Flatback & Other Back Problems.

January 1, 1970

Aloha To all you People out There Who Have an Aching Back,

I can vagueily remember a time when I thought people who complained about

their back hurting being a bunch of malingers & whiners, boy has the last 33

years changed my view, from black to white. My intent is for this post to

be short but sometimes when I get rolling I have a hard time knowing when to

stop, so I hope you'll bear with me if I get going & forget to stop

In reading your posts Ive been constantly impressed & astounded at what you

suffers of scolios, the types of surgeries, & their side effects, & the

process & problems of the Harrington Rod procedure. Despite the fact that I

have had 11 back operations, all for a variety of reasons & all with their

own set of symtons & problems. The general coonsensus has been Degenerative

Disc Disease caused by an accident when I was approximately 14.Diagnositic

equiment, including x-raay, was pretty primative 33 years ago.The diagnosis

was cracked tail bone & I should be more sedentary in my activities. Yeah

right, exactly what a 14 year old is going to do.

The years passed filled with all kinds of strenuous activity;marriage, 2

children,busy social life alot of which involved active athletic activities

such as water skiing, etc. Fifteen years after the original incidincident

back & leg pain reached the point where I could no longer ignore it combined

now with numbness going down right leg & etc.,etc.,etc. I finally went to

family doctor,who after taking x=rays, told me I had a serious problem that

was far beyond his expertise & he referred me to an orthopedist. He

recommended doing a mylogram,which turned into the procedure from hell when

they got nerve endings instead of iodine fluid everytime they attempted to

withdraw the fluid, they finally had to give up that day & retried,

successfully thank heaven, 2 days later to retrieve the fluid & gave me

their diagnosis. Which was that I had Degenerative Disc Disease, The bottom

2 discs were completely disolved, & I needed surgery. Otherwise HHe

operated in Feb., 2002

,

everything was just dandy.

I had my first surgery on Dec. 7,1970,maybe that date had something to do

with what lay ahead for me, and I have had 10 more since with a variety of

other things in between. However, I warned you about my long windedness &

I'm sorry I've been going on again. Unfortunately for you I must digress a

little more if you are to have any kind of clue of why I contacted your

group. I have had 3 surgerys in the past 17 months & I now have a lot of the

symptons & problems of " Flatback " , & I'm trying very hard to hook up with

others,who like myself have no background of scolios & the Harrington Rod

surgeries, or the revision surgery. My first tendency to want to do the

bend forward routine appeared before the May,2001 but the surgeon assured me

these should disappear after he corrected the problems that were going on

then. Immediaately afterwards this was the case & I was thrilled. About 3

months after the surgery my pain began to get worse again & worst of all the

forward bending was back & more intense. When I got home to our home in

Hawaii my Pain Management physician managed to locate the surgeon who had

done the May surgery & went to see him. He spotted the problem immediately

& said I should have surgery as soon as possible. He was unable to do it

because He had not received his hospital credentials in the new location &

he felt I should not wait & suffer any longer. I took his advice & was able

to get in with a highly qualified surgeon in Honolulu who performed his

first surgery on me in Feb. 2002. The surgery seemed to be the most

successful one I had had in years. In the May 2001 surgery I had all of the

hardware from the Steffe Plate surgery I had had in 1990. He had replaced

it with Titamiun screws & plates strengthing the sheletal part of the spine

& creating more stability. The doctor in Honolulu had changed the

positioning of the screws & added titamiun cages in the areas that were not

fused. He had been quite fearful that all of this surgery might require

doing a posterior & anterior surgery he, & all involved, were delighte when

he was able to do it all posteriorly. The horrors of a double procedure

such as some of yours that I have read causes me to be grateful all over

again & my admiration for those of you who have had it is endless.. I

digress again. About2 months after what seemed to be the perfect surgery at

the time suddenly went awry. I was hit with tremendous muscle spasms that

would cause me to wake up during the night screaming & the continnous pain

was between an 8-10 all the time. I flew to Honolulu immediately to find

out what was happening. X-ray showed that I had 2 compression fractures at

the L-4 vertebrae level with no visible reason or cause. We just knew the

situation called for immediate action. I had #11 on June 12th to repair the

fractures. I have recovered fairly well except for the " flatback " problem.

My pain level is mostly 2-4 unless I push it too far & hard. My pump is set

at a low dosage of Dilauid with the use of some Hydrocodone for the break

through pain & some valium for muscle spasms.

I know I've gone on way tooooooo long & I hope some of you have

persevered & hung in here with me & that if you have any news about Flatback

or any place or person who coulc shed some light on it Please I beg you

contact me & I promise to be short & concise. Good-luck to all of you

Feisty ScoliosFlatbackers, you are definitely an inspiration.

Best Wishto all,

Pat/Kona

May 12, 2003

Pat,

I'm sorry to hear what you have been through.

I hope you can find an appropriate Internet group. Back problems are

certainly very real and very painful for many of us.

Unless you have scoliosis and a history of surgical instrumentation

for scoliosis (particularly lumbar Harrington instrumentation), this

is not the best group for you and is probably not appropriate. The

problems of scoliosis surgery veterans, particularly those with

lumbar Harrington instrumentation, are unique. For years we lacked

adequate information and an available forum, unlike people with other

back problems. This group was formed to address that deficit. It is

one of the very few sites, even today, which specifically address

themselves to the needs and concerns of those with HARMS. For that

reason, we must limit our membership to HARMS patients.

Sincerely,

> Aloha To all you People out There Who Have an Aching Back,

>

> I can vagueily remember a time when I thought people who complained

about

> their back hurting being a bunch of malingers & whiners, boy has

the last 33

> years changed my view, from black to white. My intent is for this

post to

> be short but sometimes when I get rolling I have a hard time

knowing when to

> stop, so I hope you'll bear with me if I get going & forget to stop

>

> In reading your posts Ive been constantly impressed & astounded at

what you

> suffers of scolios, the types of surgeries, & their side effects,

& the

> process & problems of the Harrington Rod procedure. Despite the

fact that I

> have had 11 back operations, all for a variety of reasons & all

with their

> own set of symtons & problems. The general coonsensus has been

Degenerative

> Disc Disease caused by an accident when I was approximately

14.Diagnositic

> equiment, including x-raay, was pretty primative 33 years ago.The

diagnosis

> was cracked tail bone & I should be more sedentary in my

activities. Yeah

> right, exactly what a 14 year old is going to do.

>

> The years passed filled with all kinds of strenuous

activity;marriage, 2

> children,busy social life alot of which involved active athletic

activities

> such as water skiing, etc. Fifteen years after the original

incidincident

> back & leg pain reached the point where I could no longer ignore it

combined

> now with numbness going down right leg & etc.,etc.,etc. I finally

went to

> family doctor,who after taking x=rays, told me I had a serious

problem that

> was far beyond his expertise & he referred me to an orthopedist. He

> recommended doing a mylogram,which turned into the procedure from

hell when

> they got nerve endings instead of iodine fluid everytime they

attempted to

> withdraw the fluid, they finally had to give up that day & retried,

> successfully thank heaven, 2 days later to retrieve the fluid &

gave me

> their diagnosis. Which was that I had Degenerative Disc Disease,

The bottom

> 2 discs were completely disolved, & I needed surgery. Otherwise HHe

> operated in Feb., 2002

>

> ,

>

> everything was just dandy.

>

> I had my first surgery on Dec. 7,1970,maybe that date had something

to do

> with what lay ahead for me, and I have had 10 more since with a

variety of

> other things in between. However, I warned you about my long

windedness &

> I'm sorry I've been going on again. Unfortunately for you I must

digress a

> little more if you are to have any kind of clue of why I contacted

your

> group. I have had 3 surgerys in the past 17 months & I now have a

lot of the

> symptons & problems of " Flatback " , & I'm trying very hard to hook

up with

> others,who like myself have no background of scolios & the

Harrington Rod

> surgeries, or the revision surgery. My first tendency to want to

do the

> bend forward routine appeared before the May,2001 but the surgeon

assured me

> these should disappear after he corrected the problems that were

going on

> then. Immediaately afterwards this was the case & I was

thrilled. About 3

> months after the surgery my pain began to get worse again & worst

of all the

> forward bending was back & more intense. When I got home to our

home in

> Hawaii my Pain Management physician managed to locate the surgeon

who had

> done the May surgery & went to see him. He spotted the problem

immediately

> & said I should have surgery as soon as possible. He was unable to

do it

> because He had not received his hospital credentials in the new

location &

> he felt I should not wait & suffer any longer. I took his advice &

was able

> to get in with a highly qualified surgeon in Honolulu who performed

his

> first surgery on me in Feb. 2002. The surgery seemed to be the most

> successful one I had had in years. In the May 2001 surgery I had

all of the

> hardware from the Steffe Plate surgery I had had in 1990. He had

replaced

> it with Titamiun screws & plates strengthing the sheletal part of

the spine

> & creating more stability. The doctor in Honolulu had changed the

> positioning of the screws & added titamiun cages in the areas that

were not

> fused. He had been quite fearful that all of this surgery might

require

> doing a posterior & anterior surgery he, & all involved, were

delighte when

> he was able to do it all posteriorly. The horrors of a double

procedure

> such as some of yours that I have read causes me to be grateful all

over

> again & my admiration for those of you who have had it is

endless.. I

> digress again. About2 months after what seemed to be the perfect

surgery at

> the time suddenly went awry. I was hit with tremendous muscle

spasms that

> would cause me to wake up during the night screaming & the

continnous pain

> was between an 8-10 all the time. I flew to Honolulu immediately

to find

> out what was happening. X-ray showed that I had 2 compression

fractures at

> the L-4 vertebrae level with no visible reason or cause. We just

knew the

> situation called for immediate action. I had #11 on June 12th to

repair the

> fractures. I have recovered fairly well except for the " flatback "

problem.

> My pain level is mostly 2-4 unless I push it too far & hard. My

pump is set

> at a low dosage of Dilauid with the use of some Hydrocodone for the

break

> through pain & some valium for muscle spasms.

>

> I know I've gone on way tooooooo long & I hope some of you have

> persevered & hung in here with me & that if you have any news about

Flatback

> or any place or person who coulc shed some light on it Please I beg

you

> contact me & I promise to be short & concise. Good-luck to all of

you

> Feisty ScoliosFlatbackers, you are definitely an inspiration.

> Best Wishto all,

> Pat/Kona

May 12, 2003

Dear ,

I was wondering how you were doing, as we hadn't heard from you in a while.

I am happy to defend your right, as moderator of this list, to contradict

yourself, or change your mind. But thought you might not realize this is

what you are doing.

Back in December 2002 we had a bit of fur flying, as you may recall, when

our friend Suzy (anyone heard from her???) made a newbie named Gloria feel

quite unwelcome because, although she has severe scoliosis and disc

degeneration, her sagittal imbalance problem (flatback) was not caused by

scoliosis surgery (never had any).

At that time you responded with the message I am siting below.

I agree that since Pat from Kona is not a scoliosis patient, this is

probably not an appropriate forum for her. But by stating that " we must

limit our membership to HARMS patients " , you leave out Gloria and the other

person to whom you referred back in December.

Sharon (who actually has HARMS)

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

From: " elianarefaya <poetryperson@a...> " <poetryperson@a...>

Date: Thu Dec 19, 2002 8:16 pm

Subject: Re: From someone disabled from scoliosis...

Hi, All --

Sorry my online time is so limited right now.

Suzy is having some major medical challenges of her own to deal with

right now, but I trust she will clarify her position.

Gloria, you are definitely among the very special group of us for

whom this list was created! Come back, come back, wherever you are --

we need you and want you.

My disclaimer for all of our posts will soon be forthcoming. I will

try to get something provisional, at least, posted very soon. We need

to remember not to give medical advice, not to read medical advice

into lay opinion, not to worry about opinionated people who rub us

the wrong way even when those people are ourselves. . . . (Just

joking. Well, sort of.)

My own personal worry re the foregoing issues: One of my dearest

friends is a member of this list and I live in fear that she may

leave any moment. She read the very prose Sharon quotes from me as

meaning that SHE is no longer welcome at this list because her

scoliosis-surgery sequelae apparently do not include flatback per

se.I wrote her a letter attempting to clarify my position but have

not heard back yet.

Bless you, Sharon, for reading me as I intended to be read -- I am

not happy to see that someone HAS left the group over such issues but

am thankful that so far Gloria is the only one. I hope you will

relent, Gloria. You are most warmly welcome here, and besides, we

need to let each other know when we miss the boat or don't cover all

the bases . . . Thanks for your helpful clarifications.

Eliana

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At 01:10 PM 5/12/03 -0000, you wrote: