Re: Belated Question for Beth

[Guest guest]

,

I think my post was in reference to something you posted about there not being a

" standard, operating procedure for ALL patients suffering from Flatback " . Jeez

lady, that was written during the Super Bowl...I can't remember what I had for

dinner last night!! But after re-reading my entire post, that's what I believe

it was. Someone had posed a question to the group asking if everyone had the

same revision procedure(s) done and you had responded that there were different

approaches by different physicians in different parts of the country/world.

I can't even keep track of all the different surgical procedures we have had

discussed on this site alone!! Let alone how they have changed and evolved over

the years! I've yet to read a post where anyone besides myself who's had a

laproscopic anterior revision procedure performed! Granted, that surgery was not

nearly as successful at correcting my Flatback deformity as the later posterior

procedure, but it did give me a couple of years with a bit less pain while I got

my head wrapped around the idea that I really did need the more invasive

posterior correction!!

Thanks again for reminding all of us about Mina's article(s). When I

first found that article after hearing about it FIRST ON THIS SITE many years

ago, I remember reading it through tears...tears of great joy that FINALLY, at

long last, I was reading about what was wrong with me!! After suffering through

several years of mis-diagnosis and NON-diagnosis, it was such a relief to

finally know I wasn't alone and more importantly, I WASN'T CRAZY!! i REALLY was

" FALLING FORWARD!! I also gave her article to my Disability attny. and he

included it with all my other medical evidence when I was finally granted

disability (after fighting for it for 6 yrs!!)

All the best,

Beth

> >

> > Hi Feisty friends,

> >

> > Once again I must agree with on this one. Y'all probably think I

have no opinions of my own but TRUST me...if you read back over some of my posts

in the past 10 yrs (WOW! 10 yrs!!), you will see that I've often been

" criticized " for my, oft' too vocal and long-winded opinions! But that's the

beauty of this site...we ALL have an equal opportunity to weigh in on the issues

we Feisties face day in and day out.

> >

> > Since I'm writing this on Super Bowl Sunday and I happen to live a mere 100

miles from Pittsburgh, PA. (GO STEELERS!!!) I hope our HARD WORKING moderators

will allow a� wee football reference...there is no 'standard play book' when

dealing with Flatback Syndrome or Failed Spine Syndrome. Each patient is

unique...each set of symptoms frustrating and often baffling, for the patient,

for the physicians and surgeons and for the friends and families. So there is no

such thing as S.O.P. (standard operating procedure) when it comes to revision

surgeries. And anyone who tells you differently is, well...to put it nicely,

uninformed.

> >

> > The evolution of surgical procedures for correction of scoliotic deformities

is a case study in the history of� Orthopedics, mechanics, carpentry, and high

tech, computer technology. From the early days (I'm talking waaaay back to the

60's and 70's here folks) with weeks of pre-op traction, months of total bed

rest in those horrendous Riser body casts and surgical stainless steel

Harrington rod instrumentation,� to surgical titanium pedicle screws,

segmental instrumentation, Evoked Response Spinal Cord monitoring and out of bed

within the first 24 hrs...look how far we've come, my friends!!

> >

> > Just as the surgical procedures have evolved, so have the opinions on what

the " optimum outcome " of a� revision surgery for Flatback Syndrome should be.

Anyone who has watched or experienced first-hand the devastating physical and

emotional effects of this " monster deformity " knows that it is a multi-faceted

problem. There's the Orthopedic aspect...the often slow realization that we

can't stand up straight no matter how much we try; or my favorite... the

infamous (to US at least!!) penguin walk! Then there's the Medical aspect...the

increasing pain, fatigue, inability to get a decent nights' sleep, etc.

> >

> > And last, but certainly not least, there's the emotional/mental aspect...and

here's where I tend to hop on my soap box!! The realization that our lives at

perhaps the quite young ages of 35 -45 are changing... and NOT for the better!!!

Where are those " golden years " we've heard about??!! Personally, one of my

BIGGEST complaints about� Flatback Syndrome is, " Why the H-- did I go through

laying in bed for 6 months when I was 16 yrs/o... when ALL my friends were

starting to date and go to high school football games, going to dances and

perhaps, getting their first kiss??!! " " Why did my parents & brother sacrifice

SO much so that I could have the Harrington rod surgery??!! " Call it the " poor

me's " but there you have it!I� And I still get angry every time I think back

to when my Flatback symptoms first reared their ugly heads in 1994. I went

through months of appointments with local Orthopedic, Neuro docs, physical

therapy, myelograms, CT's, intra-dural

> > steroid injections...name it, I trudged through it, without ever being

given a definitive diagnosis! All the while trying to work, be a wife and raise

2 young boys. It wasn't until we moved in 1996 to a bigger city, with a more

progressive medical community, that I was even diagnosed!!� By then, I had

lost close to 3 " in height, was in constant painand had irreversible

neurological damage in my leg.

> >

> > Then there's the daily, intractable pain that physician after physician

after physician contribute to either menopause or " empty nest syndrome " or one

of my personal favorites, the " it's all in your head " diagnosis!! Trying to

explain to friends and family that " 2 Aleve DO NOT stop this pain! " Being looked

upon as a " drug seeker " by medical personnel who may never have heard of

scoliosis, let alone Flatback Syndrome. Being referred to as someone who " doctor

shops " for pain meds and/or the dreaded " narcotics " !! Seriously people...when is

the medical community going to wake up...perhaps READ an issue of� the Journal

of the American Medical Association (aka JAMA)... or info published by The

American Pain Foundation or a Pain Mgmt specialist...or, God forbid,� actually

LISTEN to a patient??!! Oops...put the soap box away, Beth!

> >

> > And for as many symptoms that are associated with Flatback Syndrome, so,

too, are there varied opinions as to what is the BEST approach� to correct it.

Every patient is UNIQUE. Every Orthopedic surgeon who treats patients with

Flatback Syndrome has his or her opinion regarding the " anterior vs posterior vs

the combo anterior/posterior " surgical approach. In my (very humble!) opinion

that is perhaps the most important reason to get second (and even third!)

opinions before committing to any type of revision procedure. And another reason

why this site is such an invaluable source of info for anyone researching

revision surgery. Over and over you read posts on the Feisty site about why it

is so vitally important to seek opinions and/or treatment from QUALIFIED,

Orthopedic surgeons who specialize in revision procedures! And why it's so

necessary for your peace of mind to continually ask questions and not be

satisfied until you get answers.

> >

> > Good thoughts go out to anyone struggling with making this huge,

life-changing decision; and to everyone who's got an upcoming revision

procedure. Keep us updated on your progress and don't hesitate to ask questions.

One of my favorite sayings is " The only stupid questions are the ones you DON'T

ask!

> >

> > All the best,

> > Beth

> >

> >

> >

> > �

> >

>