recommendations New York City

[bob glaudini]

I'm looking for any recomendations for health care providers, non surgical Orthopedists, physical therapists, yoga teachers in New York City. I've a fifteen year old daughter with 55% curve. I want to explore all options.

BobG

[Jacque's Mom]

BobG, I've listed the Yoga Site that is in mid-town Manhattan, 42nd & 5th. I have been e-mailing them about my back and I plan to start Yoga there. They were recommended by the company I work for. Look at their site, very impressive.

http://www.yogasutranyc.com

I would also recommend you look into The Alexander Technique. I practice that faithfully and feel it has helped me tremendously. There are many AT teachers in New York City. My teacher, only practices in NJ now (good for me as I live in NJ and is able to continue with her). Here's a site that explains what it's about.

http://www.alexandertech.net

Good luck with your daughter. LYNN

[bob glaudini]

Jacque's mom;

Thanks for your tips. Looking into your suggestions. Have you heard of any teen support groups in NYC?

Bob

[Jacque's Mom]

Bob, I don't know of any teen groups but perhaps Linda Racine might know. If she does, I'm sure she will post for you. Is your daughter in any pain? Hope all goes well. LYNN

[bob glaudini]

JACQUE'S MOM

No pain, discomfort after walking for a long time.

B

[lrmb]

Hi Bob, I just saw your post. There is a practitioner of Pneumex outside New York in New Jersey. Pneumex is something like physical therapy and traction put together; I consulted the New Jersey guy and he had a lot of teenagers in there and claimed to have had good results. (Not sure if this was with less than 55, which is quite large as you know.) You can look up info on the Pneumex website, or search things I've written here elsewhere using the search engine at the top of the page. I'd be interested to know what happens, if you follow this up. I was in Philadelphia and it was too far to travel, but I really wanted to continue myself. All the best. Laura

[Karen Ocker]

I read the pneumex and understand medical lingo. I am not impressed. Might be a scam as far as I am concerned playing on the fears of desperate parents.

Some studies cited were for spinal cord injuries and PT. The scoliosis "studies" do not show before and after x-rays and I am not sure about the curve severities because they talk about degrees of "shift". Also curve "corrections" are not shown to be followed up with X-rays for a time to see if correction is maintained. I saw many treatment dropouts.

Chiropractic has NEVER been shown in any studies to correct curves, prevent progression in any permanent way. I had personal experience with that in the 6th grade.

One practitioner's link in my state NJ, says it is not chiropractic but most of the practitioners are chiropractors so what are they practicing? Other practitioners are physical therapists or have no degree after their names.

Physical Therapy(PT) does help muscle strength and improve posture but
not correct significant curves PERMANENTLY.

The cost can run $5,000-they say med ins can cover "portions" of the treatment depending on the policy.
Buyer beware.

Karen

[lrmb]

Hi Karen! I followed Pneumex up for myself less on the basis of the publicity and more because I spoke to three separate practitioners who claimed separately to have the same (good) results - one was a chiro and two were PTs, one in NJ (who actually had a PT administer the session), one is Baltimore, and one in LA. I wrote this up elsewhere on this site. There are a lot of scams around, I know; from what I saw and heard, my impression was that Pneumex might best stand a chance of helping teens with moderate (not severe) curves. Take care. I always enjoy reading your posts on the site. Laura

[sitoutturn]

Well i travel to eastern Europe to see a Back specialist he works with scoliosis and moves the bones in your back and goes all the way down to your feet. i did this when i was in 8th grade he had fixed my back but i grew taller and scoliosis came back but this guy had fixed my back in 2 weeks. My degree is 47 and they want surgury if it gets to 50 but i gotta pay my Doc a visit soon i got till feburary.

[LindaRacine]

Try Dr.Robert Berry @ (607) 535-7080
Please note that this person is a chiropractor.

[janmossphysio]

Has anyone tried Postural Reconstruction?

[gerbo]

Has anyone tried Postural Reconstruction?

what is it??

gerbo

[jshannon]

Has anyone tried Postural Reconstruction?
My wife and I found a physical therapist in Montreal QUEBEC who is trained in postural reconstruction. We were taking our then 12 year old daughter from our home in New Jersey to Montreal about every weekend for 9 months in 2005. Unfortunately, finances prevented us from continuing, but her scoliosis was improving. Postural Reconstruction is based on a method developed by Francoise Mezieres and it is now taught at the University of Strasbourg in their medical school as I recall. My nephew was treated with Postural Reconstruction in Rome Italy where he grew up and he also benefited from treatment for his scoliosis. We would have gone to someone in the US but there is no one we could find who is certified in Postural Reconstruction in this country except for one therapist who was practicing on the West Coast.

[Karen Ocker]

Did the good results obtained in your daughter and nephew remain? In other words were they permanent or did the curves come back?

One problem with alternative means is lack of permanent results. Otherwise we would have a revolution in scoliosis care and the insurance companies would pay.

Also practitioners around the world should duplicate these great results and demonstrate their permanence.

I get very suspicious when individual groups/practitioners get good short-term (a few weeks/months) results touting THE ANSWER. Often it is very expensive and cannot prove long term(years) correction/stabilization of significant curves.

If they CAN prove this why are they keeping the secret to themselves and not publishing(NOT ADVERTISING) it around the world to benefit others???!!

[jshannon]

My nephew did not relapse and had a long (almost 2 year) treatment. My daughter's has and unfortunately, we were not able to afford the trips to Montreal to continue treatment.

It is true that there are many questionable treatments for scoliosis as there are for many other disorders and diseases. Some treatments may work for some people and not for others. No doctor knows why bracing seems to work half the time and fails the other half of the time which begs the question of whether it actually does anything the other half of the time or it is just coincidental that the patient is wearing one and improves.

The reason there has been no revolution in scoliosis treatment is the same reason that there has been no revolution in healthcare. If physical therapists could successfully treat scoliosis even 1/3 of the time, then surgeons and hospitals would have that much less to do and bill us for.

[green m&m]

You know... I think some people who continually say those in healthcare industry are only out for their own good have had terrible doctors and didn't know how to advocate for themselves. This isn’t directed at anyone, I’m really just ranting. I sometimes find it upsetting since I am in a healthcare industry… no direct patient contact, but what I do is for patient and medical education amongst other things. The doctors/health care providers that are only in it for the money I think, are few and far in between but since they get more lip, people get the idea that the healthcare industry is mostly out for their own gain. Actually, I know a current student at my alma matter who quit her abdominal surgery practice due to rising cost of overhead, liability insurance ect. she just wasn't getting enough income for her to keep her practice open.

Maybe it is hard to make a concrete treatment protocol for scoliosis is due to scoliosis being so varied in presentation and progression in each person. It's not clean cut like where if you replace a missing enzyme, you are cured. Same goes for any trials for treatment, there’s only a small time frame in which someone with scoliosis can opt for non-surgical treatment, if you miss the window of opportunity, and it’s not coming back. So naturally most people would try something that HAS been proven to work in the past.

jshannon -- What kind of revolution in healthcare are you looking for? I see changes in medicine all the time, medicine is not and never has been stagnant.

[LindaRacine]

Hi Green...

This is one of my favorite topics.

I guess I've been blessed. Of the many physicians I've seen professionally or known in my lifetime, I really think only one was in it for the money. And, I have a nephew in medical school. I see how hard he's working, and I know his heart, and I wonder if he'll ever even make enough money to pay off all of his student loans.

Karen's post above, is to me, right on. I see an awful lot of claims that these various alternative treatments work, but I've yet to see one published study proving anything. At least the traditional medical community publishes their results.... good or bad.

I do understand that there are a lot of desperate people trying to avoid surgery. And, I sure hope that someone, somehow, some day, comes up with a way to keep anyone from ever having to have scoliosis surgery. If someone is REALLY motivated to avoid surgery, I'd recommend trying Elise Miller's "Yoga for Scoliosis." (http://www.yogaforscoliosis.com) This is the one treatment that is relatively inexpensive, and for which I've actually seen results. It's not going to permanently reduce one's curves (no non-surgical treatment has ever been proven to do that. It might, however, help someone avoid surgery.

Regards,
Linda

[sportsdoc]

wow...linda...slow down..you are actually making recommendation on a procedure with no study whatsoever? I hope you are not basing your recommendation on anecdotal cases...afterall..you are very much against that aren't you???

[LindaRacine]

I know you're trying to bait me. I wouldn't do that if I were you.

If/when someone shows me real anecdotal evidence that a therapy works to reduce curves, I'll be happy to talk about it. I've seen Elise Miller's before and after xrays. I believe that if she ever stops exercising for more than a day or two, her curve will return to at least it's original degree.

My only problem with alternative therapies is that their practitioners usually seem to have the need to lie about the results.

--Linda

[sportsdoc]

I know you're trying to bait me. I wouldn't do that if I were you.

If/when someone shows me real anecdotal evidence that a therapy works to reduce curves, I'll be happy to talk about it. I've seen Elise Miller's before and after xrays. I believe that if she ever stops exercising for more than a day or two, her curve will return to at least it's original degree.

My only problem with alternative therapies is that their practitioners usually seem to have the need to lie about the results.

--Linda

Is entire life a battle for you? don't worry I don't think of you as fish..would never try to bait you...

anyway..so you feel after correction is achieved some type of maintenance care is recommended even in miller's protocol..however, if a chiropractor told patients they need maintenence care, it's somehow different from this exercise program you are pushing??

You can either be 'scientific' or not...let's at least try to be honest when we are biased...as hard as it is for one to see oneself...at your age I'd think you'd have overcome that...

[LindaRacine]

Yes, I'm saying that SHOULD a chiropractor ever prove that he can permanently reduce a structural scoliosis curve, then that person would also have to continue treatment for the rest of their lives if they want to maintain the correction.

[LindaRacine]

[QUOTE=sportsdoc
You can either be 'scientific' or not...let's at least try to be honest when we are biased...as hard as it is for one to see oneself...at your age I'd think you'd have overcome that...[/QUOTE]
I guess we could say the same thing about you. You can either be unscientific or not. From a post you made in another thread yesterday, you seem to think that the Migun Thermal Massage Bed is fairy dust, but as far as I can tell, they have exactly the same amount of proof that their treatment works as you do... ZERO.

We're all a little biased.

--Linda

[sportsdoc]

let's not get too emotional..that's what teenagers do...
as far as scoliosis treatment goes, I understand more studies are needed..
as far as efficacy of treatment in other spine conditions...I could give you tons of studies on how effective chirorpactic has been compared to any conventional methods...

Linda...I don't know what your peeve is...I just came from spine symposium put on by prominent spine surgeons in CA and they all agree in complicated low back pain, they'd try chirorpactic first...we don't have to prove anything..it's already proven to be the most effective treatment study after study...it's track records are safer than over the counter headache medicines.....do your study...your hatred on chiropractoc doesn't stop on scoliosis...you seem to distrust the whole profession in general...your source of information is quackwatch..there's a scientific resource for everyone lol..

Your life seems to revolve around scoliosis and your surgeons...get out and have a life...if your surgery was so successful, you should be able to lead a normal life and get on with it...I'm sure your surgeons would appreciate that also if they really cared about you...

[LindaRacine]

let's not get too emotional..that's what teenagers do...
as far as scoliosis treatment goes, I understand more studies are needed..
as far as efficacy of treatment in other spine conditions...I could give you tons of studies on how effective chirorpactic has been compared to any conventional methods...

Linda...I don't know what your peeve is...I just came from spine symposium put on by prominent spine surgeons in CA and they all agree in complicated low back pain, they'd try chirorpactic first...we don't have to prove anything..it's already proven to be the most effective treatment study after study...it's track records are safer than over the counter headache medicines.....do your study...your hatred on chiropractoc doesn't stop on scoliosis...you seem to distrust the whole profession in general...your source of information is quackwatch..there's a scientific resource for everyone lol..

Your life seems to revolve around scoliosis and your surgeons...get out and have a life...if your surgery was so successful, you should be able to lead a normal life and get on with it...I'm sure your surgeons would appreciate that also if they really cared about you...

If I'd posted that, you would be accusing me of a personal attack.

You may be surprised to know that I believe in chiropractic treatment for back pain. I see a chiropractor several times a year for neck pain. And, I just tried a course of treatment for rib pain. (The treatment actually made the pain worse, by the way.)

I'm going to try to be as clear as possible. This is my PERSONAL OPINION. I am not a medical professional.

I believe that no one has ever proven that chiropractic treatment, or any alternative treatment, can permanently affect structural scoliosis curves in skeletally mature individuals. I do believe that some people with structural scoliosis curves may be able to avoid surgery by means of various alternative treatments. I believe that to successfully avoid surgery, those patients just mentioned, will need to continue treatment indefinitely, or their curves will return to at least their original degree.

If/when someone publishes a study in a peer-reviewed journal that proves they can permanently reduce structural scoliosis curves, and that their results can be reproduced by others, I will be the loudest voice encouraging patients to seek that treatment.

--Linda

[sportsdoc]

Linda...with all due respect..
your post sounds all good...
but that's not what I see..
your posts have patterns...
for me to point out would be pointless..
if you don't see it yourself, you won't see it if someone else pointed out to you..

Go back and read your posts. We'd all like to think ourselves as "fair"...but we rarely are..myself included. Frankly, that shouldn't matter in most cases. You seem to have strong opinions on what people should and shouldn't do...and a few number of young people seems to have formed a little group around you...so you do have some influence..that makes you dangerous.

You come dangerously close to giving medical advice on this forum, if not outright giving one, even overriding other physician's recommendations.

Linda, there are reasons why most physicians who's in right mind don't do diagnosing or recommend treatments online. Having seen many different conditions clinically, I know there's no way for me to know exactly what the patient's condition is or what treatment they should be seeking just based on what the patient tells me.

As complicated as scoliosis is, you seem to have no reserve on claiming to know what's good for someone and what's not...

you are right in one thing. you are not a professional..and even if you were, it'd be inappropriate for you to play one on internet...

As far as alternative methods go whether it's chiropractic or exercise or yoga, they all have their good and bad...it is obvious surgery isn't a cure and isn't for everyone. Let's not discourage others from trying to find what works for them.

This is a scoliosis support form..not online scoliosis clinic..

[LindaRacine]

Linda...with all due respect..
your post sounds all good...
but that's not what I see..
your posts have patterns...
for me to point out would be pointless..
if you don't see it yourself, you won't see it if someone else pointed out to you..

Go back and read your posts. We'd all like to think ourselves as "fair"...but we rarely are..myself included. Frankly, that shouldn't matter in most cases. You seem to have strong opinions on what people should and shouldn't do...and a few number of young people seems to have formed a little group around you...so you do have some influence..that makes you dangerous.

You come dangerously close to giving medical advice on this forum, if not outright giving one, even overriding other physician's recommendations.

Linda, there are reasons why most physicians who's in right mind don't do diagnosing or recommend treatments online. Having seen many different conditions clinically, I know there's no way for me to know exactly what the patient's condition is or what treatment they should be seeking just based on what the patient tells me.

As complicated as scoliosis is, you seem to have no reserve on claiming to know what's good for someone and what's not...

you are right in one thing. you are not a professional..and even if you were, it'd be inappropriate for you to play one on internet...

As far as alternative methods go whether it's chiropractic or exercise or yoga, they all have their good and bad...it is obvious surgery isn't a cure and isn't for everyone. Let's not discourage others from trying to find what works for them.

This is a scoliosis support form..not online scoliosis clinic..
So, now we're off the topic of whether chiropractic treatments can reduce curves? If you can't beat me in one arena, you have to try others. I've given you enough of my energy today. You can attack me all that you want. I know that my motives are pure. Can we say the same for you? That's as close as I'll get to the type of personal attack you've thrown at me today.

[sportsdoc]

I see...so you are pure at heart and I'm somehow impure..and somehow that's just being close to personal attack..
Is that an objective observation?
Let's turn the table then..if you feel you were attacked, than I'll let you have a go at me..you have my permission to hurt me...don't hold back...
tell me how my motives are impure...what's on your mind?
I'd really like to know...

[Karen Ocker]

The one big difference between you-- and Linda and me is she and I have scoliosis. This disorder has such an enormous impact on a person, in so many ways, that we feel compelled to share our experience, strength and hope.

I also trust YOU are NOT a PARENT of a child with scoliosis.

That having been said--- YOU have NOT WALKED THE WALK!!!. In that sense nothing you share on this forum will have the same validity as one of us--PARENT or PATIENT who live and struggled with all aspects of this problem.

SO WHAT ARE YOU DOING HERE ANYWAY????

This is a MODERATED forum and Linda Racine is the official moderator.

I do not see any medical advice here and I am a medical professional. Telling a person to visit a scoliosis specialist is NOT medical advice. As far as I can see Linda has not performed spine surgery, prescribed a brace or written an order for PT. Telling a person what published studies show so far--is not medical advice. Posting what usually helped us and what didn't--is not medical advice.

[Karen Ocker]

The fact that your name on the forum is "sportsdoc" seems like it's meant to give the impression the YOU can give medical advice or that YOUR info is more valid that anyone else. This can mislead forum participants to thinking this forum has its own "sportsdoc" giving valid advice. This is dishonest and a disservice to scoliosis patients and families. Could there be other motives like acting as a referral service to your friends or to unproven therapies playing on patients/parent fears?

If your are are sportsdoc then come clean and tell us if you are an orthopedic surgeon specializing in sports injuries, a dentist, a urologist, an eyedoctor.

Therei s nothing you have posted so far that impresses me both as a scoliosis patient or professionally .

[sportsdoc]

hmmm...
no..my children do not have scoliosis nor do I...
But anyone who's a parent can empathize with pain another parent may go through...yes..empathize..I think any decent parent wouldn't have hard time realizing that...

what am I doing here? what do you think? if you are medical professional (what type?) what do you think a healthcare professional would have to gain from here? i can only think of one thing...

One can NEVER be a good clinician without knowing what their patients are going through..I know that because until I had back pain for myself and was crippled, however short time it was, I could not empathize with what the patients were experiencing...

no I don't have valuable insight to share here...most people were doing fine before I was here and my presence won't change the fact..I'm not here to change anyone's lives...I don't have the power to do that..so are you..and so's linda...at least I don't have an illusion...

I mainly came here to take from others..their experiences...without developing scolisis myself..this is closest thing one can get in experiencing scoliosis...for me, being a chiropractor, patients' life style issue is just as big as the disease/condition itself...

You guys can go on assuming on my 'impure' intent all you want...I still get what i need from just reading other's posts...I don't need anyone to think best of me or even trust me here...and i'm not looking for it...

But that's not what I see from some here..including Linda..especially Linda...she does more than share her story...when someone's so involved with other people's lives like that and claim their motives are 'pure'...i don't know...it's always been my experience that those who claim to be 'pure' tends to be exactly opposite..but that's must my experience..

People usually see in others what they don't like in themselves...i'm just trying to assess what exactly she assumed she saw in me...

has her being the moderator..what of it? is that some kind of special badge that let's her control other people's behavior here? Hey..she can ban me...i have nothing to lose from being banned here. i have gained as much valuable insight as i can and am ready to leave anyway...and you guys could have the whole forum all to yourselves...

but before I leave..it'd really like to know..from Linda if she's never done what I've acused her of doing on the other post..not from you Karen...you don't have access to her private messages do you? I've had pm from several people regarding exactly that..

she knows what she had done and there are others reading this thread...so i don't think she'd lie...i'll take her word for it...either way...

btw, karen, would someone urging another to not trust their current physician or urging someone to forgo their physician's recommendation and give alternate options constitute medical advice or just friendly chitchat??
telling someone to see specialist is one thing...to overrule another physician's diagnosis or treatment protocol is quite another...in my opinion that is...

[LindaRacine]

but before I leave..it'd really like to know..from Linda if she's never done what I've acused her of doing on the other post..not from you Karen...you don't have access to her private messages do you? I've had pm from several people regarding exactly that..

she knows what she had done and there are others reading this thread...so i don't think she'd lie...i'll take her word for it...either way...

Want to finish that thought? I have no idea what you're asking.

btw, karen, would someone urging another to not trust their current physician or urging someone to forgo their physician's recommendation and give alternate options constitute medical advice or just friendly chitchat??
telling someone to see specialist is one thing...to overrule another physician's diagnosis or treatment protocol is quite another...in my opinion that is...

I know about what you're referring here. It's really convenient that the person to whom you're referring deleted all of her posts. She gave me quite a few red herrings (that she had over 100 x-rays at one appointment, that her surgeon was going to use an implant system that is not approved for, nor even recommended as useful for scoliosis by the manufacturer) that made it sound like her doctor was doing something dangerous. I have since checked it out, and as I say, those statements were red herrings.

Don't flatter yourself that you're the only one who gets PMs.

--Linda

[katblack]

Linda, why not just say my name instead of beating around the bush?
When did I say I had over 100 xrays at one visit? I said I had 45 xrays that day. 45 shots because of the hard angles he asked for before my surgery.

And I deleted my posts because of your hostility towards my treatment and your constant badgering of what I was posting.

And yes, of course, you checked into it, as always. You have your surgeon friends whom you consult on almost every single person who posts here.
You always ask who the surgeon is.
Every new person who posts, you ask, "And who is your surgeon?"

Why do you do that? Do you know every single surgeon in the whole country? Do you think you have that right to ask so many questions of people?


And oh of course, red herrings. You have no idea exactly what my surgery entailed unless of course you have been in contact with my personal surgeon and if this is the case, my private medical information has been breached.

God Linda, you just don't get it.
You are always offering up medical advice, offering your opinion on every person who posts here, speaking with surgeons about people here. You have no right to do that.
That is why I deleted my posts Linda. You were talking my case over with people whom I don't know, didn't ask you to talk to them on behalf and think that somehow you were being helpful.
It wasn't helpful at all.
I was facing very complicated surgery and trying to see if other people had been through what I was facing and instead of being supported and answered by other patients, I was given medical advice from someone who had no business doing that.

[sportsdoc]

The fact that your name on the forum is "sportsdoc" seems like it's meant to give the impression the YOU can give medical advice or that YOUR info is more valid that anyone else. This can mislead forum participants to thinking this forum has its own "sportsdoc" giving valid advice. This is dishonest and a disservice to scoliosis patients and families. Could there be other motives like acting as a referral service to your friends or to unproven therapies playing on patients/parent fears?

If your are are sportsdoc then come clean and tell us if you are an orthopedic surgeon specializing in sports injuries, a dentist, a urologist, an eyedoctor.

Therei s nothing you have posted so far that impresses me both as a scoliosis patient or professionally .

karen...let me let you in on a little secret...I'm a chiropractor as i have hinted in many many posts..i treat a lot of sports injury..my clinic is rehab based and we do sports rehab...i've taken one year post doc course on rehab on sports injury and continue to do CE every year on the very subject.....

so my nick is as accurate of discription as possible..
don't you think I would have used scoliosis doc if I wanted some extra weight here??

and I have no intention to impress anyone here..as I said on the other post, i'm here to learn rather than teach anything..

and as for referal services and playing on fear..that's what I thought Linda was doing...she's just very fond of her doctor isn't she??

Why don't you do this..click on my id and get all the post..give me an example of me playing on other people's fear...there aren't that many posts..so should be easy...

I have a busy clinic of my own..i have no time to waste promoting other people's..between my clinic and family, extra time is spent in church..i come to this forum between patients...not everyone has time to waste...
nor do I even want to promote my clinic..i certainly want to remain as anonymous as possible...

but I have to wonder though...is that your purpose here? or Linda's? I certainly see a lot of promotion for Linda's surgeons..I haven't read many of your posts...I think if anyone's guilty of any motivation of that nature, it's Linda...it's ironic that you guys are assuming others of such action isn't it??

[LindaRacine]

Interesting... I almost never post anything about my scoliosis surgeon. Where did you see me promote him other than here:

http://www.scoliosis.org/forum/showthread.php?t=4&highlight=john+gray

[sportsdoc]

Don't flatter yourself that you're the only one who gets PMs

you must be kidding..lol..this board must be your whole life...to even think that way ...that is really sad...
there are people out there that don't think much of a forum message...

as for that 45 x-ray thing katblack has mentioned...
I don't really want to defend another physician...but I see that quite often..
physicians do not take x-rays..heck ..they not even in the same room with you.....x-ray techs do that.....depending on their experience level, patient's anatomical variation, and the region one's x-raying, taking the right shot takes a bit of adjusting after each shot...
sure 45 is excessive..but not being there yourself, how would you know this physician was at fault? He could have merely ordered the shot, and when seeing that the film didn't get what he wanted, he may have order another shot...all he could've seen was just end results of serious of shots...when face with major surgery, I'd think getting exactly the right should would be called for..or do you think proper protocol is call it at 10 and just to blindly??
..but you wouldn't know that would you??

as far as modifications of the uses of the implants..I'd think that's a sign of good surgeon..to be able to use what he's got and be creatively solve problems...there are surgeons and there are surgical technicians...
that's just my classificatin..surgical technicians can only perform ones taught by someone else and only that...true surgeons can adapt to different situations...in every profession there are levels of skills and orthopods aren't exeptions..you'll be surprised how many orthopods advertising as spine specialists are not even board certified...

sure he could've been a complete quack...but what would you know about that? You do not have enough understanding to call the shots on what other's need to do..red herring or not..you have no idea what was going through that surgeons mind..

Do you think being on the other end of scalpel makes you an expert in spine surgery?

[Karen Ocker]

I have to wonder though...is that your purpose here?--(sportsdoc referring to me)


My purpose here is to encourage others that help is available especially adults but also parents. My parents were advised to let me stay crooked(100deg) and get educated.

When I was a teen going through this my parents had absolutely no idea what to do or where to go. My godmother heard of a spine specialist in New YorK City where I lived named Dr. Cobb. He did my original surgery which got a modest correction and enabled me to live a normal life until middle age.

When I developed breathing trouble at age 59 no one seemed to know what to do except do cardiac tests-which were normal but indicated my 30-80-40 deg curves were pressing on my lungs. My personal physician is a well respected osteopath who gave me no suggestions. I was faithully doing Pilates but my curves were increasing as I had no hardware .

I participated in the previous NSF forum where Linda suggested I see a revisionist since most orthopedic surgeons throw up their hands when they see a fused spine. I never even knew there was such a surgeon. This suggestion literally saved me time, money and possibly my life. I began to ask around about the experiences of various patients and I also contacted espine and got some names from Dr. Pashman.

With my revision, I got my life back and am pain free(and working) at nearly age 64. I got a 50% correction which is spectacular for an old stiff spine.
I didn't waste time going to people who were not likely to help me.

You have to give patients credit for their intelligence. Patients are more educated today, have access to sophisticated info and don't want to waste their time. They don't want false hope. We also have a gut feeling about doctors and have the right to ask anyone's opinion about other points of view. We are paying the doctor's salary and want results. Talking with other patients going through the same thing is comforting and helpful. Don't denigrate it.

My suggestion is if someone does not like this forum leave and start your own. :mad:

[Gail]

To all Scoliosis members,

I am very disturbed by all of these post.

I would like to share my reasons for joining this website. I did not have any knowledge of this website before my surgery and found it only after 1 1/2 yrs post op. I had no one to talk to about what was considered normal and what wasn't considered normal. If you are reading this post and you are pre-op or currently going through post-op you should consider yourself fortunate to have found this site. I wish I had been as lucky...it sure would have saved me a lot of worrying and wondering about pain, if my recovery period was about average for my age, it would have given me tips to help me through recovery and I could go on and on. I think we need to get back to the basics.

I think that people come to this website for many different reasons. Some come to get encouragement only. Some want the truth about the surgery and the recovery and nothing but the truth...they don't want anything sugar coated. Some come to vent their frustration about pain, lack of flexibility, frustrations about recovery etc...they aren't necessarily wanting answers, just wanting to vent which is therapeutic to them. Some just want to find out little golden nugget tips to help with their recovery. Some want advice about whether to get surgery sooner or later. Some want to post the different opionions from several doctors and wants to gather other peoples thoughts to help them sort through the decision of which procedure is best. Some come to get the "scoop" good or bad on the surgeons they are considering. Some just come to read, never join and never post. In fact, each night I see that there are actually way more guests than members on-line.

For whatever reason we each come to this website, we should understand that it is the internet. You are exposing things about yourself whether you have an on-line name or you use your real name. When you post you should expect to get a response. We are all humans and we can't detect from your post how you are feeling emotionally and what we might say that will upset you.

For me personally, when I see the 1,943 post from Linda Racine I know that she has been around for a LONG time. Then I realize if she has posted 1,943, just how many post has Linda read! I would say thousands and thousands. So, with that said when I see a post from Linda I believe in my heart she DOES probably have more knowledge of Scoliosis than anyone else on this board. In my opinion, she has probably read about every imaginable pre-op and post-op problem there could possibly be. So, I trust in all her post and all her reading of post that she is pretty much on target. I am thankful beyond words that Linda has "connections" with spine surgeons. We will all benefit from her being able to find out their opinions. Without this message board I have only one surgeon I can contact and that is it. How about all of you?

Linda's only objective is to help each of us search and find out as much as possible about our situation.

Kat Black...it use to be a quiet place to come for encouragement, help, advice and opinions. I'm sorry that you have felt like Linda betrayed you. Linda doesn't even know if Katblack is an on-line name or your real name(none of us do). I'm sure when she enquired about your procedure the doctor didn't say, "what is the lady's name", before I can telll you my opinion. The doctor could have cared less he was just answering questions that I'm sure Linda ask him from time to time. Your confidentiality was not exposed. I will be happy for Linda to ask any of her surgeon friends about any problem I have...I think most feel the same. Kat, I'm sorry to have to write this...I've held off for a long time...you owe Linda an apology and then please let's move on and focus on what we all came here to do.

Kindest Regards,
Gail

[katblack]

Kat Black...it use to be a quiet place to come for encouragement, help, advice and opinions. I'm sorry that you have felt like Linda betrayed you. Linda doesn't even know if Katblack is an on-line name or your real name(none of us do). I'm sure when she enquired about your procedure the doctor didn't say, "what is the lady's name", before I can telll you my opinion. The doctor could have cared less he was just answering questions that I'm sure Linda ask him from time to time. Your confidentiality was not exposed. I will be happy for Linda to ask any of her surgeon friends about any problem I have...I think most feel the same. Kat, I'm sorry to have to write this...I've held off for a long time...you owe Linda an apology and then please let's move on and focus on what we all came here to do.

Kindest Regards,
Gail
I'm sorry you feel that way.

I will not apologize for my feelings or what has taken place.
I was brought up today. I was mentioned. I didn't even post anything bad or harmful or negative in a long time, but I was brought up.
I have been trying to post positive messages, positive responses to people since my surgery. Someone asked me a question about the bone stim and I answered from personal experience. I post from personal experience only or answers readily available on the net.
I have been trying to be helpful yet I was attacked today.
I had a right, IMO, to defend myself.

I'm sorry you can't see that.

Oh, and my name is Kat Cooper. I live in Sarasota Florida.
I am very real with very real feelings, thoughts and ideas.

[sportsdoc]

My suggestion is if someone does not like this forum leave and start your own

Are you implying this is Linda's forum and one should leave if they don't agree with her?? By far..most people on this forum have been gracious and very kind...I don't have problem with this forum at all as a whole...

Linda...yeah..you only used John Gray once...but try doing search on just Gray..you mentioned him a few more times..

and i haven't been here that long..but there's been several instances you've tried to push your surgeon but didn't get as far as naming him...

Gail, reading posts and managing a complex medical case is quite different. I don't care how many posts Linda has read..she's still not qualified to give medical advice...both by qualification and legally...just as reading medical texts all one's life doesn't qualify one to practice medicine..what you get on this forum is patient's version of what had happened..let me assure you...patient accounts of what had actually happend to them is rarely accurate..both because it's subjective and opinion of someone who doesn't have understanding of the process..noone's saying anything about suggesting "other options", sharing one's knowledge or experiences..as you stated that is the purpose of this forum I believe.....

What's important is that one does not cross the line especially when there are people who can be easily influenced..


Karen..you seem to have a lot of pent up issues...but what that has to do with me..i have no idea...

Linda...back to you..did you ever see me promote my practice? Or other doctors? Only time I mentioned any other doctor's name was with patients who were being treated by them...you and karen seems to have assumed the worst of me for less indications than you have given yourself...

Karen ...is that from your gut feeling?? I think it's about time you start distrusting your gut feeling...

well..back to my family...g'nite all..

[LindaRacine]

Posts in which I mentioned the name of John Gray:

http://www.scoliosis.org/forum/showthread.php?t=2575&highlight=john+gray
http://www.scoliosis.org/forum/showthread.php?t=1223&highlight=john+gray
http://www.scoliosis.org/forum/showthread.php?t=4&highlight=john+gray

Please note that two of the posts were in response to other users asking about Dr. Gray. I hardly see that as pushing him upon others. I'm guessing that many people have mentioned the names of their surgeons quite a few more times. If Gail's correct about the number of posts that I've made, that's about 0.15% of the time.

I was brought up today. I was mentioned. I didn't even post anything bad or harmful or negative in a long time, but I was brought up.
Kat, I'd like to remind you that had you not responded to my post, no one would have had a clue, other than Sportsdoc and myself, that I was talking about you.

When you post on a public forum, I don't think you can expect any right to privacy. Anyone who has access to the internet could have read everything you said. Talking to someone else about what you posted was not, in my opinion, breaching anyone's privacy. You sent PMs to Sportsdoc about me about things that I posted. Did that breach my privacy? Nope.

I understand that you two dislike me. That's the penalty I pay for being so vocal. I'm not going to lose any sleep over it. You're not the first two, and you certainly won 't be the last. I think you might have better ways to spend your time than continuing to do this.

--Linda

[sportsdoc]

linda..do you always play the victim?
that you are hated by someone for your pure intent?
it's you disliking other's first..judging them with your own standards...whatever that maybe..
I certainly didn't know who you were until your hostile remarks..
how fair you are...eh??

[katblack]

You just don't get it Linda and sadly, I don't think you ever will.
It would be so great if you could just acknowledge my feelings, understand that what you did and said in those weeks prior to my surgery affected me, maybe we'd be able to move past this.
Instead of being supported, I was badgered.
I never asked for advice or a second opinion. I just wanted support and encouragement and to know if anyone had been through what I was facing.

You just can't accept that you have done anything wrong.
I know what I did. I lashed out at you over those things and caused a commotion on these forums which I apologized for.
I just want you to acknowledge how your doubts affected a person going into something as major I was.
Everyone respected and trusted you and here you were, doubting my treatment.
Instead of encouragement, I was fearful and it turns out I had no reason to be what so ever.

For all the advice and suggestions you hand out, you should take your own sometime.
I think you might have better ways to spend your time than continuing to do this.

[SandyC]

Karen,
Thank you......very well said :D

[JoAnn5]

I'm sorry.. i have to speak up in support of Linda and Karen here ... and the others whose intent is to help those with questions and needs. Neither of them have ever claimed to diagnose conditions or prescribe treatments. They have both been very level-headed in their responses when i would panic over something. Their common-sense SUGGESTIONS led me to seek help from my dr when it was needed.. and calmed me down when what i was experiencing was normal.

These negative posts from Katblack and Sportsdoc are upsetting rather than helpful... From the beginning readers could sense an antagonism from Katblack in challenging anything that Linda said to the point that i tried to ignore all her posts... I refused to respond to someone who was 'looking for a fight'. I have questioned myself some of the posts i read... i DO remember the comment about over 100 x-rays in one visit...Too many things just haven't added up for me to believe.

I wonder why anyone would act as though their surgery was harder/bigger/worse than anyone else's thus making them more important...
The purpose of this forum is not a contest of who wins for enduring the most... but to help and advise those who need it.

I thank Linda for helping establish this forum for us... and for moderating it. It has been a lifeline for me in many ways.

[LindaRacine]

Kat, I do acknowledge that I undermined your confidence going into surgery. And, you can't imagine how awful I felt about that. What I'm saying is that none of that would have happened if you hadn't given me several red herrings.

Can we end this discussion if I just admit that I just don't get it? I'm fine with that.

--Linda

[katblack]

Thank you for finally acknowledging it.
I appreciate that.
But still, these red herrings, you still have no idea what he was talking about doing or did in my surgery but you still claim it was the wrong thing to do.
It wasn't.
There are wires holding screws in place because my loss of pedicules at the T-3 level. He tried something new and it worked. He's going to teach it to other surgeons, present my surgery to them to show that it can be done.
Can't you just be happy for that?

I really do appreciate you finally taking some of this.

[LindaRacine]

Thank you for finally acknowledging it.
I appreciate that.
But still, these red herrings, you still have no idea what he was talking about doing or did in my surgery but you still claim it was the wrong thing to do.
It wasn't.
There are wires holding screws in place because my loss of pedicules at the T-3 level. He tried something new and it worked. He's going to teach it to other surgeons, present my surgery to them to show that it can be done.
Can't you just be happy for that?

I really do appreciate you finally taking some of this.
Did you forget that you told us that Dr. Moreno was going to use Dyneses implants on you?

--Linda

[katblack]

And that was a mistake on my part because I didn't understand what he was talking about in terms of wires. Humans make mistakes Linda.
I heard him in the office and talking about attempting to use something like Dyneses implants and thought I understood that is what he was going to do.
That was clearly a misunderstanding on my part which was then cleared up at my pre-op appointment but by that time, I had no interest in coming back here to correct that information.
I was far too frustrated.

Anything else?

[katblack]

And I'm not saying anything else in an aggressive manner. I'm asking if there's anything else that we need to clear up so that this whole situation can be put behind us and not taking jabs at each other or off remarks.

This is an honest attempt to clear the air on any misunderstandings and issues we have.

Thanks.

[LindaRacine]

Kat...

Thanks. I've seen more than my fair share of scoliosis treatment disasters, and I wanted to try to help you avoid one. After looking at the system, I thought that the Dynesis implants would be a disaster for someone with scoliosis. I verified that with a few scoliosis specialists. The fact that Dr. Moreno was going to use those implants on you really scared me. I thought long and hard before saying anything to you at that time, as I didn't want to undermine your faith and trust in Dr. Moreno. I'm glad we cleared this up.

Some food for thought... I wonder, looking back, if you knew someone was going to a surgeon who was going to use something that other surgeons considered dangerous, would you try to warn that individual, or would you let them be hurt?

Regards,
Linda

[katblack]

Kat...

Thanks. I've seen more than my fair share of scoliosis treatment disasters, and I wanted to try to help you avoid one. After looking at the system, I thought that the Dynesis implants would be a disaster for someone with scoliosis. I verified that with a few scoliosis specialists. The fact that Dr. Moreno was going to use those implants on you really scared me. I thought long and hard before saying anything to you at that time, as I didn't want to undermine your faith and trust in Dr. Moreno. I'm glad we cleared this up.

Some food for thought... I wonder, looking back, if you knew someone was going to a surgeon who was going to use something that other surgeons considered dangerous, would you try to warn that individual, or would you let them be hurt?

Regards,
Linda

I understand your reasoning now for what transpired, thank you. Back then, all I could see was someone adding to my already enormous fears and causing me to doubt.
Thanks again for clearing that up.
Some food for thought... I wonder, looking back, if you knew someone was going to a surgeon who was going to use something that other surgeons considered dangerous, would you try to warn that individual, or would you let them be hurt?
I honestly don't know what I would do. I would probably tell the person my concerns and hopefully not scare them. I would hope that I would choose my words carefully enough to not intimidate or undermine, but to ask them to double check and make sure that this is what their surgeon was going to do.
As in my case, it was a huge misunderstanding on my part and probably due to my fears and nervousness. When sitting in that office 2 weeks out from surgery, you can barely focus on what's happening. Well at least that was my case. I heard Dyneses system when in actuality, he said something like Dyneses system. He just wanted to use wires.
If I had played back the recording we made that day, I would have heard what was actual and not a misunderstanding.
I really should have done that seeing as how he gave me permission to record him.

Thank you for taking the time to clear this up and glad that we both acknowledge our own takes on this.


Have a good afternoon. :)