Re: For and Everyone - I got the stats!

[Guest guest]

Andy,

That is amazing! Thank you so much for writing them and sharing their

response with us! It makes my mind start churning, wondering how many

of them (us) had fusions extending into the lumbar region that

destroyed lordosis so much that they developed or will develop

increasingly worse symptoms of flatback syndrome.

loriann

>

> Hi and Everyone,

>

> You'll never believe this! I sent a letter of inquiry in August to the

> Scoliosis Research Society asking for the number of people who

> underwent scoliosis surgery from 1970 and 1990 - and I finally got a

> phone call from them! And here's their estimated number: 40,000 per

> year! So, over twenty years, there have been approximately 800,000

> fusions for scoliosis performed in the US! Almost a million of us!

>

> Andy

>

[Guest guest]

Hi

Loriann,

According to the person I spoke with, all

of those patients will ultimately need revision surgery! He said there might

even be more of us, but that the 800,000 is a reasonable working number.

Interestingly, he also talked about the

Society’s current efforts to have docs here adopt a prophylactic technique

practiced in Europe and Asia (it began in Germany) for pre-fusion adolescents that aims to stabilize the spine

before a true deformity develops. It’s called the Schroth method, after

Katharina Schroth, and entails a specific, long-term exercise regimen. Their

goal is to help people with scoliosis avoid surgery altogether. It includes exercises

like Pilates!

He also told me there is a new on-line

journal specifically about scoliosis. It’s through Pub Med and here’s

the site: http://www.pubmedcentral.gov/articlerender.fcgi?artid=1459275

..

Andy

Re: For

and Everyone - I got the stats!

Andy,

That is amazing! Thank you so much for writing them and sharing their

response with us! It makes my mind start churning, wondering how many

of them (us) had fusions extending into the lumbar region that

destroyed lordosis so much that they developed or will develop

increasingly worse symptoms of flatback syndrome.

loriann

>

> Hi and Everyone,

>

> You'll never believe this! I sent a letter of inquiry in August to the

> Scoliosis Research Society asking for the number of people who

> underwent scoliosis surgery from 1970 and 1990 - and I finally got a

> phone call from them! And here's their estimated number: 40,000 per

> year! So, over twenty years, there have been approximately 800,000

> fusions for scoliosis performed in the US! Almost a million of us!

>

> Andy

>

[Guest guest]

Hi, Andy --

Once again, I want to thank you for your prodigious efforts to get

this information. It's terrific that these finally paid off. What a

wonderful suprise to find your email (and this post as well) with the

statistic of 800,000. I guess we suspected as much, but I am

absolutely thrilled to have it confirmed by the SRS.

Best,

>

> Hi and Everyone,

>

> You'll never believe this! I sent a letter of inquiry in August to

the

> Scoliosis Research Society asking for the number of people who

> underwent scoliosis surgery from 1970 and 1990 - and I finally got a

> phone call from them! And here's their estimated number: 40,000 per

> year! So, over twenty years, there have been approximately 800,000

> fusions for scoliosis performed in the US! Almost a million of us!

>

> Andy

>

[Guest guest]

ALL of them?

Do you know if this is predicated on the actual rates of revision

surgery now?

I am still reeling from this additional bit of information. I have

never known any surgeon who assumed that everyone with a Harrington

rod would need flatback revision. It seems reasonable to assume that

this might be the case, but to my knowledge, no one has ever said as

much . . . More details, please!

Did this gentleman give you any citations in support of his

prognosis?

The whole thing raises the question of whether that " lumbar fusions "

warning was too limited. At the time I was developing flatback with

a fusion to L-3 or so, the SRS people were saying only " low lumbar "

fusions were at risk. Can we assume that all fusions are at risk???

We all know people with fusions only into the thoracic area. And we

all know people who have nonsegmental (Harrington) instrumentation

but who claim they are problem free. Did it sound to you as though

all of these people will ultimately need revision?

This is mind boggling. Please feel free to write to me privately

with any further info. you may have. I want to be very sure of

myself when I present this to a prospective publisher or agent,

considering it is QUITE a bombshell . . .

Best,

> >

> > Hi and Everyone,

> >

> > You'll never believe this! I sent a letter of inquiry in August

to the

> > Scoliosis Research Society asking for the number of people who

> > underwent scoliosis surgery from 1970 and 1990 - and I finally

got a

> > phone call from them! And here's their estimated number: 40,000

per

> > year! So, over twenty years, there have been approximately

800,000

> > fusions for scoliosis performed in the US! Almost a million of

us!

> >

> > Andy

> >

>

[Guest guest]

I am still in shock.

What this means is that the Harrington rod was no d--- good for

anyone at all. It deformed every single patient. It wreaked havoc on

the lives of an entire generation with scoliosis.

Words fail me.

> >

> > Hi and Everyone,

> >

> > You'll never believe this! I sent a letter of inquiry in August

to the

> > Scoliosis Research Society asking for the number of people who

> > underwent scoliosis surgery from 1970 and 1990 - and I finally

got a

> > phone call from them! And here's their estimated number: 40,000

per

> > year! So, over twenty years, there have been approximately

800,000

> > fusions for scoliosis performed in the US! Almost a million of

us!

> >

> > Andy

> >

>

[Guest guest]

Correction: If this projection is correct -- 800,000 of us with

Harrington rods, every single one of us eventually requiring

revision surgery -- then that infernal hardware deformed at least

TWO generations of us.

I am especially wondering about the very first patients to get the

rod -- the ones for whom Dr. Harrington originally created it --

patients whose scoliosis was caused by poliomyelitis, and whose

spines were not strong enough to withstand fusion without

instrumentation. Do these folks, too, face the nightmare of massive

revision surgery on their already compromised spines?

God help us all.

> > >

> > > Hi and Everyone,

> > >

> > > You'll never believe this! I sent a letter of inquiry in

August

> to the

> > > Scoliosis Research Society asking for the number of people who

> > > underwent scoliosis surgery from 1970 and 1990 - and I finally

> got a

> > > phone call from them! And here's their estimated number:

40,000

> per

> > > year! So, over twenty years, there have been approximately

> 800,000

> > > fusions for scoliosis performed in the US! Almost a million of

> us!

> > >

> > > Andy

> > >

> >

>

[Guest guest]

Hi ,

Sorry for any confusion - I meant to write that those who had lumbar

fusions with an H-Rod for a scoliotic curve (between 1970 and 1990)

will most probably need revision surgery.

If you'd like, for purposes of a quote in your book, I can get an

official statement - that is, if I can get a response from an email

or phone call. Last time it took 3 months! Would that be helpful?

Best,

Andy

>

> ALL of them?

>

[Guest guest]

Hi Andy,

If this is their " official position, " I'd love to have a copy to show

to some docs I've seen who look at me like I'm out of my mind for

believing that revision surgery will at some point be inevitable for

me, and for wondering if having it sooner, rather than later, might

give me a better outcome.

I wonder what percent of those with lumbar H-Rod fusions have already

had revision surgery and what percent are still completely in the

dark, not having a clue, nor being forewarned, that symptoms, which

may start out mildish, will get very nasty as time goes on.

loriann

> >

> > ALL of them?

> >

>

[Guest guest]

Keep in mind Harrington rods were, at one point, the most state of

the art treatment avaliable and there was no better option readily

available to stop the progression of life threatenning cases of

Scolisis.

I was treated with Luque rods to prevent my death as a child, but I

have heard of other instances where the Harrington rods saved lives in

much the same situation. Harrington rods did help in some aspects when

you take that perspective into account.

Jolynn

>

> I am still in shock.

>

> What this means is that the Harrington rod was no d--- good for

> anyone at all. It deformed every single patient. It wreaked havoc on

> the lives of an entire generation with scoliosis.

>

> Words fail me.

>

>

>

>

>

>

[Guest guest]

HI Loriann,

While I am in no way telling anyone to run and take a leap to the

table I really don't see any benefit in waiting until your life is

alomst unbearable to get the surgery. While it is not fun I felt

that letting it rob me of more time and joy in my life would be

rediculous.

My surgeon nodded and agreed all around when I wasd asking " Why

should I wait to be more in pain and more disabled? " and another

good one was " Isn't revision harder to heal from the older you get? "

I also asked " Isn't there a chance that the amount of correction

acheived is comprimised by how advanced the flatback is? "

I know that feeling when the ill informed DRs are looking at you

funny because my PCP looked at me like I was crazy when I said I was

glad that it was almost time for my revision. He acted like I had

nothing to be excited for as I was envisioning throwing my cane off

a bridge while wearing clothes that fit and standing upright.

Why is it that physicians try to minimize things they don't or won't

try to understand?

It is the whole " I am not familiar with it so you must not have it "

diagnosis. This really annoys me.

Jolynn

> > >

> > > ALL of them?

> > >

> >

>

[Guest guest]

Jolynn,

Well said! And how have you been feeling lately?

> Why is it that physicians try to minimize things they don't or won't

> try to understand?

>

> It is the whole " I am not familiar with it so you must not have it "

> diagnosis. This really annoys me.

>

> Jolynn

[Guest guest]

Really good! Thanks for asking. I sometimes forget that I even had

surgery. So do others around me who then realize after they ask me

to cary something heavy and I look at them like they are from

another planet.

I feel like I should wear the brace or bone growth stimulator as a

reminder to myself and others:)

I just went grocery shopping by my myself and it felt so liberating.

I can't get anything heavy or down low but I stay mostly on the

outside edge where all the healthy stuff is anyway like produce and

dairy.

Jolynn

>

> Jolynn,

> Well said! And how have you been feeling lately?

>

[Guest guest]

Hi Beth,

Sorry, I don't know the answer to your question, but have an

additional one. I wonder what is the longest anyone has had a long

fusion to the sacrum (either with old style instrumentation or with

new style) with NO problems of unexplainable weird numbness or pain.

I've sort of lost track on when the first pedicle screw/Isola rods

started routinely being put in people. Has it been more than 15 years

yet? Can't help but wonder how those people will be doing in 10-15

MORE years,

loriann

>

> Loriann and friends,

>

> I had a thoraco-limbar curve originally (T10 toL4); my first

procedure (1970) to " correct " the scoliosis was with a H-rod...one

rod, no bends or contours to accomodate a natural lordosis, just one

loooong rod. It wasn't until I had my revision procedure (2000) that

it dawned on me that for 30-some years I had had no " shape " !! That may

sound odd to many but as we all know, we teen girls with scoliosis

became very adept as hiding/masking our flaws....whether it was with

baggy shirts (that we would never dream of tucking into a pair of

jeans or slacks!!) or with jumpers (that was my particular favorite!).

I was never much of a fashionista anyway and I detested mirrors back

then because to add insult to injury, I was also blessing with a

raging case of acne from age 11 until I finally had my face " sanded "

several times in my early 20's. But I digress...back to the scoliosis

thing. Once I started working I was rarely out of O.R. scrubs and when

I did go out I never much

> worried about what I wore as long as it was clean and

pressed...mind you, this was back in the late 70's and into the 80's.

I wore what I didn't feel conspicious in...my friends just figured

that my quirkey way of dressing was due in no small part to my quirkey

personality. I have never found it necessary to " fit in " because in

the recesses of my brain I never felt or looked like everyone else.

>

> So when I started having back pain in my 30's, I didn't talk about

it much because I still believed what I had been told in 1970 when I

had my " corrective " surgery...that once I had the Harrington procedure

I would good for life...that once the fusion was solid (after spending

nearly 4 months in bed in the Riser cast then another 4 in the Riser

" walking??!! " cast) I wouldn't have to worry about my curveture of the

spine ever again. Isn't that what all of our Ortho surgeons told our

families and us??!! Even the 2 " minor " procedures I had done were not

considered a problem; both were for bone overgrowths at the bottom of

my fusion that I managed to crack while skiing...once in 1975 snow

skiing in Aspen and once in 1979 water skiing on Lake Erie. Even then,

no one ever mentioned that years later I would start to fall forward

and eventually be in so much pain that I'd still end up relying on

pain killers to function!!!

>

> Which begs the following question...since WE were never told that

someday we would have to have revision surgeries, do Ortho surgeons

doing corrective procedures in the 21st century tell THEIR patients

that even segmental, pedicle screw fusion procedures do not guarantee

long term, problem-free results??? If anyone knows the answer to that

question I'd really like to know.

>

> All the best,

> Beth

>