Re: appt yesterday lead to INTENSE frustration!!!

[Guest guest]

Weeeeelll, Sharon, I see you are feeling particularly feisty this

morning.... (I like that in a flatbacker!)

I actually wasn't for once, but then I got feistier as I started to

read parts of the SRS website, which I do on ocassion just to see if

they've added any info. about flatback.

Everything was going well for a while -- I was in the medical

professional part of the site reading some interesting scientific

program paper abstracts from the 2003 meeting like #2 regarding the

most accurate way to take a sagittal x-ray, #47 and #48 on the

advantages or disadvantages of fusing to L5 as opposed to the sacrum,

and #52 regarding complication rates by one of the surgeons I'm

considering for the surgery I'll need, and #63 and #64 exploring if

age of the patient affects the outcomes.

Yup, all was going well until I came across the mission statement of

the SRS. Then I started to get a little feisty. Yeah, hopefully

they are fostering our care with the dealings they have with doctors,

but why, at the same time, can't they also foster our care by putting

more about flatback on the patient/public part of their site?? I

actually emailed them about this last fall but I don't recall getting

any response. I realize that we are but one of many spine problems

they have to think about, but because so many of us have struggled to

get an accurate diagnosis, in my view, more exposure on the patient

education side of things is needed.

Keep up the good feisty work, Sharon and everybody!

loriann

[Guest guest]

Cam,

I once wrote to one of those spine websites where the docs will

answer questions asking a similar question to yours. Here's the link

if you want to read it (hope it works):

http://www.spine-dr.com/site/BB/index.cfm?

page=Detail & ID=372 & action=search & searchterm=flatback & type=partial & star

trow=1 & index=1

As I previously posted, I had emailed SRS once, and do not recall

getting a response. Hopefully you'll have better luck than me if you

contact them...,

loriann

> I think if we do our homework we can probably present an

interesting

> enough story...but the first question I think we need answered is

how

> many potential " flatbackers " out there are there? When I saw Dr.

> Rand last month he said he hardly saw this condition a few years

ago

> and now he deals with it routinely...so the pace of " problems "

> appears to be accelerating. What I've gleaned is to the one, every

> Harrigton patient that was fused to a lumbar vertabrae will, not

> might, will eventually need revision surgury (or suffer a serious

> degradation of their quality of life). Is that correct information?

> And as near as I can tell from the records we have posted here,

every

> one of us had a different original doctor....and they certainly

> weren't Harrington " virgins " ...my doctor seemed to be pretty busy

> with scoliosis surguries...(I think revison surgury is a growth

field)

> Does anyone think the SRS can/would estimate the potential numbers?

> Cam

[Guest guest]

Yeah, they could call it " Extreme Makeovers Gone Bad " .....

Something else dawned on me. What we need is a Flatback (or HARMS)

Research Society!!

loriann

> Lorianne...I love the makeover idea!!!! Just kidding...really, I

> thought I had my makeover in '72 and look whats happened! But maybe

> that is the angle.....hhhmmmmmm. Cam

[Guest guest]

Exactly that!..Cam

- In , " loriann262000 "

<lcmelko@f...> wrote:

> Yeah, they could call it " Extreme Makeovers Gone Bad " .....

>

> Something else dawned on me. What we need is a Flatback (or HARMS)

> Research Society!!

>

> loriann

>

>

> > Lorianne...I love the makeover idea!!!! Just kidding...really, I

> > thought I had my makeover in '72 and look whats happened! But

maybe

> > that is the angle.....hhhmmmmmm. Cam

[Guest guest]

Sharon,

Click on the sixth link down on the left hand side of the SRS.org

page -- medical professsionals.

Also, thanks to the person that posted the note about . I'm

sure that all of us on this site who have come to know her situation

feel the same punched in the stomach, shivery feeling right now. I'm

sorry I can't even begin to think of the right words to say.... I

sincerely wish her and her family strength and courage.

loriann

[Guest guest]

I have a few sources to call upon if you all are serious about

taking this up on the media forum. I took a quilt class with a guy

who owns his own TV Production company. (The View...Crossing

Over...and I forget what else.)

Also, my husband is friends/plays tennis with with Tom Blake, his

son is a tennis pro who outgrew scoliosis by bracing.

Russo had scoliosis as a child and was corrected by bracing.

I do know we'll get more attention by 'name-dropping' of these

famous people who have had experiences with scoliosis...not nearly

like us though.

More later...