Re: Hi, new poster here...

February 18, 2004

Dianne,

Welcome to the group. You'll find all of us here can relate to your aches, pains

& feelings in some way.

My question to you is-- were the doctors you saw orthopedics? If they were or

weren't I'd still get a third opinion. Like you I find that after I've been laid

up sick for even a day I walk hunched over for awhile. Just getting up is a

challenge.

Joyce-Atlanta

February 18, 2004

Hi Joyce,

Thanks so much for the welcome. In answer to your question, yes, they were

both orthopedic surgeons. The second doc was actually an intern working with my

surgeon back in '78 when I'd had the Harrington Rod surgery. Unfortunately, my

original surgeon retired a few years ago. Also of some note, because I

hadn't been to his office in a number of years, they destroyed my records. Is

that

the norm? I mean geez, turns out it's kind of important that I have those now!

Maybe the hospital where the surgery was done still has the x-rays. Have you

run into this kind of issue as well? From what I've read, and I know I need

to read a lot more, but isn't it important to compare the x-rays?

February 18, 2004

Dianne, it was so good to hear from you. I know that many people will empathize

with your story.

I don't usually give out advice here, but I want to urge you to find some way,

if you possibly can, to get your x-rays to Rand in Boston and chat with

him about your condition. You have been dealing with MDs who just are not up to

speed and are compensating for ignorance with arrogance and/or dispensing

counterproductive misinformation to you.

I think you know what is ailing you and what the proposed solution will be once

you get to a qualified specialist with a long track record in dealing

successfully with flatback. I think one consultation with someone of Rand's

expertise and experience might change your whole outlook and give you hope for a

new and better life.

In any case, welcome to the group, and please keep posting!

Best,

(group founder/moderator, etc.)

Hi, new poster here...

Hello everyone,

What a mix of emotions its been reading the posts on this

website. I must have found this site a few months ago, it was in

my " favorites " list, but I guess I didn't have the stamina to sit at

the computer for longer than a few minutes at that time. I'm taking

a break from reading now to just introduce myself.

I live in Rhode Island, am 44 years old and had Harrington Rod

surgery in 1978. I'd worn a Milwalkee brace from the age of twelve

until, in an act of teenage rebellion, I stashed it under the eaves

in the attic at the age of fifteen. Needless to say, correction of

my scoliosis was not obtained and at eighteen I was outfitted with

the latest in Rod 'n' Fusion. Harrington, that is.

My spine was fused from mid shoulder blade height to the second

to the last disc.(As you may have guessed, I'm not well-versed in

medical jargonese) I was told by my current doctor that the last

disc was probably left unfused for increased mobility. Is this

important or relevent to what I'm experiencing now? I don't know. I

do know that after surgery I led a relatively normal and active life

for a good twenty-four years. By all accounts it was a good surgury

with excellent correction.

In the past year I've gone completely downhill. It was with

increasing difficulty that I could stand straight after sitting more

than an hour or two. I was in school at this time last year, and

would sit in back so I could do a yoga stretch before attempting to

walk because

it was getting that difficult to straighten up completely. In July,

I could

barely straighten up after being bedridden with the flu for a few

days, and the pain was incredible. I didn't know what to think and

the soonest appointment I could get with an Orthopedist was three

months. My back deteriorated even more after a hysterectomy in

August and I could barely hobble from bed to sofa for a good three

months, at least. My lower back felt like mush, my

upper back felt achey and odd. When I was finally seen in October, I

was chidingly informed by the doctor that " The Big Guy Upstairs

never intended for spines to be fused, " . What does one do with that

kind of medical advice? When I asked about Flatback, a

condition I'd only just read about on the internet, he didn't seem

to know what I was talking about and reitterated the " Big Guy "

thing, that and that my one unfused disc was giving out from

carrying the weight of the fusion all these years. I was given a

script for physical therapy. No follow-up, just carry on. I went to

a new doctor; same analysis, less condescension. Again, the

concerns about Flatback were raised.

A discussion ensued debating whether flatback results at time of

surgery or over time. His position; that I'm just now becoming more

syptomatic, less able to compensate for the loss of lordosis that

happened at surgery. He dismissed completely the idea that my back

could be straightening out gradually. At that point, it seemed a

moot point, after all, what difference did it make how it happened,

and maybe I'd misunderstood some of the things I'd read.

I've followed the course of physical therapy, and have gained back

a good deal of mobility, more than I thought possible, actually. But

my stamina feels shot and my back and hips, though less acutely

painful, feel locked and stiff. And my concerns still lie with what

my next step should be. Do I risk increased complications by

putting off a complete spinal fusion and correction of the loss of

lordosis? Are the pains in my hips a warning sign of something?

Should I be alarmed that my doctor isn't asking me any questions

about the pain in my hips or stiffness in my entire pelvic girdle?

And there's other things... Most people can't believe a seemingly

fit person could deteriorate so quickly and remain so for this

long. I dread answering questions now, it seems so involved and I

end up feeling worse afterwards, like I'm trying to explain why I'm

not myself, but then I get this sick feeling that this is what my

new self might be! It's like this is all I am now. I can't work yet,

I can't do the things I normally used to do, and I've already made

this post so unbelievable long!

I'm so sorry for the long-windedness. I think I really needed to

unload and get some feedback from people that have a similar frame

of reference. Then my fingers got away from me! I'll end here by

thanking you for posting your own experiences. It's scary, but good

and I hope to find answers and new questions to guide me and hope

that I can help others, as well. Dianne

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

February 19, 2004

Dianne,

Unfortunately my surgery records were also destroyed due to the long length of

time. I had surgery in 1969 & 1971. Had last seen that doc in 1980 but never

thought to ask for a copy of the records or x-rays. Oh, well.

Joyce

February 19, 2004

Hi Dianne,

For me, the doctor's records and x-ray films had been destroyed, but

the hospital records had not. But they had been sent to an off-site

medical record archive company, and it took them a few weeks to

access them. I contacted the hospital directly to get them and had

to pay a lot of money for the copying fees because it was a thick

file which contained a lot of scribbled charts and notes that are

practically unreadable and probably of no value now. (Like how my

appetite was and how much urine I put out 27 years ago!) I found the

operative report and the written x-ray reports made for pretty

interesting reading, though.

I get the impression that the docs don't really need the old x-rays.

They can see what needs to be done by taking current x-rays.

Good luck to you,

loriann

> Hi Joyce,

>

> Thanks so much for the welcome. In answer to your question, yes,

they were

> both orthopedic surgeons. The second doc was actually an intern

working with my

> surgeon back in '78 when I'd had the Harrington Rod surgery.

Unfortunately, my

> original surgeon retired a few years ago. Also of some note,

because I

> hadn't been to his office in a number of years, they destroyed my

records. Is that

> the norm? I mean geez, turns out it's kind of important that I have

those now!

> Maybe the hospital where the surgery was done still has the x-

rays. Have you

> run into this kind of issue as well? From what I've read, and I

know I need

> to read a lot more, but isn't it important to compare the x-rays?

>

February 19, 2004

Of course old x-rays are important, but they take up a lot of space, so they

tend to keep them even less time than records. I guess each state has laws

regarding how long medical records & images have to be kept, and if they

happened to be made before the laws allowing patients to take them, well, too

bad, I guess.

I've learned my lesson, and will always make a point to obtain important

records, x-rays, and other images for future reference.

Re: Hi, new poster here...

Hi Joyce,

Thanks so much for the welcome. In answer to your question, yes, they were

both orthopedic surgeons. The second doc was actually an intern working with

my

surgeon back in '78 when I'd had the Harrington Rod surgery. Unfortunately, my

original surgeon retired a few years ago. Also of some note, because I

hadn't been to his office in a number of years, they destroyed my records. Is

that

the norm? I mean geez, turns out it's kind of important that I have those now!

Maybe the hospital where the surgery was done still has the x-rays. Have you

run into this kind of issue as well? From what I've read, and I know I need

to read a lot more, but isn't it important to compare the x-rays?

February 19, 2004

Welcome Dianne,

We are a real mixed-bag of feisty folks here on this site...some of us have had

one to multiple surgeries, some are in the process of entering new phases of

surgery, some are recuperating, you get the picture. But no matter where we are

in our various forms of treatment, we are great listeners (readers), we, more

often than not, offer advice, BASED ON OUR OWN INDIVIDUAL CASES, and above all,

WE CARE ABOUT EACH OTHER!! We hurt for each other, we rejoice in each other's

triumphs, we cry on each other's shoulders, and we have a lot of

laughs...sometimes at each other's crazy mishaps as crooked folk! You have found

a unique group of compassionate that I, personally, feel closer to than some

friends I actually see face to face.

There are some extremely knowledgable (medically, legally, etc) people who

contribute to this site. I hope you find some of the answeres you're searching

for; from reading your story, it sounds to me like you have seen 2 doctors who

know very little (if anything at all, actually!) about Flatback Syndrome

(HARMS). If your insurance will cover it, might I suggest you try to schedule

yet another opinion! I'd personally like to choke the life out of the so-called

" doctor " who make the crack about " You-Know-Who not meaning for spines to be

fused " ...my, my, what a genuis of a physician HE is!! I wonder how many years of

medical school he had to attend before he figured THAT one out!! Please, tell

that man to sign up for a shot on Comic Search...but to please stop practicing

Orthopedic medicine!! We're all perfectly aware of that fact; his job was to

guide you not amuse you. I'm sure you're not much up for laughs at this point in

your life; you want to find out WHY? you're not functioning at the same level

you were up until a few years ago.

There's a wonderful introducton and guid on Flatback available on the internet;

I've given it to several physicians who have treated me over the past few years

as well as to the Disability attorney (who was finally able to convince the

morons at Social Security Disability that I really was disabeled, not just some

bored, former hospital employee who now wanted to give up a perfectly wonderful

career and sit at home to eat Bon-Bons...WHOA! I just went off on one of my

tangents again...sorry!)Back on point... The article by Mina is one of

the best, most comprehensive, informative, and understandable around. As you

navigate the road ahead, you will find that the more you educate yourself on

this subject, the more seriously the Orthopedic community will take you. You can

access the article at:

www.users.nac.net/mins/flatback.html

Keep us posted on your progress...and welcome to the group! Don't give up and

don't feel isolated...we're always out here to listen!

All the best,

Beth

Harrington rod/fusion T10-L4 1970; revision surgery (for Flatback syndrome) T10

to sacrum June 2000

February 19, 2004

Dianne,

Most revision surgeons prefer to have the original x-rays to compare but sagital

imbalance can be determined without comparison films. Some places put old

records on micro-film for storage. But this an excellent example of why it's so

important to get copies of your x-rays and keep them at home. Some places charge

a fee to copy films, but it's well worth it. I take post-revision AP and Lateral

films (1 each) with me whenever I travel; our x-rays speak for themselves and

having them with me has saved me a lot of explaining to out-of-town docs!

All the best,

Beth

February 21, 2004

Mina is an incredible pioneer whose articles were a tremendous help to

us all in the early days.

Do remember that her writing was more or less the " beginning " and does contains

a few inaccuracies as well as some outdated information.

I have to agree with you that some of us here have tremendous medical and legal

knowledge and/or like to pose as gigantic know-it-alls.

Well, I would continue writing one of my famously lengthy posts, but I need to

try and get a haircut this afternoon and am not sure where I put my diamond

necklaces . . . .

Re: Hi, new poster here...

Welcome Dianne,

We are a real mixed-bag of feisty folks here on this site...some of us have

had one to multiple surgeries, some are in the process of entering new phases of