Not so horrifying article - Pat Burgess

[Guest guest]

I too have flat back complications arising directly from the

Harrington Rod, but like Pat, in 1978 (the year of my surgery) what

options were there?

It is far from an ideal solution, but without my Harringtons my life

would have been very different and much of what I have achieved would

not have been possible. I remain grateful for my surgeons attention

back then. Yes, with hindsight I would have liked a different long

term solution. And yes, I would like the medical profession to

recognise more freely there is a problem and perhaps contact patients

earlier.

There are problems, and a high chance of surgery ahead, but I am glad

I have had the option to get here, to have a full time fullfilling

job, the ability to play sport, watch my football team, have a life

partner, be financially independent. The future may hold something

very different, but at 16 years old in 1978, given the option of 25

years of mobility and realitivly normal life following surgery or

nothing at all and perhaps complete dependence, perhaps I would

choosen the former.

I agree with Pat, The article was not meant to be taken as has been.

I would perhaps had a caveat to the article to clarification to new

users, but this is a useful historical perspective and we should not

be scared of facing that, the alternative is to wipe away history.

Thanks everyone for your posts on this group page, although I

contribute little to the site the debates are well read and very

useful to those of us that are looking to the future and possible

surgery

Andy P

and lead a it was then the only option

>

> In regard to this article--all I can say is that in 1968 I had a

thoracic curve of over 60 degrees. I had Harrington Rod surgery. At

the time, that was the best they had and if I had not had that done,

I would not be here today. My heart would have been crushed. Yes, I

now have lumbar problems, but at least I am here. Every doctor that

I have gone to in the last 10 years for my lumbar problems told me

how good my thoracic fusion was. " Beautiful " was the word used.

> The article was not meant to be taken as has been...I am glad and

thankful I was able to have it done.

> Horrifying article

>

>

>

> Hi, All --

>

> Someone sent me the following link:

>

> http://www.scoliosisnutty.com/page.php?pg=214

>

> I went to the page. I found it extremely disturbing. Check it

out.

>

> And while you're checking it out, please bear in mind that Andy

Stanton obtained some very interesting stats from Joe O'Brien, a

spokesman for the Scoliosis Research Society: Up to one million

people have undergone spinal fusions for scoliosis which included

implantation of the now wholly discredited and defunct Harrington rod

instrumentation -- and every single one of those individuals is

expected to need revision surgery.

>

> [Note: Revision surgery, as we all know, is Quite A Big Deal --

considerably more massive and grueling than any first-time fusion for

scoliosis per se. In fact, the name is probably somewhat

misleading. " Revision surgery " evokes something reasoned,

straightforward, possibly even mild or innocuous. But let's not

forget that the original medical term -- abandoned early on, for

obvious reasons! -- was the more accurate " salvage surgery. " ]

>

> In other words: The Harrington rod, as the SRS itself has

ultimately had to concede, was a colossally dangerous and damaging

device which essentially crippled an entire generation of girls and

women (a few men, too) with severe progressive scoliosis. It did not

merely prove ineffective or limited in value for treating the

original deformity: It created a whole new deformity, the (also

innocuously named) " flatback syndrome " -- which has brought

unspeakable pain and suffering, disability, debility, life-

disruption, even despair ,to untold numbers of people.

>

> Now for my remarks about the Web page referenced above:

>

> There is no apparent attribution -- no source given for the

> information -- but it looks like standard Harrington PR from

way

> back when.

>

> I looked around the site a little bit. Whoever created this site -

-

> again, this information is ostensibly unavailable -- seems to

have

> pulled together a whole bunch of different writings, including

Mina's helpful articles (which, at least, are attributed

to Mina). So by surfing around the site, you may eventually

piece together the inference that the Harrington promo is --

well, perhaps a tad outdated, to say the least? But it is troubling

that all this stuff is basically thrown together with no context, no

guiding editorial hand-- and no name of anyone willing to take credit

for the enterprise.

>

> This is the kind of thing that disheartens me about the free-for-

all

> that the Internet seems to have become. Someone should be able to

do

> something about this kind of website, but I can not see what.

Since it is not a forum or a wiki, it can not be debated or

confronted openly for the benefit of the entire readership.

>

> In fact, the site is almost a case study in how NOT to function

responsibly online -- how to mislead or confuse any vulnerable people

who are still coming to grips

> with flatback syndrome and are hungry for accurate information.

You

> just gather up all the writing you can find from from other

people,

> throw it together with no care to avoid copyright infringement,

and make

> sure to include dangerously inaccurate junk without any attached

> warning. And you do all this anonymously, while making sure to

drum

> up some revenue from Google ads in the process. (On that side-

issue,

> does Google police its ads at all? Something tells me you could

> peddle Harrington rods via Google with impunity.)

>

> As someone else commented to me regarding the Harrington puff

piece: " It's as if you posted, without comment or discussion, a big,

bold statement to the effect that all pregnant women would do well to

drink lots of alcohol throughout their pregnancies. " "

>

> Yes, I am devoutly in favor of freedom of expression. Still,

there

> is something very wrong here . . .

>

> Just my two cents, folks.

>

>

>