Re: Thanks to Carol and also to Beth

[Guest guest]

Hello . . .

I want to thank both of you for your beautiful (and beautifully written) posts.

You are among the long-time stellar members of this group whom I can always rely

on for thoughtful insights and helpful information. I deeply appreciate your

participation, not to mention your instructive personal stories.

Beth, after all you've been through in your search for a decent and reliable

doctor, it sounds as if you've found yourself a couple of winners. It's always

heartwarming to read about caring, involved, and scrupulous docs like these.

I get the impression that your revision surgeon had not had tons of flatback

revision experience per se at the time he embarked on your big operation. But he

was so open-minded and willing to learn from all available sources (including

hits that came up on Internet searches) that he was able to apply all his

previous years of experience and expertise to your case while performing the

state-of-the-art procedure you neeed. It sounds as if he did very well by you.

In fact, you've actually made me question my standard advice: " Find a surgeon

with lots of specific experience in flatback revision! " Something tells me that

the surgeons who are still inducing flatback syndrome in their patients may be

plenty experienced; it's just that they closed the book years ago and decided

they had no need for continuing medical education.

Personally, I find it sobering -- or maybe the word I am seeking is overwhelming

-- to realize how easily a surgeon can go astray in correcting a flatback

deformity. For instance, until I heard about this, I almost would not have

believed how crucial one seemingly small consideration becomes when you're ready

to osteotomize and re-fuse: the patient's position on the operating table. It

seems that " what you see is what you'll get " in terms of the actual outcomeAs

I've mentioned before, my first revision surgeon -- a punctilious person if ever

there was one; just this side of OCD --took a long, last-minute look at my own

positioning and decided it was just not optimal; he actually broke scrub to

reposition my body a few millimeters.

I know just what kind of frustration, depression, even desperation you must have

felt during those years you spent searching for an informed and competent

doctor. Thankfully that hell you went through was not in vain. You just can't be

too careful --you have to hold out for someone qualified, which all too many

surgeons today still aren't, sad to say. As for pain management professionals,

bona fide and otherwise: Don't even get me started!

Do you remember one woman who wrote to us several years ago that she had spent

ten (10) years trying to find an appropriate spine specialist? I wish I could

remember which Feisty member that was. She had seen doctors in multiple states,

too, as her family moved around country.

Ten years! -- a whole decade of visiting one bozo after another, only to be told

" Beautiful fusion! " " No basis for this pain you're reporting! " " " Have you

considered seeing a psychiatrist, dear? " It's enough to give you a very severe

anger management problem, if not drive you to drink (or suicide). I am moved by

the persistence and determination, the patience and endurance, the profound and

massive courage of our intrepid Feisty survivors.

With gratitude to both of you two " pillars of the Feisty Forum, "

> > >

> > > 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

> > >

> > >

> > >

> > >  

> > >

> >

>

[Guest guest]

Hello everyone, I just wanted to share my doctors information with all of you. I know how important it is to have choices and to also find a doctor your comfortable with. I had my revision surgery in January so I am still recovering but I feel great compared to before the surgery! My doctor is Dr Antonacci located in Manhattan. The surgery was at Mt Sinai hospital and I cannot say enough about the care i received from everyone! The Dr. And his staff are so attentive and every appointment I feel like I am their only patient. The hospital staff were amazing! I did not wait for anything. They made my stay as pleasant as it could be with friendly faces and incredible care! If you look up the Doctor you can see that he is recommended by the Scoliosis research association. As for my recovery it is going

well! I just visited the Doctor 2 days ago and my xray looked very good and well as all my reflexes and posture. He wants me to wait for any PT on that portion of my spine. Just some light stretching and walking until June. I will be attending PT for my neck since i have had surgery on that area too and it is bothering me. Has been since an accident last year! Anyway i think all of you are very brave and strong women and I love that there is a place to hear about other experiences. Makes me feel like I'm not alone and not crazy! Thanks for sharing your stories! TriciaSent from my iPadOn Mar 10, 2011, at 8:25 PM, "" <elizabethrgonzalez@...> wrote:

Hello . . .

I want to thank both of you for your beautiful (and beautifully written) posts. You are among the long-time stellar members of this group whom I can always rely on for thoughtful insights and helpful information. I deeply appreciate your participation, not to mention your instructive personal stories.

Beth, after all you've been through in your search for a decent and reliable doctor, it sounds as if you've found yourself a couple of winners. It's always heartwarming to read about caring, involved, and scrupulous docs like these.

I get the impression that your revision surgeon had not had tons of flatback revision experience per se at the time he embarked on your big operation. But he was so open-minded and willing to learn from all available sources (including hits that came up on Internet searches) that he was able to apply all his previous years of experience and expertise to your case while performing the state-of-the-art procedure you neeed. It sounds as if he did very well by you.

In fact, you've actually made me question my standard advice: "Find a surgeon with lots of specific experience in flatback revision!" Something tells me that the surgeons who are still inducing flatback syndrome in their patients may be plenty experienced; it's just that they closed the book years ago and decided they had no need for continuing medical education.

Personally, I find it sobering -- or maybe the word I am seeking is overwhelming -- to realize how easily a surgeon can go astray in correcting a flatback deformity. For instance, until I heard about this, I almost would not have believed how crucial one seemingly small consideration becomes when you're ready to osteotomize and re-fuse: the patient's position on the operating table. It seems that "what you see is what you'll get" in terms of the actual outcomeAs I've mentioned before, my first revision surgeon -- a punctilious person if ever there was one; just this side of OCD --took a long, last-minute look at my own positioning and decided it was just not optimal; he actually broke scrub to reposition my body a few millimeters.

I know just what kind of frustration, depression, even desperation you must have felt during those years you spent searching for an informed and competent doctor. Thankfully that hell you went through was not in vain. You just can't be too careful --you have to hold out for someone qualified, which all too many surgeons today still aren't, sad to say. As for pain management professionals, bona fide and otherwise: Don't even get me started!

Do you remember one woman who wrote to us several years ago that she had spent ten (10) years trying to find an appropriate spine specialist? I wish I could remember which Feisty member that was. She had seen doctors in multiple states, too, as her family moved around country.

Ten years! -- a whole decade of visiting one bozo after another, only to be told "Beautiful fusion!" "No basis for this pain you're reporting!"" "Have you considered seeing a psychiatrist, dear?" It's enough to give you a very severe anger management problem, if not drive you to drink (or suicide). I am moved by the persistence and determination, the patience and endurance, the profound and massive courage of our intrepid Feisty survivors.

With gratitude to both of you two "pillars of the Feisty Forum,"

> > >

> > > 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

> > >

> > >

> > >

> > >

> > >

> >

>

[Guest guest]

Thank you everyone for always sharing. This summer will be almost 2 years post

op. I still cannot believe I am pain free. In reading today's posts, I am

reminded of the numerous visits to orthopedic specialists because of pain in my

knees... walking up stairs, ect. All xrays showed everything was normal. I was

checked for lupus and every other kind of illness... all negative. I was given

steroids injections many times... and they were of no help. After all of those

YEARS of searching for a reason why my knees hurt... it ended up, because of my

flatback, the only way I looked liked I was standing straight, was because I had

been walking with bent knees for the last 10 years... Now, my knees do not hurt

and I stand straight. The thing about specialists.... is they only look at one

area... but everything in our body is connected. I just wish these " specialists "

would look at the big picture. It would save us all many years in our search for

" why am I in pain " . Love to everyone!

Peri