Something to think about

August 2, 2010

to Carla

I do not consider myself different and never have. I have two steel rods however many other have replacement hips, knees and other body parts fixed--are they different or un- normal.

I have had my rods so long that they have become part of me and my daily activites. My husband tells more people than me about the rods. My worse thing is going to a doctor for a sore throat or a sore finger and the subject always turns to the scoliosis and what I came there for gets forgotten.

We are normal just have a few extra pieces of equipment.

One thing you might try and my surgeon told me this many years ago. Put a book on your head and walk around with it there in your house. I walk staight up and down no bends and I did this off and on for a year just after surgery. You have to keeptright to balance the book. It seems funny but heh it is worth the try

From: Beth <bethann0917>Subject: Something to think aboutFeistyScolioFlatbac kers@groups .comReceived: Tuesday, July 20, 2010, 2:21 AM

Jeanne brought up an interesting point in her reply to ...why ARE there some scoliosis patients, who had the typical Harrington rod procedure of the 60's and 70's, who experience no problems later in life? I'm assuming that the fusion and rod insertion surgical procedures were basically similar from hospital to hospital, surgeon to surgeon. So why do some of us develop Flatback Syndrome while others do not?I had never really given it much thought before I read 's post but now I can't STOP trying to figure out the WHY?? Here I go again, harping on my favorite theme that the only stupid questions are the ones not asked!! So here's a question for the group: How many with thoracic ONLY (anywhere from T1 through T12) rod/s and fusions have developed Flatback Syndrome? How many with thoraco-lumbar fusions (T10 through L5)? How many with

lumbar ONLY (T12 through L5) fusions? I fit into the thoraco-lumbar group; my original fusion in 1970 was T11 through L4. As I've mentioned in other posts, I herniated L5 in 1985, either during my pregnancy or while trying for a vaginal delivery. The symptoms of Flatback ( first, pain in lower back and left leg; then difficulty standing up straight) did not become evident to me until 1995. Until then, I had a pretty normal life...happily married with 2 children (older son is my "bonus son"; all the joy of being a co- Mom without the pain!!), worked full time, did all the PTA & sports stuff with my boys...a full and wonderful life. Then WHAM!!! I got knocked on my tush by something called Flatback related to a surgical procedure I usually forgot I'd ever had!!! Talk about not fair!!??The surgeon who performed my revision procedures told me that my Flatback was due to the fact that Harrington rods are distraction rods (I always called

it my internal car jack!) and that the old methods flattened the spine out. Back then, apparently no thought was given to the fact that, in my case, they "flattened out" any normal lordosis. I had never wondered 'why?' I didn't look like other women in jeans with a shirt tucked in. I wore scrubs at work for over 25 years, was never much of a clothes-horse, HATE shopping, and have 2 boys and a husband! Our idea of a perfect family outing is going to dirt track stock car races on Sat.nite and eat hot dogs covered in dirt!! Who had the time or the inclination to pay attention to things like whether my neighbor looked better in a pair of Calvin Klines?? I wore Levi's!!I'd love to hear from others as to what levels their original fusions were; those with and without symptoms of Flatback Syndrome. How much about this deformity is mechanical? Was there a difference in the surgical procedures or length of time in casts/braces post-op? I'm

really curious now!All the best,Beth

August 2, 2010

Diane,

The reason I think I am different is

because I look different to people. I am pitched forward and have a different

gait than anyone. But, most of the time I do not even think about it, because,

like you, I do what I want and go about my daily activities with no problems.

I don’t think the book would stay on my head, but I’ll try it!! I do my dog

agility, play guitar with friends, and lead a pretty normal life. My biggest

problem now is to lose some weight! Thanks for answering my post. I

appreciate it!

Carla

From:

[mailto: ] On Behalf Of Durand

Sent: Monday, August 02, 2010 3:52

PM

To:

Subject: Re:

Something to think about

to Carla

I do not consider myself different and never

have. I have two steel rods however many other have replacement hips,

knees and other body parts fixed--are they different or un- normal.

I have had my rods so long that they have become

part of me and my daily activites. My husband tells more people than me

about the rods. My worse thing is going to a doctor for a sore throat

or a sore finger and the subject always turns to the scoliosis and what I

came there for gets forgotten.

We are normal just have a few extra pieces of

equipment.

One thing you might try and my surgeon told me this

many years ago. Put a book on your head and walk around with it there

in your house. I walk staight up and down no bends and I did this off

and on for a year just after surgery. You have to keeptright to balance

the book. It seems funny but heh it is worth the try

From: Beth <bethann0917>

Subject: Something to think about

FeistyScolioFlatbac kers@groups .com

Received: Tuesday, July 20, 2010, 2:21 AM

Jeanne brought up an interesting point in her

reply to ...why ARE there some scoliosis patients, who had the

typical Harrington rod procedure of the 60's and 70's, who experience no

problems later in life? I'm assuming that the fusion and rod insertion

surgical procedures were basically similar from hospital to

hospital, surgeon to surgeon. So why do some of us develop Flatback

Syndrome while others do not?

I had never really given it much thought before I read 's post but

now I can't STOP trying to figure out the WHY?? Here I go again, harping

on my favorite theme that the only stupid questions are the ones not

asked!! So here's a question for the group: How many with thoracic ONLY

(anywhere from T1 through T12) rod/s and fusions have developed Flatback

Syndrome? How many with thoraco-lumbar fusions (T10 through L5)? How many

with lumbar ONLY (T12 through L5) fusions?

I fit into the thoraco-lumbar group; my original fusion in 1970 was T11

through L4. As I've mentioned in other posts, I herniated L5 in 1985,

either during my pregnancy or while trying for a vaginal delivery. The

symptoms of Flatback ( first, pain in lower back and left leg; then

difficulty standing up straight) did not become evident to me until 1995.

Until then, I had a pretty normal life...happily married with 2 children

(older son is my " bonus son " ; all the joy of being a co- Mom

without the pain!!), worked full time, did all the PTA & sports stuff

with my boys...a full and wonderful life. Then WHAM!!! I got knocked on

my tush by something called Flatback related to a surgical procedure I

usually forgot I'd ever had!!! Talk about not fair!!??

The surgeon who performed my revision procedures told me that my Flatback

was due to the fact that Harrington rods are distraction rods (I always

called it my internal car jack!) and that the old methods flattened the

spine out. Back then, apparently no thought was given to the fact that,

in my case, they " flattened out " any normal lordosis. I had

never wondered 'why?' I didn't look like other women in jeans with a

shirt tucked in. I wore scrubs at work for over 25 years, was never

much of a clothes-horse, HATE shopping, and have 2 boys and a husband!

Our idea of a perfect family outing is going to dirt track stock car

races on Sat.nite and eat hot dogs covered in dirt!! Who had the time or

the inclination to pay attention to things like whether my neighbor

looked better in a pair of Calvin Klines?? I wore Levi's!!

I'd love to hear from others as to what levels their original fusions

were; those with and without symptoms of Flatback Syndrome. How much

about this deformity is mechanical? Was there a difference in the

surgical procedures or length of time in casts/braces post-op? I'm

really curious now!

All the best,

Beth

August 2, 2010

a,

I don’t know how my discs are doing. I

can only think that they are OK because I don’t have any pain. I wish I was

more technically proficient on explaining my surgery and where I’m fused, but I

just don’t know/remember. Since it was done in 1981, I don’t know if my

medical records are still available. I do “look” different than most people

because I’m pitched forward, but I am able to go about my daily activities with

minimal problems. I get uncomfortable if I have to stand for a long time, but

I can walk, sit, and lay down without any discomfort. My dogs keep me active

and busy! I sure do love them both.

Carla

From:

[mailto: ] On Behalf Of erica rasmussen

Sent: Sunday, August 01, 2010

10:47 PM

To:

Subject: Re:

Something to think about

Hi Carla,

You said that you haven't had too many problems with your back, which is great

to hear. I'm just wondering how are your discs doing?

Are they compressed together in the lumbar spine? I'm just curious if this is

the process that usually occurs in the lumbar spine. I'm wondering if some

people with compressed vertebrae may not have as many problems that others

have.

thanks

erica

From: Carla Blenk

Sent: Wed, July 21, 2010 12:38:10

PM

Subject: RE:

Something to think about

Hello, group. I have posted once or twice before, but I tend

to just lurk because like Diane, I am not having any real problems,

either. I had Harrington Rods implanted in 1981 at the age of 24 (I will

be 53 next week). I developed scoliosis at about 11 years old, wore a Milwaukee brace all

through school, and started having a lot of back pain in my late teens, early

20s. My local orthopedic doctor referred me to Dr. Carl Fackler in Atlanta , and he did the

surgery. I had fusion the first time using a floating rib and scrapings

from my left hip. The next week, the rods were implanted. I’m sorry

to say I don’t know the positions technically, but the rods go the length of my

spine. The “natural curve” you are supposed to have at the base of the

spine was made straight; therefore, I am “pitched forward” a bit. From

the front, you cannot tell I have anything wrong. I don’t know if I

indeed have flatback, but I know I look different than most people. I

have gotten a tough skin about it and just go on as if nothing is wrong.

I live a pretty full life. I have not had children, but have

been married twice (currently divorced but in a relationship) , have two great

dogs and compete in dog agility, and work full-time as a systems analyst.

I used to exercise regularly walking and lifting weights, but I have gotten

slack lately and have put on a few pounds L The extra weight

causes me more health problems than my back does!

So I am very interested in why some people have problems and some

don’t. I often wonder if I will eventually have problems. You all

are very strong and courageous for all you have gone through. So far, my

experience of pain and suffering has been in my teens and twenties. The

stigma of not being “normal” is tough and it plays havoc on your

self-esteem. I have struggled with that. In my later years, I have

come not to care so much what people think! But the only time I really

have pain now is if I overdo things, especially bending. I don’t wash my

car or do heavy housework or yard work that causes me to bend over a lot.

Otherwise, I carry out my day-to-day activities with no pain or problems.

My aunt is a physician with a specialty in occupational medicine,

and we have discussed this quite a bit. She feels that because I had my

rods implanted as a young adult rather than as a child or teen, it may have

been to my advantage. At the age of 24, I was physically mature and no

further growth took place to “move” the rods in any way. Just a thought,

which may or may not be worth thinking about.

From: FeistyScolioFlatbac kers@groups .com [mailto:

FeistyScolioFlatbac kers@groups .com ] On

Behalf Of Durand

Sent: Tuesday, July 20, 2010 10:11

PM

FeistyScolioFlatbac

kers@groups .com

Subject: Re:

Something to think about

I am not sure of

why there are problems. My two rods start at the neck line and run the full

length of my back until the bottom disc which is the only one with no

support. My one rod is screwed into the other and they have hooks on

them sitting on the discs. They are stainless steel and have been there

since 1966. My back is permanetly straight. I have two grown

children and 4 grandchildren. I was an administrative secretary for 37

years and dressed up everyday including my favorite steleto shoes. My

husband thinks I am nuts having so many pairs of shoes. I worked 25 of

those 37 in a bookstore so I was on my feet alot. I do not have

flatback, I have very little pain except when it is going to rain and I can

tell you. I live a very fulfilling life.

From: Beth <bethann0917>

Subject: Something to think about

FeistyScolioFlatbac kers@groups .com

Received: Tuesday, July 20, 2010, 2:21 AM

Jeanne

brought up an interesting point in her reply to ...why ARE there some

scoliosis patients, who had the typical Harrington rod procedure of the

60's and 70's, who experience no problems later in life? I'm assuming that

the fusion and rod insertion surgical procedures were basically

similar from hospital to hospital, surgeon to surgeon. So why do some of us

develop Flatback Syndrome while others do not?

I had never really given it much thought before I read 's post but now

I can't STOP trying to figure out the WHY?? Here I go again, harping on my

favorite theme that the only stupid questions are the ones not asked!! So

here's a question for the group: How many with thoracic ONLY (anywhere from

T1 through T12) rod/s and fusions have developed Flatback Syndrome? How

many with thoraco-lumbar fusions (T10 through L5)? How many with lumbar

ONLY (T12 through L5) fusions?