Re: Greetings and an introduction

February 11, 2001

In a message dated 2/11/01 9:57:04 PM Eastern Standard Time,

tisoncik@... writes:

> tisoncik@...

It does sound like you have flat back and that can be fixed...And the

Government will pay for it if you cannot. You should start a search on good

Scoli doctors..And get yourself on your feet again..

February 11, 2001

Hi ...

Welcome to the group.

Although it's possible that you have flatback, it's not very probable.

Fusion of thoracic vertebrae cannot technically cause flatback. It's

more likely that you have a lot of degeneration below your fusion area.

I hope you find some way to get treatment.

Regards,

February 11, 2001

Welcome, !

Hey, I've gone to many doctors who just threw up their hands because I had

degenerative disc disease, and a small scoliosis curve under my previous

fusions in 1966 and 77.

They basically sent me to " alternative " treatments, for my pain, mostly. I

tried 2 osteopaths, massage therapy, 2 chiropractors, acupuncture, nothing

really worked for the pain except a combination massage therapy AND

accupressure.

I was finally in so much pain, and beginning to bend over, that I began

searching for help on the Internet.

Then I found this list, and saw there was something to be done.

Although due to my present post-operative complication (one of the screws

keeps sliding in and out of the bone) and I wish I had not had the

scoliosis fusion and hardware installed, I am glad I had the discs removed

and fused, since they were pressing on my nerves and causing pain. You

might check to see if this is why you aren't straight.

Keep searching for a good doctor, don't give up hope!

in the East Bay

At 05:35 PM 02/11/2001 -0500, you wrote:

>Hello, from a new subscriber.

>

>I had a Harrington Rod fusion in 1970 at Presbyterian-St. Lukes in Chicago,

>at the age of 13. I alas don't know the exact vertebrae fused, as many of you

>seem to, looking over the archives-- just that it was most, or possibly

>all, of

>my thoracic vertebrae, and that the curve I had was 73 degrees and they

>made it

>into 35 degrees.

>

>Until 1995 I had relatively few problems with my back, other than alot of

>acute

>back injuries, despite a fairly rugged life history (I'm also autistic, though

>this was misdiagnosed (as it usually was in my generation) as " childhood

>schizophrenia " . I spent a lot of time homeless when I wasn't locked up,

>and the

>few jobs I did manage to get were the unskilled heavy physical labor sort that

>caused an orthopedist evaluating me for social security to visibly cringe when

>I told him about them).

>

>In 1995 I began to experience low back pain and numbness in my legs when

>upright. Over the years, it's gotten worse. I went from hiking up about a 2000

>foot climb from my doorstep to the top of a nearby mountain several times a

>week just for fun, to no longer able to hike or walk any significant distance,

>to no longer able to shop anywhere they didn't have those nifty electric

>ride-em

>carts (my horizons are about to expand here, only because I'm about to get my

>own nifty wheels... amazing how getting a wheelchair can look so very much

>like

> " freedom! " ) to, as of December, no longer able to stand and wash dishes, or

>even walk from one end of my very very small apartment to the other without

>pain. The few doctors I've seen about it over the years shrugged and said

> " arthritis " and/or " degenerating spine " , and told me I needed to learn to live

>with it.

>

>Last night I did a web search on scoliosis. I had last done one a couple of

>years before and hadn't found anything other than information for parents of

>kids with scoliosis. This time I was surprised to see information about post

>surgical adults pop up. From what I've read I'm utterly certain that what I

>have is " flat back syndrome " . I even lean forward pretty spectacularly and

>can't stand up straight even if I want to, though I can fake it somewhat by

>bending my knees.

>

>(This would not be the first time I've found my own diagnosis. I stumbled by

>accident onto information about high functioning autism, recognized it as

>exactly me, and found an autism expert, who confirmed it.)

>

>My current " general practioner " (actually a nurse practitioner at the

>city-owned clinic) is (obviously) no back expert, but she's someone who

>listens and does not get insulted if a patient brings her information. Last

>night and today I've been seeking out information to bring her. From what

>I can

>tell I can't actually get a revision surgery (at least not from anyone who

>knows how to do them) because I live in a rural state, there are no

>medicaid-covered doctors here with experience at that, and I suspect that no

>surgery is better than bad surgery. However it ought to be be possible to at

>least do something better than shrug and tell me to live with it.

>

>So, that's why I'm here.

>

>--

> A. Tisoncik

>tisoncik@...

>

February 11, 2001

> Hi ...

>

> Welcome to the group.

Thank you

> Although it's possible that you have flatback, it's not very

> probable.

> Fusion of thoracic vertebrae cannot technically cause flatback.

That's assuming that that's all that was fused, and/or that what I was

told about it was at all accurate.

Unfortunately I've rarely been told much of anything by doctors, and

most of the medical care I've gotten has been poor to borderline

criminal. For example, the doctor who diagnosed a degenerating spine

did so in about five minutes, without medical records or x-rays, and

sent me on my way.

Usually the only way I've gotten any sort of passable medical care has

been to research the subject, figure out the possibilities myself,

then keep at it until I found someone willing to look at things. Until

yesterday I didn't have any information at all about what happened to

adults with fusions. Now I've got somewhere to start with all of

this.

I do know the nurse practitioner has been willing to go to great

lengths to try to pry services and specialists out of medicaid. So

while I'm not expecting the world, I figure I might at least get some

physical therapy and pain management.

--

A. Tisoncik

tisoncik@...

February 12, 2001

Hi ,

Whether you want to call it " flatback " or not--being fused all the way

down can cause major problems later in life. The lengthy fusion gives

you a " totally ramrod straight, flat back " causes much wear and tear

above and below the fusions, musculature problems and much, much, more.

The lordosis and balance is often out of whack and over the years you

try to compensate for all of this which leads to other problems (ie

knees, neck, etc.) Seek help and advice while you can and make sure you

have a bone density test done soon.

Good luck,

Diane Popiuk (1967 Harrington Rod Fusion)

tisoncik@... wrote:

>

> > Hi ...

> >

> > Welcome to the group.

>

> Thank you

> > Although it's possible that you have flatback, it's not very

> > probable.

> > Fusion of thoracic vertebrae cannot technically cause flatback.

>

> That's assuming that that's all that was fused, and/or that what I was

> told about it was at all accurate.

>

> Unfortunately I've rarely been told much of anything by doctors, and

> most of the medical care I've gotten has been poor to borderline

> criminal. For example, the doctor who diagnosed a degenerating spine

> did so in about five minutes, without medical records or x-rays, and

> sent me on my way.

>

> Usually the only way I've gotten any sort of passable medical care has

> been to research the subject, figure out the possibilities myself,

> then keep at it until I found someone willing to look at things. Until

> yesterday I didn't have any information at all about what happened to

> adults with fusions. Now I've got somewhere to start with all of

> this.

>

> I do know the nurse practitioner has been willing to go to great

> lengths to try to pry services and specialists out of medicaid. So

> while I'm not expecting the world, I figure I might at least get some

> physical therapy and pain management.

>

> --

> A. Tisoncik

> tisoncik@...

>

February 12, 2001

Lexi,

I wanted to *applaud* you for being 79 yrs. *young* and keeping so

active & in touch via the internet. That is wonderful! Welcome to the list.

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

In a message dated 02/12/2001 2:40:58 PM Pacific Standard Time,

lexi@... writes:

> I am new to this list, 79 years old and only 5 years ago a Dr told me I was

> born with scoliosis. I have suffered with Ra for years and now have 5

> degenerated dics and neuropathy

February 12, 2001

> Hi ,

> I have a daughter with scoliosis and an autistic son. Small world.

Possibly not *too* small. There's as far as I know no research on

this, but there might be some correlation between autism (or,

actually, dyspraxia, which occurs a lot in autism) and scoliosis. The

subject has come up in discussions among ourselves (in fact it was

one of the first questions someone asked the first time I went to a

gathering of autistic adults: " does anyone else here have

scoliosis? " ) and an occupational therapist I met says she sees it a

lot in autistic kids who have poor muscle tone. I know I had my

scoliosis start a lot earlier than usual-- I have pictures of me at

eight with an obvious dropped shoulder, though my parents didn't take

me to a doctor about it until a neighbor who saw me in a swimsuit at

the age of 12 made a very big fuss about it.

There are a lot of things in autism having to do with movement, motor

skills, and neurology that are mostly ignored by autism experts. My

guess is that because autism was considered a " mental illness " for so

long, psychiatrists and psychologists dominate the field, and they're

obsessed with " behavior " , not whether we can move or why we can't

sleep or if we're in pain. They have their priorities upside down.

> Boone 3 (autistic, hyperlexic)

Hyperlexia is cool. I think it's unfortunate they found a way to turn

that difference into a " disorder " .

Comparing autism and scoliosis: autism affects my external life a lot

more than scoliosis, but it rarely really *feels* like a disability,

it feels like who I am. 90% of my autism-related problems aren't

really problems by themselves-- they're problems with trying to live

in a world designed for neurotypical people, or problems with

outright prejudice and discrimination. Plus, there are a lot of very

positive things about autism. If there was a Planet Autism I could

live on, most of my autism problems would disappear.

Scoliosis on the other hand is *much* easier as far as fitting it

into the world, but it feels like a genuine disability-- like it's

*keeping me* from being who I am. Even if I could magically be

transported to Planet Scoliosis, scoliosis would still be no fun at

all.

--

A. Tisoncik

(who was also a 3 year old eager reader but no conversationalist)

tisoncik@...

February 12, 2001

welcome

i have scoliosis (from 60 degree curve corrected to 35 degrees). my son has

high functioning autism. i belong to a support list for those w/ HFA &

aspergers (adults & families). if you are interested, I can send you the

URL. there are several adults w/ similiar backgrounds as your's. anyway,

my surgery is in my upper back (harrington rod), & was 18 1/2 years ago

when i was 15 (boy, that sounds so long ago), about 7 years ago, i was

found to have a cracked vertebrae in my lower back, doc says it's a

congenital defect. my lower back bothers me a lot more than my upper.

welcome!

TBTG!

~beth, mum to shane & grace

angelus@...

" all children have gifts, some just open them later than others. "

February 12, 2001

I have the first book Eat Right For Your Blood Type and just bought the

second Live Right For Your Blood Type. In this book they give you a place

to send for a test. They have recently found out new information for these

blood types. Some are secreters and some are non secreters. I sent for the

test but it hasn't come in the mail yet.

I am new to this list, 79 years old and only 5 years ago a Dr told me I was

born with scoliosis. I have suffered with Ra for years and now have 5

degenerated dics and neuropathy. I have to drive 100 miles to go to a Dr.

for my back. Usually get someone to take me.

I live alone in a house I have lived for 54 years and have a small garden.

My husbamnd has been dead for 26 years. I have 7 kids all in different towns

and states. But most of us are on email. Lexi

From: Gen@...

Reply-Scoliosis Treatment

Date: Mon, 12 Feb 2001 13:30:15 EST

Scoliosis Treatment

Subject: Fwd: Greetings and an introduction

One thing I am doing is following the blood type diet described in Dr.

> D'Adamos books, the main one being " Eat Right For Your Type. "

>

February 12, 2001

Please send the url as I have a grandaughter with aspergers and scoliosis.

Does this run in families? Lexi

From: " Beth Slater " <angelus@...>

Reply-Scoliosis Treatment

Date: Mon, 12 Feb 2001 14:08:54 -0600

Subject: Re: Greetings and an introduction