Re: Hey! I'm new here

[Guest guest]

>Hi Casee,

I'm a relative " old-timer " on the list. Welcome! Just wanted to put in my

two cents' worth about having the surgery and then never having any

problems again. I too was told that once I had the Harrington surgery, in

1977, that that would be it - after a year in a body cast and another year

in a rigid plastic corset (this was the Italian post-operative protocol) I

could return to all activities, except the usual parachuting that all the

docs seem to get a kick out of telling us we can't do....

Well, it ain't so. Now, six surgeries after the original one, the last an

11 and a half hour flatback revision, I can tell you that scoliosis is here

to stay. I think all of us have got to deal with the fact that we have a

chronic disease - unfortunately it doesn't get the publicity that

situations such as rheumatoid arthritis get - but it's definitely a disease

that's not going to disappear after some very serious surgery. I'm not

saying we should lie down and give up, rent our clothes and wail - BUT I

think we DO have to get it across to newly diagnosed patients that this is

something that is NOT going simply to go away after a couple of years of

treatment. It's a lifelong deal we've got.

I wish we could, as a group, get our docs to deal with this issue more

honestly as well. Does anyone have any ideas? Thanks for letting me vent.

from Italy

[Guest guest]

,

I am so with you! It is a terrible injustice to be told (as I was 18

years ago) to have " Have a nice life, your cured " . It should be our

right to have all the facts about our disease, uncertain or not, and

make educated choices about our care AND receive great, caring follow-

up help. My surgeon in Houston, Texas (Mr. Star surgeon trained by

Dr. Harrington) made it clear he does not deal with post-op pain. I

visited his office once and called several times as pain progressed

only to be told " Fusions Fine! " . I don't understand why most

scoliosis doctors are not concerned with monotoring all surgical

scoliosis cases for life? So many of us have the same symptoms 10 +

years later! See how few studies we have to refer to because of this!

No doubt, severe scoliosis patients risking lung function have been

saved by these doctors, but all cases dire or not should have the

right to know what the long-term future MAY hold. AND how about the

large number of patients like me who were 48 degrees or so.....is the

trade off for more surgery(ies) worth the risk of waiting and seeing

if the curves progress over time? I (really my parents) was not

given the opportunity to make that choice. Who really knows what the

long-term effects are for the newer instrumentation? Is this pattern

of misinformation continuing even today?

I will help with any movement to get this point across to doctors in

the field AND to general practitioners who first see patients with

scoliosis. I think it will take an organized plan to do any good. I

wish I could win the lottery and get a huge billboard put up in every

large city to start a campaign! I am shocked how widespread this

sentiment is..... did the docs have a big meeting years ago and

decide to all treat us like this?

Okay, now I've vented, but I don't feel really feel ANY better about

this whole mess! I tear up everytime someone new finds us and says

the same thing about their care and immense pain they are in!

in Waco

[Guest guest]

Mmmm, , I think a lot of us have ideas, but unfortunately most

of them involve putting doctors under house arrest, wrapping them

tightly in hot plaster (being sure to squish in their bellies so they

can't eat), and keeping them in bed until their leg muscles atrophy,

all to a continual chorus of " Wiggle your toes " ... Ah, yes, and be

sure to half-cast their heads so they can't wash their hair properly

for a few months, so their scalps itch almost as much as the dead

skin all over their backs...

Yeah, you're certainly right about the invisibility of this disease.

Or is it that it isn't photogenic enough? Hey, did you ever ponder

how Forrest Gump's spine, which was " shaped just lahk a letter S " ,

got straightened right out by wearing braces on his legs (all the

while teaching Elvis how to dance), until they miraculously fell off

while he was running, running like the wind, right into a football

scholarship and a Congressional Medal of Honor for athletically

heroic acts in Viet Nam? (Hey, I LOVED that movie, saw it 3 times.)

But come on. The entertainment peddlers certainly don't think Joe

(and Jane) Sixpack want to know the truth about us crooked little

hunchbacks, do they?

Well, there I go venting. Yeah, it would be nice if someone would do

a truthful documentary about scoliosis that didn't involve a rosy

portrayal of some wonderful new surgical advancement which seemingly

cures the disease with a minimum of time and blood lost.

BTW, welcome to all the new members of this fast-growing group. When

I have something really helpful to say (other than " You're not alone,

and you're right, we were sold a pack of bean seeds, but I guess a

lot of us could have ended up a lot worse off " ), I'll pipe up again.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

> >Hi Casee,

>

> I'm a relative " old-timer " on the list. Welcome! Just wanted to put

in my

> two cents' worth about having the surgery and then never having any

> problems again. I too was told that once I had the Harrington

surgery, in

> 1977, that that would be it - after a year in a body cast and

another year

> in a rigid plastic corset (this was the Italian post-operative

protocol) I

> could return to all activities, except the usual parachuting that

all the

> docs seem to get a kick out of telling us we can't do....

>

> Well, it ain't so. Now, six surgeries after the original one, the

last an

> 11 and a half hour flatback revision, I can tell you that scoliosis

is here

> to stay. I think all of us have got to deal with the fact that we

have a

> chronic disease - unfortunately it doesn't get the publicity that

> situations such as rheumatoid arthritis get - but it's definitely a

disease

> that's not going to disappear after some very serious surgery. I'm

not

> saying we should lie down and give up, rent our clothes and wail -

BUT I

> think we DO have to get it across to newly diagnosed patients that

this is

> something that is NOT going simply to go away after a couple of

years of

> treatment. It's a lifelong deal we've got.

>

> I wish we could, as a group, get our docs to deal with this issue

more

> honestly as well. Does anyone have any ideas? Thanks for letting

me vent.

>

> from Italy

[Guest guest]

Hi ...

I'd like to encourage you to name your surgeon instead of

unintentionally implying that they're all bad. You cannot be sued

for defamation if you're stating the facts.

As I'm sure you'd agree, there are some good doctors out there,

and they probably hate being grouped with together with doctors

who aren't all the great.

Not that it helps, but I honestly believe that surgeons really

thought they were fixing your scoliosis permanently when they

implanted Harrington rods. It wasn't until the population of

patients started aging significantly, that problems were known. If

there are still scoliosis surgeons out there, who tell their patients

they'll never have to worry about their spine again, they should be

exposed. I think, for the most part, surgeons don't try to

sugar-coat the facts about surgery. I've heard dozens of

surgeons give the basic scoliosis talk to patients, and I don't

ever remember a time that they didn't talk about potential

complications.

Regards,

> up help. My surgeon in Houston, Texas (Mr. Star surgeon

trained by

> Dr. Harrington) made it clear he does not deal with post-op

pain. I

> visited his office once and called several times as pain

progressed

> only to be told " Fusions Fine! " .

[Guest guest]

Thanks and Everybody...

for being so supportive about my venting. While I agree with that the

doctors do talk about complications, at least in MY case, they very much

glossed over them. This left me with the idea that once I had the surgery I

would be perfectly normal. In fact, I thought there was something WRONG

with me that I couldn't negotiate a particularly difficult trail (the kind

where you have to mountain climb, not just hike) up Mt. Blanc in a body

cast.... I know, you are all probably thinking, " is NUTS or

something " but I truly took to heart what they said about being able to

lead a perfectly normal life, and mountain-climbing was normal for me. I

think people should be more educated about how the vertebrae above and

below the fusion are going to be under greater stress. We should also be

taught how to " save " the viable part of our spines.

I certainly do not think that doctors are in bad faith - I see them as a

generally optimistic group who like to think that every case is going to go

just fine. When it doesn't they are probably as upset as we are. But

still.... forewarned is forearmed. If only I had known how to take care of

my back properly post-surgically I might (and I should stress the " might " )

not have had the problems I encountered.

Hope I haven't bored you or opened a Pandora's box... but these are issues

I think we, and our fellow-traveller-doctors, should be talking about.

All the best,

from Italy

[Guest guest]

,

I'm getting the impression that you've received better medical care

and advice than some of the other posters on this board. I would

think this would at least partially explain your more positive

attitude about the medical community. Am I remembering correctly that

you never had Harrington Rods? If not, it makes sense that your

experiences are bound to be a little different from some of us that

have. I doubt would be criticizing doctors as much if she had

more experience with good, helpful ones.

Of course, medicine is not an exact science. Doctors take their best

educated guess on what will help us. Yes, it's a fact that early on,

no one knew that Harrington Rods would cause late-onset

complications. Can we at least assume that you agree that it is a

good thing that Harrington Rod use has generally been discontinued?

But what about the people who had their rods put in in the late 80's

and 1990s and beyond? I can't help but wonder if their doctors were

somehow just uninformed that there were better alternatives than

Harrington Rods. I think one of the main benefit of these support

groups is the sharing of information which may help us determine if

the doctor we are seeing is similarly uninformed. And of course the

support groups provide a useful venue for letting us vent with others

who have been where we have been and for giving support to go forward.

What do you think about 's suggestion that scoliosis patients be

monitored for life? I think it's a good one. You are more up on the

new practices than I am. For how long are current teens monitored

when they have new fusions? And for how long are revision patients

generally monitored after their revisions?

I look forward to hearing your thoughts,

loriann

[Guest guest]

Hi,

I can think of several possible reasons for surgeons not telling

us about potential future problems. Any opinions stated here are

mine alone. (I don't even play a doctor on TV :-) I didn't even

play doctor when I was little :-) Other disclaimers - I was

diagnosed with scoli in 1969. Surgeries were in 1996 and 2002. I

also have Luque rods rather than Harrington. Even though I wasn't a

fusion trailblazer and never wore a body cast, I think I have some

personal issues in common with some that were posted earlier.

o At least in the '70s, doctors just didn't know. This was state-

of-the-art then and there was great hope of a permanent " fix " but

there wasn't enough history for them to know what was coming.

o Here's an ethical question: We were in great pain and something

needed to be done. Would you then, as a doctor, strongly emphasize

to the surgery candidate that your immediate problem will be

addressed but this fix may bring about a slew of complications?

o Another ethical question: We've had to eliminate most of our

activities because of scoli. (Here's an assumption and not

necessarily medical fact.) Since we're most likely going to be in

pain again in a few years, isn't it a good thing to let the patient

get their life back for awhile?

o Fixing the immediate problem is the best they can do. It is not

currently possible to fix our scoli without, at least in our cases,

bringing on other effects of surgery. This leads into the first

ethical question I asked above.

o Conjecture here - Fixing the main problem (scoli) may bring on

other problems, but the follow-ons may be easier to fix than the

original? Then again, they may not. One problem with this is that

the secondary fixes often have greater impact on quality of life than

the original fusion. My first fusion was T4-L4. My second was L3-S1

and definitely more noticable. Am I affected more by the location of

the second fusion or is it a combination of fusions that makes it

seem like the second is more noticable? I've certainly learned a lot

about what part of the back is involved in certain activities

(bending, sports such as volleyball and basketball, etc.).

o Mental attitude of the patient. HOPE is a very powerful thing

in recovery. Believing that you've got some normalcy in your life

again is important.

o Here's where I stretch things a bit. Treating each problem

separately rather than part of the whole. If we consider our fusion

to have fixed the scoli, then the flatback or disc degeneration are

separate problems. Nevermind that they were brought on by the fusion.

I'll agree that telling us how to treat our bodies with TLC to

reduce the inevitable wear and tear would have been the right thing

to do. I also agree that treating scoli as a lifelong condition

(since that is what it is) is the right thing to do.

Before my first fusion, my doctor did tell me that the discs above

and below the fusion would start to go. There wasn't any mention

(nor did I ask) of how many discs would go, how soon would this

process start, what symptoms should I be aware of, would this require

corrective surgery, etc. Not that it would have changed anything...

Well over a year ago, I asked on another list if anyone knew what

percentage of fusion patients had disc degeneration later. I never

got a reply. Not a single one. Not that it would have changed

anything...

[Guest guest]

,

This same topic has been discussed from time to time on various

internet support groups, but I (and it looks like you and a few

others) still get frustrated thinking about it. Okay, so I accept

the reasoning that we were not given good advice about how to take

care of our spines at the time we got our Harrington Rods because

doctors did not know that we were going to run into problems. But

then it DID become known, at least to some of the spine/scoliosis

specialists. I think it was ? that posted we can't expect one

doctor to know everything. I, of course, agree with that, but I

can't help but think that SOMETHING more should be done to educate

the " first responders " like family doctors and general practitioners,

so that they know not to pooh pooh our symptoms, but instead to refer

us immediately to whatever specialist is best qualified to really

educate us about both the future risks and the best way to manage our

spines. I'm not angry that the doctors initially didn't know that

Harrington Rods might screw up my spinal balance. I'm angry that

once they did realize it, NOBODY TOLD ME there was a pretty good

chance this would become progressively disabling and I'm angry that

nobody gave me any strategies for slowing the progression! Yeah, I

accept that perhaps it would have been expecting too much for them to

try to track me down to educate me. So I am left with desiring that

they would have somehow fostered a wider knowledge of the risk of the

late onset complications that having Harrington Rods carries.

Also, I don't necessarily think I need to totally let go of my anger

in order to move forward. I think that a little anger is helpful for

giving me adrenalin to fight the flatback fatigue so I can muster

even a little bit of energy to seek out answers and help.

Thanks, , for posting your thoughts, and also for letting me

vent.

loriann

[Guest guest]

Hi ,

Ha, Ha, I would never want to be a doctor and have all these people

(like myself) griping about me!

Anyways, just a couple more comments. Because no two situations are

alike, it's normal for everyone's opinions to be very personalized,

but great when we can find common ground.

I agree with your assessment of the doctors' motivation to get people

out of pain the best way they knew how. However, some of us were not

in any pain, just somewhat deformed.

Thanks for reminding me that I had a bunch of carefree years, I am

very thankful for that, even though I was doing damage that needs to

be fixed surgically now. But I would have rather been given

information and made my own choice on how to act upon that info.,

rather than letting doctors make the choice for me.

Oh, if only all your ethical questions were easily answered. There

would be no need for the wonderful discussions we participate in on

these groups.... I truly consider myself blessed that I live in the

age of the internet and have access to everyone's opinions.

Observation: Although I to some extent understand doctors'

tendencies to have to treat problems separately, I think there is a

growing desire by patients for more of team effort.

For me, I continue to believe that earlier information and knowledge

might have changed some things.

Sorry if I'm being thick here, but I'm not clear on why you think you

didn't get any answers to your over a year ago query? I guess I

assume that information simply doesn't exist. Please let me know if

I'm missing your point, okay?

Your post was very thought provoking and thanks for also listening to

my opinons.

loriann

[Guest guest]

Hi Loriann...

You're correct. I do not have Harrington rods. But, I've been with

perhaps two dozen people who had scoliosis surgery with either

Harrington rods or no rods, when they went to doctor's

appointments. This is not with one doctor. It's with almost every

scoliosis specialist in Northern California. Perhaps the doctors

are more concious of what they say when I'm in the room, but I've

never heard any doctor paint a rosy picture for a patient. They all

talk about how tough the surgery might be and how there's no

guarantee that the surgery will fix it all.

If, indeed, doctors are out there painting rosy pictures, and you

feel that you've been enticed to have surgery with false hopes,

than you probably have a case against your surgeon. I don't

think that doctors can possibly tell you everything that might go

wrong, but they should definitely cover the big stuff. Perhaps

asking to see the permission/disclosure slip before entering the

hospital would be a good thing. And, ask your doctor to discuss

all of the complications.

I think it's a good idea for doctors to keep track of their patients

who have been treated. A few years after my surgery, when I was

" released " from treatment, my surgeon told me to come back if I

experienced any unusual pain or symptoms. I suspect that what

you've experienced, along with many others, is that you've gone

to scoliosis specialists when you had pain, and they've told you

that your fusion was fine. That is definitely not a problem with the

industry. There are studies published every year, that discuss

the problems with prior fusions. If a doctor doesn't read the

literature, or attend conferences where the issues are presented

and discussed, it's a problem with that specific doctor. I suspect

it's those same doctors that won't ever keep track of their

patients. That's why I feel it's appropriate to name those

surgeons. Why would anyone be afraid to do that if what they

post is the truth?

Regards,

[Guest guest]

Hi Loriann,

> Sorry if I'm being thick here, but I'm not clear on why you think

you

> didn't get any answers to your over a year ago query? I guess I

> assume that information simply doesn't exist. Please let me know

if

> I'm missing your point, okay?

No problem. Just that there were absolutely no replies to my

question. Usually, someone will at least post a guess, but this was

a black hole. At the time, I was really miffed that nobody else

cared about my question, one of such significance that just in the

asking, I would gain fame, fortune, write-ups in several prominent

medical journals as the guy who asked " The Question " , and my picture

on the cover of the Rolling Stone. (Is Eliana rubbing off on me?)

On a serious note, I still think that this is an important

question to have answered. Conjecture here - IF you were almost sure

to have discs go on you, this would just about guarentee a second

operation, either disc replacement or another fusion. Would that

knowledge affect your treatment decisions, both present and future?

If a vast minority of fusion patients have disc degeneration (I'm

just one of the unlucky), then that might be an argument that the

procedure really *is* the way to go.

Of course, there could be many reasons for the lack of replies.

o Sincere lack of interest

o Like you said, no available stats so nobody replied (most

probable)

o State of denial by a lot of people

o If a huge majority of people develop disc degeneration, there

would be either fewer fusions out of fear (even though they are

really needed)

o (insert evil laugh) Lawsuits. The old " you doctors knew that

I'd develop this problem so why didn't you disclose " type of argument

that juries see.

Maybe some combination of the above...

[Guest guest]

Hi ...

Excellent points. These are questions that aren't easily

answered. If one were to look at all the published papers, one

might never have scoliosis surgery. The list of complications is

huge... all the way from easily fixable things to life changing

problems (like blindness, neurological problems,or even death).

Would any of us have surgery if we knew it all? I think many of us

would. Pain is an amazing motivator. Would we rather live in

horrendous pain for the rest of our lives, or take the leap and

hope that we don't experience any of the really bad things?

The long-term studies that have been published in the last 5

years are extremely helpful. They can't tell us, individually, what

will happen to each one of us. But, they can give us a good idea

of what the odds are. Unfortunately, if you're the one person in

100,000 who has some horrid complication, I think you'd

probably believe that all that information wasn't very usefull.

The bottom line is that I think it's important for people to seek out

medical professionals who are willing to help us make

completely informed decisions.

Regards,

[Guest guest]

Hi ...

I don't think there's any one right answer to your question. I have

one disc below my fusion that is bad, but all the rest look really

good. The discs above my fusion are showing only minimal

wear. I know people who have had 3-4 discs go bad. I even

have a friend who was fused to L2. Her L2-L3 disc was trashed.

Her L3-L4 disc is fine. And, her L4-5 disc is trashed. I also

know a lot of people who have had no degeneration despite the

fact that they lead active lives.

Here's another good question... If you knew that there was a 50%

chance of one or more discs going bad unless you never carried

anything heavier than 15 pounds, never ran or did anything to put

any additional stress on your spine, would you do so? Or, would

you try to lead a normal life, and be grateful for the years without

pain?

I think that it's human nature to want to blame someone for our

pain (especially when there's extreme pain).

Regards,

[Guest guest]

,

I like your outlook & views.

I do have degeneration about & below the fusion. Have been told that for a number of years but had my first MRI Monday. Will let you know the extent then. After 9 months in a plaster body cast in 1969 my neck has always been weak. I always thought it was just muscular but now know different.

Joyce in Atlanta, GA

[Guest guest]

Okay,

I've read all the quite feisty messages since I " vented " yesterday.

I like 's style, so I'll list my points....

1) My surgeon was Dr. Dickson in Houston, Texas. I've posted

that MANY times before. I went to him for pain three times post-

surgery and each time I was told that my fusion was fine, live with

the pain. I was given no referral and made to feel like I was

crazy. No, I do not fault him for performing Harrington Rod surgery

on me. On the other hand, having my surgery in 1985, I know that he

had to have other patients coming in with problems by then. No, I

don't have proof. 1985 was also the year that he stopped performing

Harrington rod surgeries. I was told because of my age (21) they

would not do the cotrel method on me? As a human, I find it hard to

believe that he did not care about the outcome of his patients, but

since he is retired I guess I will not have the chance to confront

him about this.

2) The reason I blanketed comments on this regard is because I have

visited with 3 other patients of Dickson's that claim the same

outcome. One of these patients had surgery 10 years ago and was

treated the same way up until a year ago by this surgeon right before

he retired. Also, I have visited with many of you on this site that

were treated the same way by their surgeons. Believe me, I would

really like to hear that there are surgeons out their giving patients

the big picture!

3) Whining, ranting, venting, whatever...I think we should all be

able to do this in this forum without being pooh-poohed. No, we will

not always agree, but I think it's amazing to have each other to

discuss the issues. Before last November, I prayed often to find

someone in my same situation. I had been floundering from doctor to

doctor (even scoliosis docs that were clueless) for 4 years until I

found these forums. I don't know about you guys, but I get

incredible power from the knowledge of what each of you is going

through. Yes, all of us have ups and downs but it is a process of

healing EMOTIONALLY and physically. Until three months ago, I didn't

even know where I was fused? I knew I had a harrington rod, but

didn't even remember that I had two! I had a neurosurgeon tell me

last year that if he took out the bulging disk in my neck it might

help the pain in the rest of my spine! UGH!

[Guest guest]

Hi ,

> Here's another good question... If you knew that there was a 50%

> chance of one or more discs going bad unless you never carried

> anything heavier than 15 pounds, never ran or did anything to put

> any additional stress on your spine, would you do so? Or, would

> you try to lead a normal life, and be grateful for the years

without

> pain?

That's a really good question. I suppose everybody will approach

this in their own way. As for me, I don't know the answer. I've

never had to think about it. Its probably in my nature to hold off

on some things and do others. My wife and I, just last night, talked

about my going to play volleyball. She said that I'm not capable of

having an easy game, that I would push myself as hard as I could. I

mentioned that my limit is much lower than it was before fusion. I

could see her point, though.

As a minority on the various lists around here (male), I don't

often vent the " guy " issues. But, I've told my wife that there's a

difference between not wanting to do something (I'm just a bit lazy,

only a tiny bit, mind you :-) and being incapable of doing

something. This hits home when there are expectations on what a man

is supposed to do (or be capable of doing). I have problems when my

wife asks me to do something and I know I shouldn't. For example,

carrying 40 lb bags of water softener salt to the basement is a no

brainer for a non-fused male but its something I have to defer to

others. Change a flat tire? Forget it. These are both things that

one would expect a 45-year male to do.

Its even worse thinking about a 15 lb limit.

I see what you're getting at, though. If an extremely restricted

life style is the only way to avoid disc degeneration (and it might

not even work), then is there any point in telling someone about it?

Is it worth having guilt feelings after doing something that just

makes you part of your family?

It might have been possible, before or after surgery, to emphasize

that we're delicate. We should limit spine-stressing activities

because the more the discs are stressed, the quicker they will

degenerate. Basically, put the ball back in our court by letting us

decide when to stress. If I'm told to live my life normally and want

to play volleyball, a certain amount of stress is on my back. If its

suggested to limit spinal stress, I might be willing to cut back on

the volleyball to get another year before another fusion.

> I think that it's human nature to want to blame someone for our

> pain (especially when there's extreme pain).

Some people blame, some accept that their back is the way it is and

nobody set out to make it that way. But this is a whole different

topic.

[Guest guest]

Hi ,

This is in reply to your post 796. I am really happy to hear your

experiences that current doctors doing patients' first fusions or

older patients' revisions ARE giving their patients an accurate

picture of risks/possibilities for complications.

That being said, I also believe the experience of the other poster(s)

who feels her doctor painted too rosy of a picture. I think we agree

that there are SOME bozo doctors out there, and that even the good

doctors can have a bad or rushed day where something that should be

told a patient gets overlooked. And there are probably doctors who

don't keep up on the latest spine studies and research and

conferences quite as well as some other doctors (and some sufferers

for that matter) do.

It's interesting to see the variety of experiences, and I feel this

emphasizes the importance of getting multiple opinions and asking

lots of questions before one has surgery.

I've personally never recently seen an orthopedic doctor who painted

too rosy of a picture concerning surgery. If I had, though, I'm not

sure I know enough about law to be confident in posting their name on

a public forum. However, I would have no problem posting about my

experience in general and then releasing their name in a private

email or call.

I have seen doctors in Upstate New York that I don't consider at all

knowledgable or experienced about flatback syndrome, and I would also

have no problem telling anyone who wanted to contact me privately all

about them.

Do you know if the doctors that you have experience with agree with

you that it's a good idea for them to keep track of the patients

they've treated? Something like my eye doctor does would be good.

He sends a nice post card reminding me to come in every few years for

a checkup. Come to think of it, my gynecologist and mammogram place

does the same thing. Seems like a pretty acceptable thing in many

medical fields. How about in scoliosis/spine surgery?

Thanks for the ongoing dialogue,

loriann

[Guest guest]

,

I don't have experience being a male, but do, of course, have

experience in needing to be careful of my 44-yr.-old back, and in

moving 40 lb. bags of softener salt (like someone couldn't pack it in

20 lb. bags?!). Having a 39-yr-old male in the house with no back

trouble is no guarantee against my having to move them, as he insists

on carrying the foolish things by hand, which makes the task much

harder to get around to -- as in, " You said you'd put the salt in the

softener 3 weeks ago, dear. My bath water was rusty and I can't

drink this stuff. " (And in fairness he is battling diabetes and

depression while supporting the two of us in a demanding high-tech

job.)

It's a nuisance, but with my handy-dandy garden cart I can get the

job accomplished, as indeed I accomplish many heavy chores. I'm not

even talking one of those macho 1-wheeled wheel barrows, which are

made to pull against you and fall over unless you exert great force

on the rough wooden handles. I'm talking a sissyish, plastic, 2-

wheel job that clatters like a doggone Big Wheel trike.

It's been a long time, but I have in times past managed to change a

tire, too. I've developed methods of doing things that compensate

for my limited strength and flexibility. I guess that's something

that we women take in stride. Not that I never get impatient and

aggravate my back and neck muscles by lifting something stupidly.

But I'm always finding myself reminding my husband how to lift

properly so he doesn't hurt himself. I tried a few times with my

brother too, but that was before he developed herniated discs all

through his lumbar spine. Big, tough guy with only a slight

scoliosis and no fusions, thought because he COULD lift heavy things

any way he chose, that it was SAFE to do so.

In some ways we're blessed to know that we are limited, and have to

protect our less-than-immortal bodies.

But you can find adaptive ways to do many things, if you put your

mind to it.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

>

> As a minority on the various lists around here (male), I don't

> often vent the " guy " issues. But, I've told my wife that there's a

> difference between not wanting to do something (I'm just a bit

lazy,

> only a tiny bit, mind you :-) and being incapable of doing

> something. This hits home when there are expectations on what a

man

> is supposed to do (or be capable of doing). I have problems when

my

> wife asks me to do something and I know I shouldn't. For example,

> carrying 40 lb bags of water softener salt to the basement is a no

> brainer for a non-fused male but its something I have to defer to

> others. Change a flat tire? Forget it. These are both things

that

> one would expect a 45-year male to do.

>

> Its even worse thinking about a 15 lb limit.

>

[Guest guest]

Dear ,

Today (2/27/03) is the one year anniversary of my a/p revision surgery. I would like to say that I am celebrating this momentous occasion, but that would not be entirely accurate. You've posed the question - if you were almost sure that more discs would go on you and you would have to face further surgery, would this knowledge affect your decision regarding your treatment options?

Like you, I came to scoliosis surgery relatively late in life. My first a/p procedure was in 1999 - fused T10-L5 - at the age of 47. I was told that my S1 disc should last about 10 years. That's it. That's all that was said about the future state of my disc. I believed what I was told. Why shouldn't I - I surely didn't know anyone who had had similar surgery to compare notes or share information. Unfortunately, the disc "went" within a year's time. I hung on for another year (fear factor, daughter getting married) but then went in for the information about S1 fusion. I'm not even calling it revision surgery at this point because I never heard that term used until after my surgery! My husband and I were quite angry and confrontative at this meeting. We demanded to know why the S1 disc wasn't fused at the time of the original surgery, instead of making me go through another a/p procedure so soon after the first. The dr. said this was not standard procedure, and that the disc was still good at the time of the 1st surgery. We made him show us on the x-ray, and yes, we could both see the disc height. He also explained the possible ramification of S1 fusion; next, the hips could go, then the knees, all from the added pressure and stress from the above fusion. He said that in order to have fused the S1 level at the first procedure, he would have had to stage the procedures a week apart. ( My 1st surgery was 12 hours, the revision was 8 hours). While that sounded positively barbaric, I'll never know what my decision would have been because I was never given the opportunity to make that decision.

So, in hindsight, what would my decision have been if I had been presented with all the facts at the time? I lean toward having it all done at the same time - get all the recovery done and out of the way. But how can anyone truly second guess oneself? What I do know with certainty is that false hope should not have been extended to me. I should have been told that the majority of patients who have this amount and type of fusion come back within a year's time to finish the job. (We went to another scoli dr. for a 2nd opinion and this is what he told us). Or was I just monumentally naive and trusting; i.e., gullible?

Now, I'm waiting to have a 3rd procedure to remove pelvic screws and rods from my sacrum and pelvis. This has not been a pleasant year, as these items have been most painful and prominent, as promised! Was there any lifestyle change I could have made to prevent the S1 disc from going? I'm quite certain that I did nothing to bring this degeneration on so quickly. In all honesty, I'm afraid to have this 3rd procedure, even though these screws and rods keep me housebound most of the time. I keep thinking - What don't I know about this procedure - is this decision going to haunt me down the line? I certainly did not know that revision surgery is a very, very big deal. I was told that this surgery would not be nearly as painful as the 1st, and that turned out to be a very happy fact. And I do love my beautiful lordosis - so does my husband!

Carol (not the one with Harrington rods)

[Guest guest]

Hi ,

Doctors don't want to dwell on the negative before a surgery as they want their patient to be in the best positivie mind as possible. In any life-long condition, they should monitor their patient to guide them to the best possible life. This way they can inform the patient of any definite complications/conditions when appropriate. They could be very helpful in suggesting and putting in contact a support group.

I wasn't on any list a year ago so in answer to your question about disk degeneration, I have it below L2-3, according to my latest report, done 3 years ago. I've had to change GP's since then which means reeducating my current doctor. Because of what I have learned through this forum and others, I am asking more specific questions and getting better responses. In fact, my GP phoned to say that he is still trying to get me into the Spine Clinic and a certain doctor, then asked if I heard from my sources any results or suggestions. So from that, I suggest letting your doctors know that you are in contact with other scolio people and some of their general experiences with pain/symptoms and possible treatment/surgery.

Llweyn

-----Original Message-----From: scott_blackledge <scottb2@...> [mailto:scottb2@...]Sent: February 26, 2003 7:33 AM Subject: Re: Hey! I'm new hereHi, I can think of several possible reasons for surgeons not telling us about potential future problems. Any opinions stated here are mine alone. (I don't even play a doctor on TV :-) I didn't even play doctor when I was little :-) Other disclaimers - I was diagnosed with scoli in 1969. Surgeries were in 1996 and 2002. I also have Luque rods rather than Harrington. Even though I wasn't a fusion trailblazer and never wore a body cast, I think I have some personal issues in common with some that were posted earlier. o At least in the '70s, doctors just didn't know. This was state-of-the-art then and there was great hope of a permanent "fix" but there wasn't enough history for them to know what was coming. o Here's an ethical question: We were in great pain and something needed to be done. Would you then, as a doctor, strongly emphasize to the surgery candidate that your immediate problem will be addressed but this fix may bring about a slew of complications? o Another ethical question: We've had to eliminate most of our activities because of scoli. (Here's an assumption and not necessarily medical fact.) Since we're most likely going to be in pain again in a few years, isn't it a good thing to let the patient get their life back for awhile? o Fixing the immediate problem is the best they can do. It is not currently possible to fix our scoli without, at least in our cases, bringing on other effects of surgery. This leads into the first ethical question I asked above. o Conjecture here - Fixing the main problem (scoli) may bring on other problems, but the follow-ons may be easier to fix than the original? Then again, they may not. One problem with this is that the secondary fixes often have greater impact on quality of life than the original fusion. My first fusion was T4-L4. My second was L3-S1 and definitely more noticable. Am I affected more by the location of the second fusion or is it a combination of fusions that makes it seem like the second is more noticable? I've certainly learned a lot about what part of the back is involved in certain activities (bending, sports such as volleyball and basketball, etc.). o Mental attitude of the patient. HOPE is a very powerful thing in recovery. Believing that you've got some normalcy in your life again is important. o Here's where I stretch things a bit. Treating each problem separately rather than part of the whole. If we consider our fusion to have fixed the scoli, then the flatback or disc degeneration are separate problems. Nevermind that they were brought on by the fusion. I'll agree that telling us how to treat our bodies with TLC to reduce the inevitable wear and tear would have been the right thing to do. I also agree that treating scoli as a lifelong condition (since that is what it is) is the right thing to do. Before my first fusion, my doctor did tell me that the discs above and below the fusion would start to go. There wasn't any mention (nor did I ask) of how many discs would go, how soon would this process start, what symptoms should I be aware of, would this require corrective surgery, etc. Not that it would have changed anything... Well over a year ago, I asked on another list if anyone knew what percentage of fusion patients had disc degeneration later. I never got a reply. Not a single one. Not that it would have changed anything...Adult scoliosis support; focus on fixed sagittal imbalance. WE DO NOT ENDORSE ANY PRODUCT OR SERVICE ADVERTISED HERE AND HAVE NO CONTROL OVER ADS.

[Guest guest]

Hi Loriann...

I doubt it would be cost effective for everyone with scoliosis, or

even only those who have had surgery, to be seen by a doctor on

a yearly basis. The vast majority of people just don't need to be

seen that often. Instead, I think it's important for doctors to tell

their patients to come in if they have any unusual pain or loss of

function.

In regard to the legality of posting comments about a specific

doctor in a public forum, you cannot be sued if you are only

stating facts.

Regards,

[Guest guest]

Dear ,

Thanks for your reply.

I can't help but wish, for patients that have had fusions, the

doctors would put aside a little of their concern for cost

effectiveness in favor of concern for our spines' future health

maintenance. Sorry if I wasn't clear -- I did not propose once a

year checkups, but I am wondering if some reasonable timeframe could

be established. Doing so might actually save $ (and of course pain

and suffering) in the long run.

I also think that in medicine, what is fact is not always clearcut.

loriann

[Guest guest]

Hi Loriann...

I don't think it's the doctors that set these policies. I'm fairly

certain that it's insurance companies. The doctors would

probably love it if we had to have yearly checkups, as that would

certainly mean more income from them. If we want to be

checked for any disease when we're asymptomatic, we should

expect to pay even higher insurance premiums.

I guess we're all different, but if I'm asymptomatic, I have no

desire to take the time to be seen by my scoliosis specialist.

And, I certainly don't want to have to undergo any unnecessary

x-rays.

Again, I do feel it's important that scoliosis specialists tell their

patients to come in if there's any new symptom.

Regards,

> Dear ,

>

> Thanks for your reply.

>

> I can't help but wish, for patients that have had fusions, the

> doctors would put aside a little of their concern for cost

> effectiveness in favor of concern for our spines' future health

> maintenance.

[Guest guest]

,

It's been interesting discussing all this with you and the group.

I'll spare you my lengthy tirade about insurance companies and health

care in general. Although I think our (USA) health system is vastly

better than a lot of countries, I still plan to carefully consider

the various candidates' views on health care come next election time.

Your feeling that it's important that scoliosis specialists tell

their patients to come in if there's any new symptom makes a lot of

sense to me.

But, I guess I've come back full circle in again commenting that it's

very unfortunate that many of the old Harrington Rod patients thought

they were " fixed " (Yes, I ackowledge that the doctors didn't/couldn't

know any better) and didn't have a clue that any new symptoms had a

good chance of being the beginning stages of a disabling condition.

And many didn't have an easy time getting good advice on what to do

about the symptoms and how to slow their progression.

Well, it would probably be wise of me to stop going in circles, huh?

Better for me to get off the computer and think about making a

doctor's appointment!

Thanks again for exploring all this with me,

loriann

[Guest guest]

Hi Loriann...

Unfortunately, it probably wouldn't change anything anyway. The

good specialists would do something about their patient's

reporting of symptoms, while the bad specialists would

apparently still tell their patients that their fusions look fine,

whether they came those patients go to the doctors on their own,

or because they had an annual appointment.

I don't know if there's a fix to this problem. It would be very

interesting to me, to hear, directly from one of these specialists,

why they are not responding to their patient's symptoms. The

information is definitely available to them. Could it be that they

know that they're not experienced in performing revision surgery

and don't want to admit that to their patients, and send them to

someone who does have the experience? It's hard to believe

that they don't know about the surgeons who do these surgeries.

Regards,

> But, I guess I've come back full circle in again commenting that

it's

> very unfortunate that many of the old Harrington Rod patients

thought

> they were " fixed " (Yes, I ackowledge that the doctors

didn't/couldn't

> know any better) and didn't have a clue that any new symptoms

had a

> good chance of being the beginning stages of a disabling

condition.

> And many didn't have an easy time getting good advice on what

to do

> about the symptoms and how to slow their progression.