Re: If i am reading correctly...

[Guest guest]

, I do see your point, that when flatback becomes a cause celebre, every gnome with a butcher knife (Carolyn P's colorful post-surgical expression!) will be hanging up a shingle as "flatback surgeon". Point VERY well taken. At least my overpaid twit of a physiatrist isn't doing any cutting or sawing.

It still totally stinks, though, that people with marked flatback, and in my case more than a decade of impairment (probably) from spina bifida, get treated so callously. Not everyone has internet service, and it always amazes me how many people WITH internet service never think to look up this sort of thing.

Sharon

[ ] Re: If i am reading correctly...

> Hi Sharon...> > I think you actually proved my point. You knew about flatback, but> you still didn't get the proper treatment. Your medical professional> either didn't know about it or for whatever reason, didn't diagnose> it. You only got treatment when you pushed.. the same thing anyone> with a lot of back pain would (or at least should) hopefully do. > > Lets assume that somehow, you could get the word out to everyone who> has Harrington rod(s). Most of them would probably go to the very> same surgeons who are not diagnosing flatback in the first place. Or,> if they did somehow manage to diagnose it, would you trust those same> surgeons to actually operate?> > I'd like to use a business associate of mine as an example. She was> the first person I ever met who had had surgery for her scoliosis. I> met her before I had my own surgery. She has Harrington rods> implanted by Harrington when she was a teenager. When I ask her> about it, she says she has some daily pain. I've always urged her to> see a specialist, but she keeps resisting. I'm fairly certain that> if/when her pain gets really bad, she'll seek help. Would it be of> any benefit to talk to her about flatback? I personally don't think so.> > I've thought many times of moving away from Northern California. I've> also thought about early retirement. The reason I don't do either is> that I want access to the best medical care. It's unfortunate in this> country, that we don't all have access to that same level of care.> > Again, just my $.02. :-) > > Regards,> > > > > >> >> >> > > >>> >> >> > > >> This is the part of the whole thing that angers me,> anyone>> >> >> who>> >> >> > has had>> >> >> > > >> Harrington Rods installed in them should be told of>> > Flatback>> >> >> by>> >> >> > the>> >> >> > > >> manufacturer, so they can get themselves checked by a>> >> >> reputable>> >> >> > doc>> >> >> > > > with>> >> >> > > >> experience. They have known since the eighties that> this>> >> >> > > > complication is>> >> >> > > >> possible, and alas, we have had to go it alone finding>> > doc's>> >> >> > that>> >> >> > > > have a>> >> >> > > >> clue whats going on. Lost years I'll never get back.>> >>> >>> >>> >>> >>> >>> > scoliosis veterans * flatback sufferers * revision candidates>> >

[Guest guest]

Good point, . Unfortunately, when everyone has access to the same level

of care, it's usually a pretty low level.

[ ] Re: If i am reading correctly...

> ---Sounds like we might be doing better than one of the gals on this

> board from Canada...how long did that poor girl wait for an appt.. a

> a few years????...i'll take our system anyday over that!! I wanted to

> cry for her!! I can;'t imagine..at least I had the choice after I

> found out what was wrong with me to make decisions as soon as I could

> and wanted to. I agree, if you do not have insurance, that is a

> problem but it does not sound like some of the " other " countries are

> doing much better....,PA

>

> In , " Racine " <linda@...> wrote:

>>

>> Hi Sharon...

>>

>> I think you actually proved my point. You knew about flatback, but

>> you still didn't get the proper treatment. Your medical

> professional

>> either didn't know about it or for whatever reason, didn't diagnose

>> it. You only got treatment when you pushed.. the same thing anyone

>> with a lot of back pain would (or at least should) hopefully do.

>>

>> Lets assume that somehow, you could get the word out to everyone who

>> has Harrington rod(s). Most of them would probably go to the very

>> same surgeons who are not diagnosing flatback in the first place.

> Or,

>> if they did somehow manage to diagnose it, would you trust those

> same

>> surgeons to actually operate?

>>

>> I'd like to use a business associate of mine as an example. She was

>> the first person I ever met who had had surgery for her scoliosis.

> I

>> met her before I had my own surgery. She has Harrington rods

>> implanted by Harrington when she was a teenager. When I ask

> her

>> about it, she says she has some daily pain. I've always urged her

> to

>> see a specialist, but she keeps resisting. I'm fairly certain that

>> if/when her pain gets really bad, she'll seek help. Would it be of

>> any benefit to talk to her about flatback? I personally don't

> think so.

>>

>> I've thought many times of moving away from Northern California.

> I've

>> also thought about early retirement. The reason I don't do either

> is

>> that I want access to the best medical care. It's unfortunate in

> this

>> country, that we don't all have access to that same level of care.

>>

>> Again, just my $.02. :-)

>>

>> Regards,

>>

>>

>>

>>

>>

>> > >> >> > > >

>> > >> >> > > >> This is the part of the whole thing that angers

> me,

>> anyone

>> > >> >> who

>> > >> >> > has had

>> > >> >> > > >> Harrington Rods installed in them should be told

> of

>> > > Flatback

>> > >> >> by

>> > >> >> > the

>> > >> >> > > >> manufacturer, so they can get themselves checked

> by a

>> > >> >> reputable

>> > >> >> > doc

>> > >> >> > > > with

>> > >> >> > > >> experience. They have known since the eighties

> that

>> this

>> > >> >> > > > complication is

>> > >> >> > > >> possible, and alas, we have had to go it alone

> finding

>> > > doc's

>> > >> >> > that

>> > >> >> > > > have a

>> > >> >> > > >> clue whats going on. Lost years I'll never get

> back.

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > > scoliosis veterans * flatback sufferers * revision candidates

>> > >

[Guest guest]

Hi,

I guess I am jumping in here a little late, but I think we all agree

that there is some missing link between what the leading revision

doctors now understand the " solution set " to be for us and whatever

the " state of the art " medical protocol was just 5-10 years ago when

many practicing orthos were in med school.

My personal suspicion is that most specialized doctors recognize

that this surgery is beyond their capabilities and it makes them

feel insecure....and so rather than admit that to a patient, they

just give you the " live with it " speech. Of course I could be

wrong....

If anything, it seems reasonable that the National Scoliois

Foundation would do an education piece on their own....they could

help educate the general orthopeadic surgeons (and even their own

members) as to what the key characteristics of fixed sagittal

imbalance are and help them to refer them to qualified help if they

themselves are not prepared to help. Many people only have trust in

their original surgeons and have had not contact with any scoli

specialists since their original surgeries. So it would be nice if

when contacting an old office when problems arise the answer

wasn't " we only see pediatric patients " ...but and acknowledgement

that they would get back to the patient with a qualified referral.

And of course NSF could place information on its website giving

recognition to the problem and some guidelines on what a patient

should do if the started experienceing problems and had a non

segmental rod (Harrington rod) installed in their spines.

I know not everyone has access to computers....but more and more

folks do. I know that is how I stumbled upon this life saving

information. So to and Ann and our other computer savvy

folks....how can we make sure that if the words " Harrington rod "

and " scoliosis " are typed into a search engine...this site comes out

near the top.....can we do that?

I think all's we can really do is spread the word ourselves. Its a

shame the major actors in this nightmare haven't stepped up, but

maybe they feel that isn't their role. What else can we do?

~Cam

[Guest guest]

Now I want to chime in too . . . I do wish more surgeons and

orthopedists had more information, and unlike others, I didn't get a

good 10 or 20 years. I'm sure if I hadn't had the surgery I'd be a lot

more deformed and worse off. But after the 1-2 years of recovery for

the initial surgery, I saw elements of the long term stuff I deal with

now already starting. I could say I got a good 5-6 years when I just

tried to ignore what was going on. But then I couldn't anymore, and

it's been a slow-ish progression ever since. I'd really have liked it

if doctors I went to during the whole first 15 years knew that what I

was experiencing was a possibility. But they didn't and I struggled to

find out anything until I went online to look about 3 years ago. And

now I know I have flatback and have great people to talk to and a list

of surgeons to talk to when I am ready to have surgery again.

Like others, I don't really blame the manufactor, or the initial

surgeon (who probably should have known better since my surgery was in

89). To his credit, he said he only fused T3-L4 in order to leave me

some mobility. But since the information has been around for a good 20

years now . . . I would think that orthopedists who deal with backs

ought to know about it and REFER OUT if you know you don't know what to

do. Drs have to do continuing ed too - should be brought up

occasionally. In my humble opinion.

Just my $0.02. :-)

Deb M.

>

> ---

> Bonnie,

> I am with you, without the surgery I might not be here..it was all

> they knew back then. But when it came to be a concern, it should have

> become a concern to all of us...not let us do this cat and mouse

> thing..trying to find out what the hell was wrong with us. I am not

> looking for any legal action just honesty and information. <PA

>

>

[Guest guest]

>

> My personal suspicion is that most specialized doctors recognize

> that this surgery is beyond their capabilities and it makes them

> feel insecure....and so rather than admit that to a patient, they

> just give you the " live with it " speech. Of course I could be

> wrong....

>

A very good friend of mine who is a physician told me the one thing

that bothers him about most of his colleagues is that instead of

just acknowledging they don't know how to treat something and

referring the patient they give no treatment options at all.

I always try to give the benefit of the doubt before suggesting

anything because I want to get an opinion not give one. This is hard

when I have run into so many of those " I don't know about it so you

must not have it " doctors.

Jolynn

[Guest guest]

I agree with Cam. My high school's motto was " knowledge is power " , and I

firmly believe that it is better to know too much than too little. I like

the fact that my chinchilla's vet warned me that males are prone to

testicular cancer. This gives me the ability to keep an eye on him so that

I may get medical attention early-on if he begins to get a tumor.

If I had known in my 20's - 30's about the possible future problems I could

encounter with my scoliosis and spina bifida (or even knew I had spina

bifida!!), my life could have followed a very different course, and I might

have had a clue who to turn to when I began to have trouble walking at age

30!

I am thankful that five+ years ago the first websites I looked at when

seeking Harrington rod information did include information on flatback. I

vaguely remember " Scoliosis World " , and Suzi's (former) " Surgically Treated

Scoliosis " , and then " Salvaged Sisters " . I remember a distinct absense of

any flatback information on the SRS site, and I have checked every so often,

and found the situation there has not changed. Any general scoliosis site

that is not exclusively for pediatric and pre-surgical patients, in other

words, any site that may attract adults with old fusions, should offer easy

access to information regarding the possibilities of flatback and

accelerated degenerative changes in the non-fused spine segments. Links to

the flatback forums would be a plus.

That's my 3 cents.

(Inflation, you know)

Sharon

[ ] Re: If i am reading correctly...

> And of course NSF could place information on its website giving

> recognition to the problem and some guidelines on what a patient

> should do if the started experienceing problems and had a non

> segmental rod (Harrington rod) installed in their spines.

>

> I know not everyone has access to computers....but more and more

> folks do. I know that is how I stumbled upon this life saving

> information. So to and Ann and our other computer savvy

> folks....how can we make sure that if the words " Harrington rod "

> and " scoliosis " are typed into a search engine...this site comes out

> near the top.....can we do that?

>

> I think all's we can really do is spread the word ourselves. Its a

> shame the major actors in this nightmare haven't stepped up, but

> maybe they feel that isn't their role. What else can we do?

>

> ~Cam

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Here in the UK we have SAUK as our primary scoliosis charity. They have been asked on numerous occasions by people I know to do an article on flatback, and the long term potential complications of Harrington rod surgery for their quarterly magazine. They've been asked to do generic articles on sagittal imbalance, which would cover Scheuermanns as well as just even a mention that it's possible to become imbalanced secondary to surgery. People have offered to write patient perspective articles - for heavens sake, they have articles such as the ones written by a young woman who has had Schroth treatment in Spain and claims, with a complete absence of xrays, to have permanently reduced her curves by 50%. But they're just not interested in long term problems. They don't want to publicise them, and don't see it as their place or responsibility to try to support people who have those long term problems, or even acknowledge their existence. There are times when it really does feel like we are a dirty secret that everyone is trying to hide.

My idiot knew perfectly well about flatback and declared that this was why he would *not* do harrington rods for me as they would doom me to a life of increasing pain and disability and another massive surgery within 10-15 years. So he used segmental hardware, fused me anterior as well, and managed to go one better - rather than a flat, posterior fused back, I was given an anterior and posterior fused kyphosis. Which he discharged me from care without mentioning to me. That was done when I was just short of 21, and by the time I started working at Amnesty just a little after I turned 27 I was already having significant difficulty walking. It's only thanks to the fact that I had internet access and through dint of much searching stumbled across Salvaged Sisters that I found out what was wrong with me - which was then denied by every medical professional I knew (my family is full of various kinds of them) as a possibility. It was thanks to the MIT list that I learned the names of good doctors in the US, and I searched until I found email addresses in the public domain for several of them. One was kind enough to reply - Dr Hu - and she told me about Mr Morley at RNOH and Mr Webb at QMC. I was able to find an email address for Mr Webb, he advised me to see him based on the information I was able to give him and I paid for a private consultation as the NHS would not cover me to be seen out of area, so I could not be directly referred there as an NHS patient. But he was able to transfer me to his NHS list once I had seen him. One of the GPs in my local practice did his level best to screw things up because he thought it was utterly unreasonable that I should go out of area, and that if I did it should be to be sent back to the idiot. I expect that many people are being sent back to their own particular idiots, but one thing I can assure you of is that SAUK do not care.

titch-- " The older I grow the more I distrust the familiar doctrine that age brings wisdom. " - H. L. Mencken

[Guest guest]

I just want to say that within the SRS forum has done a

terrific job of pasting a link to our group for anyone who posts

there who appears to have the symptoms consistent with flatback. I

know the forum is separated into those seeking information about

revision, but the content of that group can range from those a year

out of surgery to those with full blown flatback....so I thank

for helping direct people to our group.

I take it as a testiment that we actually have a group that offers

good information and support for those with our particular malady.

The SRS has their own ethical dilemma to deal with....should they

scare the daylights out of those seeking primary surgery by allowing

them to think of the possibility that within 20 years the

information changed and lead us to our current condition?

Thankfully, we do not have to answer that question.

I hope that the day will come when doctors recognize that internet

support is a " must " when you have a poplulation of patients as

widely flung as we are, facing a lifetime of pain or grueling

surgery with 1+ years of recovery. Geez, if I had Parkinsons I could

go to the local hospital and find people like me that could share

the agony and the support of that condition....how wonderful. Do we

deserve or need anything less? Clearly the medical community

recognizes the " mental health " aspect of dealing with disease and

pain...it stands to reason that we need the same support. So reach

around an pat yourseelves on the back (or rod!) and know that you

have done something good here.

All we can do is the best we can do....have a site/group that puts

out good information and support. I do think we could work out a way

to improve the number of " internet hits " for people searching for

answers...and that would make me feel like we had done more in

education than many of the docs....and so be it. Many years ago my

therapist taught me to remember that I can only control my own

actions and behavior...what others do (doctors and the medical

community in general) is their choice...

I (we) choose to spread the word about this monster...and I hope we

will continue to do it to the best ouf our abilities. I know I could

not have gotten through this last year without the wisdom and

support of all of you and I thank you for it.

Love ya all, Cam

[Guest guest]

---Oh, Sharon I agree...that was kind of what I was trying to say but

was not good at doing it...low level of care..when all hae access to

the same care...exactly!!!!,PA

In , " Sharon Green "

<sharon.green18@...> wrote:

>

> Good point, . Unfortunately, when everyone has access to the

same level

> of care, it's usually a pretty low level.

>

>

> [ ] Re: If i am reading correctly...

>

>

> > ---Sounds like we might be doing better than one of the gals on

this

> > board from Canada...how long did that poor girl wait for an

appt.. a

> > a few years????...i'll take our system anyday over that!! I

wanted to

> > cry for her!! I can;'t imagine..at least I had the choice after I

> > found out what was wrong with me to make decisions as soon as I

could

> > and wanted to. I agree, if you do not have insurance, that is a

> > problem but it does not sound like some of the " other " countries

are

> > doing much better....,PA

> >

> > In , " Racine " <linda@>

wrote:

> >>

> >> Hi Sharon...

> >>

> >> I think you actually proved my point. You knew about flatback,

but

> >> you still didn't get the proper treatment. Your medical

> > professional

> >> either didn't know about it or for whatever reason, didn't

diagnose

> >> it. You only got treatment when you pushed.. the same thing

anyone

> >> with a lot of back pain would (or at least should) hopefully do.

> >>

> >> Lets assume that somehow, you could get the word out to everyone

who

> >> has Harrington rod(s). Most of them would probably go to the

very

> >> same surgeons who are not diagnosing flatback in the first place.

> > Or,

> >> if they did somehow manage to diagnose it, would you trust those

> > same

> >> surgeons to actually operate?

> >>

> >> I'd like to use a business associate of mine as an example. She

was

> >> the first person I ever met who had had surgery for her

scoliosis.

> > I

> >> met her before I had my own surgery. She has Harrington rods

> >> implanted by Harrington when she was a teenager. When I ask

> > her

> >> about it, she says she has some daily pain. I've always urged

her

> > to

> >> see a specialist, but she keeps resisting. I'm fairly certain

that

> >> if/when her pain gets really bad, she'll seek help. Would it be

of

> >> any benefit to talk to her about flatback? I personally don't

> > think so.

> >>

> >> I've thought many times of moving away from Northern California.

> > I've

> >> also thought about early retirement. The reason I don't do

either

> > is

> >> that I want access to the best medical care. It's unfortunate in

> > this

> >> country, that we don't all have access to that same level of

care.

> >>

> >> Again, just my $.02. :-)

> >>

> >> Regards,

> >>

> >>

> >>

> >>

> >>

> >> > >> >> > > >

> >> > >> >> > > >> This is the part of the whole thing that

angers

> > me,

> >> anyone

> >> > >> >> who

> >> > >> >> > has had

> >> > >> >> > > >> Harrington Rods installed in them should be

told

> > of

> >> > > Flatback

> >> > >> >> by

> >> > >> >> > the

> >> > >> >> > > >> manufacturer, so they can get themselves

checked

> > by a

> >> > >> >> reputable

> >> > >> >> > doc

> >> > >> >> > > > with

> >> > >> >> > > >> experience. They have known since the eighties

> > that

> >> this

> >> > >> >> > > > complication is

> >> > >> >> > > >> possible, and alas, we have had to go it alone

> > finding

> >> > > doc's

> >> > >> >> > that

> >> > >> >> > > > have a

> >> > >> >> > > >> clue whats going on. Lost years I'll never get

> > back.

> >> > >

> >> > >

> >> > >

> >> > >

> >> > >

> >> > >

> >> > > scoliosis veterans * flatback sufferers * revision candidates

> >> > >

[Guest guest]

Hi Cam...

Both the NSF and SAI have published articles on flatback. It would be

interesting to hear if they had any amount of response from patients

after publication.

As you know, the Scoliosis Research Society has an annual meeting.

While many of the attendees are the top scoliosis specialists, there

are other scoliosis specialists as well as non-deformity spine

surgeons and general orthopaedists in attendance. I don't think I've

ever been to one where at least a few papers on flatback are

presented. Those same papers are usually published in Spine Magazine.

I agree that there seem to be some doctors who know about the

problems, but rather than admit that treatment is beyond their

capabilities, they simply tell their patients that they have to live

with it. I doubt anyone would ever have the time and resources to sue

one of these doctors successfully, but that would certainly send a

message to them that what they're doing to patients is unacceptable.

Regards,

>

> Hi,

>

> I guess I am jumping in here a little late, but I think we all agree

> that there is some missing link between what the leading revision

> doctors now understand the " solution set " to be for us and whatever

> the " state of the art " medical protocol was just 5-10 years ago when

> many practicing orthos were in med school.

>

> My personal suspicion is that most specialized doctors recognize

> that this surgery is beyond their capabilities and it makes them

> feel insecure....and so rather than admit that to a patient, they

> just give you the " live with it " speech. Of course I could be

> wrong....

>

> If anything, it seems reasonable that the National Scoliois

> Foundation would do an education piece on their own....they could

> help educate the general orthopeadic surgeons (and even their own

> members) as to what the key characteristics of fixed sagittal

> imbalance are and help them to refer them to qualified help if they

> themselves are not prepared to help. Many people only have trust in

> their original surgeons and have had not contact with any scoli

> specialists since their original surgeries. So it would be nice if

> when contacting an old office when problems arise the answer

> wasn't " we only see pediatric patients " ...but and acknowledgement

> that they would get back to the patient with a qualified referral.

>

> And of course NSF could place information on its website giving

> recognition to the problem and some guidelines on what a patient

> should do if the started experienceing problems and had a non

> segmental rod (Harrington rod) installed in their spines.

>

> I know not everyone has access to computers....but more and more

> folks do. I know that is how I stumbled upon this life saving

> information. So to and Ann and our other computer savvy

> folks....how can we make sure that if the words " Harrington rod "

> and " scoliosis " are typed into a search engine...this site comes out

> near the top.....can we do that?

>

> I think all's we can really do is spread the word ourselves. Its a

> shame the major actors in this nightmare haven't stepped up, but

> maybe they feel that isn't their role. What else can we do?

>

> ~Cam

>

[Guest guest]

Hi Sharon...

I heard from the doctor who is in charge of the patient information on

the SRS website that they plan to redo the website. I agree that they

could do a much better job, but we need to remember that the SRS is

really in place to educate other medical professionals (which they do

at their annual meetings, and through funding studies, etc.).

And, as you know, there are better sources of flatback information on

the internet anyway. :-)

Regards,

>

> I agree with Cam. My high school's motto was " knowledge is power " ,

and I

> firmly believe that it is better to know too much than too little.

I like

> the fact that my chinchilla's vet warned me that males are prone to

> testicular cancer. This gives me the ability to keep an eye on him

so that

> I may get medical attention early-on if he begins to get a tumor.

>

> If I had known in my 20's - 30's about the possible future problems

I could

> encounter with my scoliosis and spina bifida (or even knew I had spina

> bifida!!), my life could have followed a very different course, and

I might

> have had a clue who to turn to when I began to have trouble walking

at age

> 30!

>

> I am thankful that five+ years ago the first websites I looked at when

> seeking Harrington rod information did include information on

flatback. I

> vaguely remember " Scoliosis World " , and Suzi's (former) " Surgically

Treated

> Scoliosis " , and then " Salvaged Sisters " . I remember a distinct

absense of

> any flatback information on the SRS site, and I have checked every

so often,

> and found the situation there has not changed. Any general

scoliosis site

> that is not exclusively for pediatric and pre-surgical patients, in

other

> words, any site that may attract adults with old fusions, should

offer easy

> access to information regarding the possibilities of flatback and

> accelerated degenerative changes in the non-fused spine segments.

Links to

> the flatback forums would be a plus.

>

> That's my 3 cents.

>

> (Inflation, you know)

>

> Sharon

>

>

> [ ] Re: If i am reading correctly...

>

> > And of course NSF could place information on its website giving

> > recognition to the problem and some guidelines on what a patient

> > should do if the started experienceing problems and had a non

> > segmental rod (Harrington rod) installed in their spines.

> >

> > I know not everyone has access to computers....but more and more

> > folks do. I know that is how I stumbled upon this life saving

> > information. So to and Ann and our other computer savvy

> > folks....how can we make sure that if the words " Harrington rod "

> > and " scoliosis " are typed into a search engine...this site comes out

> > near the top.....can we do that?

> >

> > I think all's we can really do is spread the word ourselves. Its a

> > shame the major actors in this nightmare haven't stepped up, but

> > maybe they feel that isn't their role. What else can we do?

> >

> > ~Cam

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

Hi Cam...

I assume you mean the NSF (National Scoliosis Foundation) as opposed

to the SRS (Scoliosis Research Society).

--L

>

> I just want to say that within the SRS forum has done a

> terrific job of pasting a link to our group for anyone who posts

> there who appears to have the symptoms consistent with flatback. I

> know the forum is separated into those seeking information about

> revision, but the content of that group can range from those a year

> out of surgery to those with full blown flatback....so I thank

> for helping direct people to our group.

>

> I take it as a testiment that we actually have a group that offers

> good information and support for those with our particular malady.

> The SRS has their own ethical dilemma to deal with....should they

> scare the daylights out of those seeking primary surgery by allowing

> them to think of the possibility that within 20 years the

> information changed and lead us to our current condition?

> Thankfully, we do not have to answer that question.

>

> I hope that the day will come when doctors recognize that internet

> support is a " must " when you have a poplulation of patients as

> widely flung as we are, facing a lifetime of pain or grueling

> surgery with 1+ years of recovery. Geez, if I had Parkinsons I could

> go to the local hospital and find people like me that could share

> the agony and the support of that condition....how wonderful. Do we

> deserve or need anything less? Clearly the medical community

> recognizes the " mental health " aspect of dealing with disease and

> pain...it stands to reason that we need the same support. So reach

> around an pat yourseelves on the back (or rod!) and know that you

> have done something good here.

>

> All we can do is the best we can do....have a site/group that puts

> out good information and support. I do think we could work out a way

> to improve the number of " internet hits " for people searching for

> answers...and that would make me feel like we had done more in

> education than many of the docs....and so be it. Many years ago my

> therapist taught me to remember that I can only control my own

> actions and behavior...what others do (doctors and the medical

> community in general) is their choice...

>

> I (we) choose to spread the word about this monster...and I hope we

> will continue to do it to the best ouf our abilities. I know I could

> not have gotten through this last year without the wisdom and

> support of all of you and I thank you for it.

>

> Love ya all, Cam

>

[Guest guest]

Hey ,

When you say " Both the NSF and SAI have published articles on

flatback do you mean these are publications that go out to the

general population in a newletter type form? Obviously, I am not a

subscriber!

Any yes, it would be interesting to see if there was any " uptick " in

activity after publication. My suspicion is that anyone that is

getting those newletters may actually be pretty aware of the

implications of their surgery, kind of " self-selected " if you know

what I mean? I was just the run of the mill internet user starting

to wonder if something was amiss when I conducted a search and found

the Mina site...it didn't take long after that to put two

and two together....

It is unfortunate the not all doctors seem to be on board, whatever

their reasons...and it may be that they have scared themselves or

seen bad outcomes that make the hesitate to recommend surgery...but

as always, an informed consumer seems like the answer. So we just

keep plodding along!

~Cam

[Guest guest]

....got me twice...UCLA/UCSF and NSF/SRS...maybe I should be

evaluated for Altzheimers....or what was that disease.....???! Cam

[Guest guest]

Yes, . I guess its absense just rubbed me the wrong way, after my *(sarcasm)* favorite highly-placed spine specialist physiatrist asked me how I had heard of flatback, and when I replied "the internet", he said, "You mean, like, the SRS website?" I had already seen that the SRS site had nada to say about flatback, so I demurely replied "something like that". Better to let him think I self-diagnosed based on something written by his esteemed colleagues, than (gasp), a patient!

:^)

Sharon

[ ] Re: If i am reading correctly...>> >> > And of course NSF could place information on its website giving>> > recognition to the problem and some guidelines on what a patient>> > should do if the started experienceing problems and had a non>> > segmental rod (Harrington rod) installed in their spines.>> >>> > I know not everyone has access to computers....but more and more>> > folks do. I know that is how I stumbled upon this life saving>> > information. So to and Ann and our other computer savvy>> > folks....how can we make sure that if the words "Harrington rod">> > and "scoliosis" are typed into a search engine...this site comes out>> > near the top.....can we do that?>> >>> > I think all's we can really do is spread the word ourselves. Its a>> > shame the major actors in this nightmare haven't stepped up, but>> > maybe they feel that isn't their role. What else can we do?>> >>> > ~Cam>> >>> >>> >>> >>> >>> >>> > scoliosis veterans * flatback sufferers * revision candidates>> >

[Guest guest]

BTW, in fairness I should mention that I learned quite a bit from the SRS site's page on congenital scoliosis.

[ ] Re: If i am reading correctly...>> >> > And of course NSF could place information on its website giving>> > recognition to the problem and some guidelines on what a patient>> > should do if the started experienceing problems and had a non>> > segmental rod (Harrington rod) installed in their spines.>> >>> > I know not everyone has access to computers....but more and more>> > folks do. I know that is how I stumbled upon this life saving>> > information. So to and Ann and our other computer savvy>> > folks....how can we make sure that if the words "Harrington rod">> > and "scoliosis" are typed into a search engine...this site comes out>> > near the top.....can we do that?>> >>> > I think all's we can really do is spread the word ourselves. Its a>> > shame the major actors in this nightmare haven't stepped up, but>> > maybe they feel that isn't their role. What else can we do?>> >>> > ~Cam>> >>> >>> >>> >>> >>> >>> > scoliosis veterans * flatback sufferers * revision candidates>> >

[Guest guest]

Hi Cam...

Yes, both organizations published flatback articles. Here's the NSFs:

http://www.scoliosis.org/resources/medicalupdates/flatback.php

The SAI doesn't currently have articles from BackTalk online.

--

>

> Hey ,

>

> When you say " Both the NSF and SAI have published articles on

> flatback do you mean these are publications that go out to the

> general population in a newletter type form? Obviously, I am not a

> subscriber!

>

> Any yes, it would be interesting to see if there was any " uptick " in

> activity after publication. My suspicion is that anyone that is

> getting those newletters may actually be pretty aware of the

> implications of their surgery, kind of " self-selected " if you know

> what I mean? I was just the run of the mill internet user starting

> to wonder if something was amiss when I conducted a search and found

> the Mina site...it didn't take long after that to put two

> and two together....

>

> It is unfortunate the not all doctors seem to be on board, whatever

> their reasons...and it may be that they have scared themselves or

> seen bad outcomes that make the hesitate to recommend surgery...but

> as always, an informed consumer seems like the answer. So we just

> keep plodding along!

>

> ~Cam

>

[Guest guest]

Me too!

>

> ....got me twice...UCLA/UCSF and NSF/SRS...maybe I should be

> evaluated for Altzheimers....or what was that disease.....???! Cam

>

[Guest guest]

Again, each country is different but Canada's level of care is by no means low level. I have friends that have dual citizenship and they feel Canada's level of care is the same, if not higher, than what they have received in the States. The main difference was that they had to pay a lot more in the States than they did in Canada, up front. In Canada, most of the payments for medical is through our income tax so it appears to be free. Again, most of the discontent in Canada is more on the political lines where the money is not being transferred probably from the federal level to the provincial level. Plus we do pay premiums for our medical insurance and we can pay extra for the extended level of insurance. Those that can not pay for the basic premiums, still get medical services at the same quality of care, because of the payments through income tax. Maybe, in the States, those that can not afford insurance get a lower level of care, which is where the assumption for Canada's medical system comes from.

I have not been able to verify, but I have heard that there is one European country that puts any North American medical system to shame and everyone has the same access to it. Mind you, the income tax is higher than any in North America, too.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of heatherbenjaminnicholasSent: March 5, 2006 7:53 AM Subject: [ ] Re: If i am reading correctly...---Oh, Sharon I agree...that was kind of what I was trying to say but was not good at doing it...low level of care..when all hae access to the same care...exactly!!!!,PAIn , "Sharon Green" <sharon.green18@...> wrote:>> Good point, . Unfortunately, when everyone has access to the same level > of care, it's usually a pretty low level.> > > [ ] Re: If i am reading correctly...> > > > ---Sounds like we might be doing better than one of the gals on this> > board from Canada...how long did that poor girl wait for an appt.. a> > a few years????...i'll take our system anyday over that!! I wanted to> > cry for her!! I can;'t imagine..at least I had the choice after I> > found out what was wrong with me to make decisions as soon as I could> > and wanted to. I agree, if you do not have insurance, that is a> > problem but it does not sound like some of the "other" countries are> > doing much better....,PA> >> > In , " Racine" <linda@> wrote:> >>> >> Hi Sharon...> >>> >> I think you actually proved my point. You knew about flatback, but> >> you still didn't get the proper treatment. Your medical> > professional> >> either didn't know about it or for whatever reason, didn't diagnose> >> it. You only got treatment when you pushed.. the same thing anyone> >> with a lot of back pain would (or at least should) hopefully do.> >>> >> Lets assume that somehow, you could get the word out to everyone who> >> has Harrington rod(s). Most of them would probably go to the very> >> same surgeons who are not diagnosing flatback in the first place.> > Or,> >> if they did somehow manage to diagnose it, would you trust those> > same> >> surgeons to actually operate?> >>> >> I'd like to use a business associate of mine as an example. She was> >> the first person I ever met who had had surgery for her scoliosis.> > I> >> met her before I had my own surgery. She has Harrington rods> >> implanted by Harrington when she was a teenager. When I ask> > her> >> about it, she says she has some daily pain. I've always urged her> > to> >> see a specialist, but she keeps resisting. I'm fairly certain that> >> if/when her pain gets really bad, she'll seek help. Would it be of> >> any benefit to talk to her about flatback? I personally don't> > think so.> >>> >> I've thought many times of moving away from Northern California.> > I've> >> also thought about early retirement. The reason I don't do either> > is> >> that I want access to the best medical care. It's unfortunate in> > this> >> country, that we don't all have access to that same level of care.> >>> >> Again, just my $.02. :-)> >>> >> Regards,> >> > >>> >>> >>> >> > >> > >> >> > > >> >> > >> >> > > >> This is the part of the whole thing that angers> > me,> >> anyone> >> > >> >> who> >> > >> >> > has had> >> > >> >> > > >> Harrington Rods installed in them should be told> > of> >> > > Flatback> >> > >> >> by> >> > >> >> > the> >> > >> >> > > >> manufacturer, so they can get themselves checked> > by a> >> > >> >> reputable> >> > >> >> > doc> >> > >> >> > > > with> >> > >> >> > > >> experience. They have known since the eighties> > that> >> this> >> > >> >> > > > complication is> >> > >> >> > > >> possible, and alas, we have had to go it alone> > finding> >> > > doc's> >> > >> >> > that> >> > >> >> > > > have a> >> > >> >> > > >> clue whats going on. Lost years I'll never get> > back.> >> > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > > scoliosis veterans * flatback sufferers * revision candidates> >> > >