > complication is

> >> > > >> possible, and alas, we have had to go it alone finding

doc's

> >> > that

> >> > > > have a

> >> > > >> clue whats going on. Lost years I'll never get back.

March 4, 2006

And let's remember a lot of us can't even GET to a surgeon until we've

exhausted the " conservative care options " . That means we end up seeing

physiatrists and PTs. I saw a SPINE SPECIALIST physiatrist in 2001 at a

MAJOR BOSTON ORTHOPEDIC HOSPITAL, and he apparently had no intention of even

telling me of the existence of flatback, but told me I had hip flexion

contractures, and " that's just soft tissue stuff; you can work it out " .

LIKE FUN I COULD! Only when asked point blank if I had flatback did he

allow that yes, I have it. But mainly all he told me to do was exercise

more (and I already had a pretty respectable exercise regimen -- I suspect

he just didn't pay attention when informed about it.) I had told him about

my knee pain, and he said " do Stairmasters. "

So, what do we do when the highly placed medical professionals choose not to

concern themselves with our pain?!!!

I'm actually a little madder at this particular guy now than I was 5 years

ago because of the way he treated my cousin just last week. She has

mega-pain from her Marfan's, degeneration all through her spine, and bone

spurs right where she has the most agonizing pain, that hurts worse every

time she moves her fingers, and this is like level 9 or 10 WITH Oxycontin.

So he tells her he doesn't need the theatrics (tears of pain and

frustration), that she's had too much surgery, and she needs to learn to

live with it.

So.........

Sorry, , but these guys make their money abusing people in serious

pain, while lesser-paid PTs do the real work. Do we need to EDUCATE

them?????? Maybe a little empathy education???? Like, perhaps, a week or

two of level 10 pain and lead weights to make their bodies off-balance, with

at least 30 minutes per day doing STAIRMASTERS?!!!!

Dream on. The only way to reach all the patients with problems like

flatback is to reach the PATIENTS.

/rant

Sharon

[ ] Re: If i am reading correctly...

> Hi ...

>

> Actually, I think I do get your point.

>

> As I stated previously, I don't think the manufacturer is still in

> existence. Even if they were, because of HIPA, they would not have

> access to individual patients. The best they could do would be to

> inform the surgeons, who should already by VERY familiar with the

> problem. I personally don't think that telling every patient that

> they might have a problem is the solution anyhow, but that's just my

> opinion. (I think that most of us know that the more we focus on a

> problem, the more of an issue it can become.) And, what would you

> tell everyone? To avoid any activity that puts stress on the discs

> above and below the fusion? I've done just that and still have

> problems both above and below. If I were in your shoes, I'd want to

> live my life whatever way I wanted, and that if and when I had a

> problem, I'd want access to a surgeon who knows that the problem

> exists and can either fix it or refer me to someone who could.

>

> You're absolutely right that you shouldn't have to go from doctor to

> doctor to find out what's wrong. If you, or anyone else, went to a

> spine surgeon and were told that nothing was wrong, you should address

> the issue with that surgeon.

>

> --

>

>> >> > > >

>> >> > > >> This is the part of the whole thing that angers me, anyone

>> >> who

>> >> > has had

>> >> > > >> Harrington Rods installed in them should be told of

> Flatback

>> >> by

>> >> > the

>> >> > > >> manufacturer, so they can get themselves checked by a

>> >> reputable

>> >> > doc

>> >> > > > with

>> >> > > >> experience. They have known since the eighties that this

>> >> > > > complication is

>> >> > > >> possible, and alas, we have had to go it alone finding

> doc's

>> >> > that

>> >> > > > have a

>> >> > > >> clue whats going on. Lost years I'll never get back.

>

> scoliosis veterans * flatback sufferers * revision candidates

>

March 4, 2006

Hi Sharon...

I think you actually proved my point. You knew about flatback, but

you still didn't get the proper treatment. Your medical professional

either didn't know about it or for whatever reason, didn't diagnose

it. You only got treatment when you pushed.. the same thing anyone

with a lot of back pain would (or at least should) hopefully do.

Lets assume that somehow, you could get the word out to everyone who

has Harrington rod(s). Most of them would probably go to the very

same surgeons who are not diagnosing flatback in the first place. Or,

if they did somehow manage to diagnose it, would you trust those same

surgeons to actually operate?

I'd like to use a business associate of mine as an example. She was

the first person I ever met who had had surgery for her scoliosis. I

met her before I had my own surgery. She has Harrington rods

implanted by Harrington when she was a teenager. When I ask her

about it, she says she has some daily pain. I've always urged her to

see a specialist, but she keeps resisting. I'm fairly certain that

if/when her pain gets really bad, she'll seek help. Would it be of

any benefit to talk to her about flatback? I personally don't think so.

I've thought many times of moving away from Northern California. I've

also thought about early retirement. The reason I don't do either is

that I want access to the best medical care. It's unfortunate in this

country, that we don't all have access to that same level of care.

Again, just my $.02. :-)

Regards,

> >> >> > > >

> >> >> > > >> This is the part of the whole thing that angers me,

anyone

> >> >> who

> >> >> > has had

> >> >> > > >> Harrington Rods installed in them should be told of

> > Flatback

> >> >> by

> >> >> > the

> >> >> > > >> manufacturer, so they can get themselves checked by a

> >> >> reputable

> >> >> > doc

> >> >> > > > with

> >> >> > > >> experience. They have known since the eighties that

this

> >> >> > > > complication is

> >> >> > > >> possible, and alas, we have had to go it alone finding

> > doc's

> >> >> > that

> >> >> > > > have a

> >> >> > > >> clue whats going on. Lost years I'll never get back.

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

March 4, 2006

---Sounds like we might be doing better than one of the gals on this

board from Canada...how long did that poor girl wait for an appt.. a

a few years????...i'll take our system anyday over that!! I wanted to

cry for her!! I can;'t imagine..at least I had the choice after I

found out what was wrong with me to make decisions as soon as I could

and wanted to. I agree, if you do not have insurance, that is a

problem but it does not sound like some of the " other " countries are

doing much better....,PA

In , " Racine " <linda@...> wrote:

>

> Hi Sharon...

>

> I think you actually proved my point. You knew about flatback, but

> you still didn't get the proper treatment. Your medical

professional

> either didn't know about it or for whatever reason, didn't diagnose

> it. You only got treatment when you pushed.. the same thing anyone

> with a lot of back pain would (or at least should) hopefully do.

>

> Lets assume that somehow, you could get the word out to everyone who

> has Harrington rod(s). Most of them would probably go to the very

> same surgeons who are not diagnosing flatback in the first place.

Or,

> if they did somehow manage to diagnose it, would you trust those

same

> surgeons to actually operate?

>

> I'd like to use a business associate of mine as an example. She was

> the first person I ever met who had had surgery for her scoliosis.

I

> met her before I had my own surgery. She has Harrington rods

> implanted by Harrington when she was a teenager. When I ask

her

> about it, she says she has some daily pain. I've always urged her

to

> see a specialist, but she keeps resisting. I'm fairly certain that

> if/when her pain gets really bad, she'll seek help. Would it be of

> any benefit to talk to her about flatback? I personally don't

think so.

>

> I've thought many times of moving away from Northern California.

I've

> also thought about early retirement. The reason I don't do either

is

> that I want access to the best medical care. It's unfortunate in

this

> country, that we don't all have access to that same level of care.

>

> Again, just my $.02. :-)

>

> Regards,

>

> > >> >> > > >

> > >> >> > > >> This is the part of the whole thing that angers

me,

> anyone

> > >> >> who

> > >> >> > has had

> > >> >> > > >> Harrington Rods installed in them should be told

of

> > > Flatback

> > >> >> by

> > >> >> > the

> > >> >> > > >> manufacturer, so they can get themselves checked

by a

> > >> >> reputable

> > >> >> > doc

> > >> >> > > > with

> > >> >> > > >> experience. They have known since the eighties

that

> this

> > >> >> > > > complication is

> > >> >> > > >> possible, and alas, we have had to go it alone

finding

> > > doc's

> > >> >> > that

> > >> >> > > > have a

> > >> >> > > >> clue whats going on. Lost years I'll never get

back.

> > >

> > > scoliosis veterans * flatback sufferers * revision candidates

> > >

Sign In

Re: If i am reading correctly...

Recommended Posts

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest