Thanks to Carol

[Guest guest]

Thanks, Carol, for the lovely, positive feedback! Occasionally over the years,

questions have arisen as to the need for this wonderful site since SO much has

changed since it's early beginnings. But while the treatments and surgical

procedures for Scoliosis and Flatback Syndrome may have evolved (thank

God!)there is still much to learn from it's history. And who better to educate

the " newbies " than the " veterans " !!

Diagnosis and treatment options have improved for all phases of this Orthopedic

nightmare but the physical and emotional impacts of it, sadly, have not. There

are still folks out there who remain as clueless and frightened as to what is

happening to them as many of us once were. And sadly, there are still far too

many so-called " Adult Scoliosis Specialists " and " Pain Management Specialists "

who remain ignorant of the advances in these fields! I have much more respect

for physicians/specialists who have the courage to admit, " I'm not sure what's

happening to you or why! Let's do some research into this and see what we can

come up with! " than the ones who rush to judgment and begin unnecessary and/or

incorrect treatment plans!

I admire physicians who encourage their patients and their families to do

internet searches, ask questions, question treatments, etc. My Orthopedic

surgeon, while not new to Flatback Syndrome and it's various treatment options,

originally did for me, what was considered in 1998, to be a bold/unusual

technique; he performed an anterior, laproscopic procedure of disc removals and

inserted pedicle screws at L3,4,5,. NOT to correct the Flatback deformity but in

the hopes that it would relieve some of my pain and neurological symptoms to

give me the time I needed to prepare myself and my family for the much more

invasive, extensive, posterior revision that he knew I'd eventually need but was

not emotionally ready to commit to at that time. He told us it was a " stop-gap "

measure not the " optimum, corrective surgical procedure " I would eventually

need; but he instinctively recognized that I was understandably wary of what I

was hearing because I had been misdiagnosed, under-treated, and in short, been

put through a physical and emotional hell by multiple so-called Adult Scoliosis

and Pain Mgmt " specialists " for the previous 4 1/2 years!!

When I did finally consent to the posterior revision, I was physically and

emotionally 110% ready to commit to whatever would be necessary to achieve the

best outcome possible. My family and I had 110% FAITH IN HIM and the decisions

that he made FOR US! It gave him the confidence to do a more aggressive

procedure than he normally might have done to another patient because he knew he

had my total commitment. That's why he took the chance of doing much more

aggressive osteotomies to hopefully obtain a better final result...and it

WORKED!! And while the more aggressive approach required me to once again be

confined to bed for a few months(just to ensure that the pedicle screws would

stay in their positions until the fusion mass could maintain the correction)and

also required a far greater commitment by my husband and sons to care for me at

home while I was recuperating, the final results were worth every sacrifice we

had to made!!

My surgeon was honest and straight-forward with all of us from the get-go. He

NEVER promised that I would ever be totally pain free; he answered all our

questions (sometimes again and again!)and explained things in ways we could ALL

understand. I have a medical background and understood words, terms and phrases

that went over my husband and sons' heads; they understand cars, motorcycles and

mechanics! So when he answered their questions, he used visual aids (a movable

spine model, screws, screwdriver, hammer, etc) and got to indulge in his

" frustrated-mechanic/Orthopedic surgeon " side as well, using mechanical terms

and phrases that made absolute sense to my guys!! And although the procedure

itself took a bit longer than expected, he made sure that one of the residents

and/or floating surgical nurses kept my family/friends informed throughout the

long 11 1/2 hrs., and even accompanied them into the Neuro ICU post-op to

prepare them for how bizarre/bloated I would look and be there to answer any

further questions. Now THAT'S a CARING, DEDICATED SURGEON!!

My Pain Mgmt specialist has been just as honest and forthcoming with my family

and me. For the past 9+ yrs he has never rushed us through an appointment,

answers our questions to the best of his ability and when he doesn't know an

answer, admits it and will sit there and do internet searches until we're all

satisfied...including him!! When he reads about new research/treatments specific

to Flatback Syndrome and related Pain Mgmt.treatments, he'll e-mail me computer

links or scan an article to me!

I've been to hell and back in my quest to find the best physicians I could for

my own Flatback and related problems.But my end results, the physicians who have

and are currently treating me are among the GREATEST BLESSINGS IN MY LIFE!! If I

can save just one person...one family...from even one MOMENT of some of the hell

I've experienced, then the time Ive spent writing my posts for the Feisty site

over the years...the good and the bad...will have been time well spent!! I've

been the recipient of such invaluable info and advice from so many others on

this site!

I can still vividly remember the first time I found the ,

totally by accident. It was after my very 1st visit to my current Ortho surgeon

and also the very 1st time I'd ever heard the term " Flatback Syndrome " . I sat

down at our 1st home PC, typed in the term in a search engine (these were

pre-Google days, remember friends!!)and found this health site. We

didn't have near as many members back then but I devoured every word over and

over again...and bawled my eyes out!! I could not believe that I had found these

amazing people who were suffering in the exact ways I was! Some had answers,

many had questions, but ALL had this strange thing called Flatback Syndrome. I

had found a home...a place of refuge and peace and friends.

I still think of this site as my saving grace...always will...

All my 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

> >

> >

> >

> >  

> >

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