Re: Help needed - late1960's scoliosis fusion patient

July 18, 2003

Joan, there is a revision surgeon in our area (Bay Area) named Booth. I

went to one of his lectures and he is super knowledgeable. He specializes in

scoliosis revision surgeries for adults. Hope this helps a bit. Keep your head

up. Jess

There are two ways to live your life. One is as though there are no miracles.

The other is as though everything is a miracle.

Albert

Einstein

July 18, 2003

Hi Joan,

My story is very similar to yours except my surgery was done in 1966 ( I was

12, I'm now 49 ) by Dr. Harrington, using the Harrington Rods. I lived

a pain free life, had 2 children with no problems. By the time I was in my

30s I started having pain with prolonged sitting or standing and this

progressed over the years. by my late 40s I was in severe pain alot of the

time. I had developed HARMS, also known as flatback, but was not aware of it

and the scoliosis specialists ( the Drs that took Harringtons practice over

when he retired) that I was seeing was telling me everything was " O.k. " . I

was finally told in 2001 by those same Drs that I had severe flatback and

needed surgery as soon as possible. Well, by that time I had quit my full

time job where I carried my insurance because I was in such pain I was

unable to work, therefore losing my insurance. I am now in the beginning

stages of looking into disability. I am on very strong pain medicine just to

get me to a place that I have some quality of life.

I have now develped a THIRD curve at the very base of my spine and have

degenerative disk disease that has now resulted in all of disks, below where

I am fused,deteriorating. I have knee damage from walking and standing with

my knees bent (a result of the flatback) and wear braces on my knees. My

ankles stay swollen about 80% of the time. I have severe burning pain on the

left side of my back where one of the rods is connected. My ribs have

rotated so much that I have stomach and UI problems frequently. I am now

bent over at the waist so far I almost have to look up to see the eyes of my

11 yr. old grandson. And on top of all of this are the awful psycological

problems that come with chronic pain that you referred to in your posting.

I'm sorry, Joan, I don't usually go on like that. It's just that some days I

feel like the world is caving in on me, yet at the same time I know there

are people out there that have it a lot worse than I do.

I would love to talk with you about some of your experiences, etc. . If you

feel like it, email me at ddkrus@... or ddkrus54@.... and

thanks so much for giving me the chance to vent and please let me do the

same for you.

Sincerely,

sisdraper

Debbie

>From: " gingersnap124 " Reply-Scoliosis Treatment To:

>Scoliosis Treatment Subject: Help needed

>- late1960's scoliosis fusion patient Date: Fri, 18 Jul 2003 06:00:21 -0000

>

>Hello,

>

>I'm 49 years old and live in the San Francisco Bay Area. I'm looking for

>feedback, suggestions, help, and/or support. When I was 14 (1968) I had a

>T4 to L2 posterior non-instrumentated spinal fusion for scoliosis. In my

>20's to early 40's I managed all my back pain with a variety of exercises.

>In the last six years exercise has aggravated my back pain. Around age 36 I

>started having difficulty sitting for prolonged periods of time. That has

>only gotten worse with time, progressed to include standing, and I no

>longer get the relief I used to get with lying down.

>

>In the last 5 years, I've seen 4 spine surgeons. 3 of those doctors were

>pretty negative about any further fusion and preferred I use medication to

>deal with the pain. I have tried all types of pain medications with many

>negative side effects and limited pain relief.

>

>I desperately want to regain the ability to sit and stand for long periods

>of time. Pain medicine does not seem to be the answer. Because of the long

>length of time this has gone on, I have developed all the side effects you

>can get from chronic pain, i.e.; anxiety, depression, feelings of

>hopelessness, etc. I am fighting daily to hold on to my job that is 8

>hours, 3 days a week. But it is hell staying on my feet for 10 and a half

>hours.

>

>So, is there anyone out there who has or is going through similar

>circumstances? I know there must be others who had scoliosis fusions around

>the late 1960's. I wish I had posted a message sooner; before I became the

>mental mess I am now. I've always tried to solve my own problems but I

>really could use some support and suggestions. I'm terrified of being fused

>the rest of the way for it involves an anterior/posterior approach with all

>its complications and potential hazards. One doctor said I was too young to

>have it done at this point. It would put too much strain on my SI joints

>and my hips. I worry that I'm living needlessly in pain when surgery might

>help me regain my life vs. it leaving me without a job and in a much worse

>situation.

>

>Thanks for reading all of this.

>

>--Joan

>

_________________________________________________________________

Tired of spam? Get advanced junk mail protection with MSN 8.

http://join.msn.com/?page=features/junkmail

July 18, 2003

Joan,

I just read the posting from and let me say how very much I agree

with her on how important it is to get numerous opinions. I don't know if

you have checked into getting anymore opinions but there is some great info

on Drs. at www.srs.org and I have the names of some other sites if you're

interested.

thanks,

Debbie

>From: " gingersnap124 " <j_thomsen@...>

>Reply-Scoliosis Treatment

>Scoliosis Treatment

>Subject: Help needed - late1960's scoliosis fusion

>patient

>Date: Fri, 18 Jul 2003 06:00:21 -0000

>

>Hello,

>

>I'm 49 years old and live in the San Francisco Bay Area. I'm

>looking

>for feedback, suggestions, help, and/or support. When I was 14

>(1968) I had a T4 to L2 posterior non-instrumentated spinal fusion

>for scoliosis. In my 20's to early 40's I managed all my

>back pain

>with a variety of exercises. In the last six years exercise has

>aggravated my back pain. Around age 36 I started having difficulty

>sitting for prolonged periods of time. That has only gotten worse

>with time, progressed to include standing, and I no longer get the

>relief I used to get with lying down.

>

>In the last 5 years, I've seen 4 spine surgeons. 3 of those

>doctors

>were pretty negative about any further fusion and preferred I use

>medication to deal with the pain. I have tried

>all types of pain medications with many negative side effects and

>limited pain relief.

>

>I desperately want to regain the ability to sit and stand for long

>periods of time. Pain medicine does not seem to be the answer.

>Because of the long length of time this has gone on, I have developed

>all the side effects you can get from chronic pain, i.e.; anxiety,

>depression, feelings of hopelessness, etc. I am fighting daily to

>hold on to my job that is 8 hours, 3 days a week. But it is hell

>staying on my feet for 10 and a half hours.

>

>So, is there anyone out there who has or is going through similar

>circumstances? I know there must be others who had scoliosis fusions

>around the late 1960's. I wish I had posted a message sooner; before

>I became the mental mess I am now. I've always tried to solve my

>own

>problems but I really could use some support and suggestions.

>I'm

>terrified of being fused the rest of the way for it involves an

>anterior/posterior approach with all its complications and potential

>hazards. One doctor said I was too young to have it done at this

>point. It would put too much strain on my SI joints and my hips. I

>worry that I'm living needlessly in pain when surgery might help me

>regain my life vs. it leaving me without a job and in a much worse

>situation.

>

>Thanks for reading all of this.

>

>--Joan

>

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

July 19, 2003

In a message dated 7/18/2003 9:37:58 AM Eastern Daylight Time,

j_thomsen@... writes:

> I wish I had posted a message sooner; before

> I became the mental mess I am now. I've always tried to solve my

> own

> problems but I really could use some support and suggestions

Welcome to the group, you will find a wealth of information here. Not that I

would wish these problems on anyone, but it is helpful to know that you are

not alone in the world.

Gin (TN)

July 19, 2003

Hi Joan,

I had anterior/posterior fusion surgery L1 to S1 in 2000. It was my

first scoliosis surgery and I was 47 y.o. at the time. My lumbar

curve was " collapsing " according to Dr. Rand, a scoliosis surgeon in

Boston.

I can attest to life after being fused to S1. I can't bend like I

used to, so I have a reacher in every room and have become quite

adept with it. I have had to change my life, but it is livable and I

can keep my pain levels low as long as I keep life simple. My hips,

SI joints, knees, and feet will all complain loudly if I am too

active on any given day.

I am very glad the fusion surgery was available. In the 10 years

leading up to the surgery my pain was becoming unbearable and my

activity level less and less.

You say you have gone to 4 spine surgeons. Were any of them

scoliosis specialists? I am surprised that one would say you are too

young for this surgery.

As someone else has suggested, it would be good to go and see a

scoliosis specialist, or two. www.SRS.org can help you find one.

There is help for us out there.

July 19, 2003

You mentioned 'Bay Area.' Where are you?

--

Lana

**

****

********

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

>RETURN MEMORIAL DAY TO MAY 30TH<

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

********

****

**

July 19, 2003

Dear , What did you think of Dr. Rand? I saw him last year for a

second opinion.

I'm from Burlington, VT area.

--

Lana

**

****

********

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

>RETURN MEMORIAL DAY TO MAY 30TH<

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

********

****

**

July 20, 2003

Lana,

He's my doctor, as well, although he did not perform my surgery.

Carole

July 27, 2003

Hi, Joan!

I am 49 years old and had spinal fusion and Harrington rod surgery in 1976.

I have started having more problems in the past year--some things that were

occasional are now chronic. My main concern is pain in my left hip and leg.

I can't lie on that side to sleep any more. I went to an ortho at my

original group and he said that my fusion is solid and my rod is intact. Not

sure how much experience he has with adults so am persuing other docs for

more opinions. The doc I saw gave me Vioxx that doesn't seem to help at all.

Hope you find some relief soon.

Janet

South Carolina

----Original Message Follows----

From: " gingersnap124 " <j_thomsen@...>

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Help needed - late1960's scoliosis fusion

patient

Date: Fri, 18 Jul 2003 06:00:21 -0000

Hello,

I'm 49 years old and live in the San Francisco Bay Area. I'm

looking

for feedback, suggestions, help, and/or support. When I was 14

(1968) I had a T4 to L2 posterior non-instrumentated spinal fusion

for scoliosis. In my 20's to early 40's I managed all my

back pain

with a variety of exercises. In the last six years exercise has

aggravated my back pain. Around age 36 I started having difficulty

sitting for prolonged periods of time. That has only gotten worse

with time, progressed to include standing, and I no longer get the

relief I used to get with lying down.

In the last 5 years, I've seen 4 spine surgeons. 3 of those

doctors

were pretty negative about any further fusion and preferred I use

medication to deal with the pain. I have tried

all types of pain medications with many negative side effects and

limited pain relief.

I desperately want to regain the ability to sit and stand for long

periods of time. Pain medicine does not seem to be the answer.

Because of the long length of time this has gone on, I have developed

all the side effects you can get from chronic pain, i.e.; anxiety,

depression, feelings of hopelessness, etc. I am fighting daily to

hold on to my job that is 8 hours, 3 days a week. But it is hell

staying on my feet for 10 and a half hours.

So, is there anyone out there who has or is going through similar

circumstances? I know there must be others who had scoliosis fusions

around the late 1960's. I wish I had posted a message sooner; before

I became the mental mess I am now. I've always tried to solve my

own

problems but I really could use some support and suggestions.

I'm

terrified of being fused the rest of the way for it involves an

anterior/posterior approach with all its complications and potential

hazards. One doctor said I was too young to have it done at this

point. It would put too much strain on my SI joints and my hips. I

worry that I'm living needlessly in pain when surgery might help me

regain my life vs. it leaving me without a job and in a much worse

situation.

Thanks for reading all of this.

--Joan

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

July 27, 2003

Hi Lynne,

I read your post and certainly can identify with it! Is there any chance of

you getting to a pain clinic? I've had some good experiences at Pain Clinic

in the Boston area. Of course, I have no idea where you are writing from. It

took a while, but I do believe that my relief came from signing up with a real

Pain Clinic. I had various treatments until we ended up with the ones that

gave me some relief. Think about it? Your nearest hospital may have such a

clinic or, maybe you can find one in the yellow pages. I'll be anxious to hear

if you have found relief.

Carole (wishing you relief)

July 27, 2003

Hi Joan and Janet,

I am in a very similar situation to both of you. Joan - you are not

alone in your pain or in your frustration. I had surgery in 1975 with a

Harrington rod to L2. I have seen numerous docs these past few years as

I get older (I am 46). One surgeon wanted to fuse to S1. All have said

my fusion/rod is strong and intact. All have recommended exercise and

pain management. Exercise worked for the past few years along with

darvocet for bad days. But not any more. I too cannot sit or stand too

long and lying down is almost unbearable. My pain is in my right hip

and leg for almost two years.

I've given up trying to explain it to my family. It is a situation I

live with on a daily basis. I cannot work anymore. Even driving a car

aggravates my right hip.

Regardless hope you find some strength knowing others are out there.

This site has helped me enormously. I know there are bad days but I

know I can cope because everyone on this site understands and

empathizes.

Lynne

Help needed - late1960's scoliosis fusion

patient

Date: Fri, 18 Jul 2003 06:00:21 -0000

Hello,

I'm 49 years old and live in the San Francisco Bay Area. I'm

looking

for feedback, suggestions, help, and/or support. When I was 14

(1968) I had a T4 to L2 posterior non-instrumentated spinal fusion

for scoliosis. In my 20's to early 40's I managed all my

back pain

with a variety of exercises. In the last six years exercise has

aggravated my back pain. Around age 36 I started having difficulty

sitting for prolonged periods of time. That has only gotten worse

with time, progressed to include standing, and I no longer get the

relief I used to get with lying down.

In the last 5 years, I've seen 4 spine surgeons. 3 of those

doctors

were pretty negative about any further fusion and preferred I use

medication to deal with the pain. I have tried

all types of pain medications with many negative side effects and

limited pain relief.

I desperately want to regain the ability to sit and stand for long

periods of time. Pain medicine does not seem to be the answer.

Because of the long length of time this has gone on, I have developed

all the side effects you can get from chronic pain, i.e.; anxiety,

depression, feelings of hopelessness, etc. I am fighting daily to

hold on to my job that is 8 hours, 3 days a week. But it is hell

staying on my feet for 10 and a half hours.

So, is there anyone out there who has or is going through similar

circumstances? I know there must be others who had scoliosis fusions

around the late 1960's. I wish I had posted a message sooner; before

I became the mental mess I am now. I've always tried to solve my

own

problems but I really could use some support and suggestions.

I'm

terrified of being fused the rest of the way for it involves an

anterior/posterior approach with all its complications and potential

hazards. One doctor said I was too young to have it done at this

point. It would put too much strain on my SI joints and my hips. I

worry that I'm living needlessly in pain when surgery might help me

regain my life vs. it leaving me without a job and in a much worse

situation.

Thanks for reading all of this.

--Joan

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

July 29, 2003

Thanks, Lynne!

Have you considered a phone consult with a doc who specializes in adult

scoliosis? I am persuing this possibility now. There is a doc in Amarillo,

TX and one in Phoenix, AZ who do this.

Hopefully, we will all find a sympathetic, experienced doc!

BTW, where do you live? I live in upstate South Carolina. (Talk about no

docs even close!!)

Janet

----Original Message Follows----

From: Lynne Rosenberg <lrosen@...>

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: RE: Help needed - late1960's scoliosis fusion

patient

Date: Sun, 27 Jul 2003 19:50:52 -0400