Vertebral Stapling

[Celia Vogel]

I'd like to draw your attention to the fact that not only is dr. Braun quite the cutie patootie :D but he is also quite brilliant! Here is a presentation from the latest SRS meeting which discusses some of the findings on vertebral stapling. The discussion immediately following the presentation is also very interesting.



http://www.istreamplanet.com/srs/default.asp?np=media&confgroup=Annual

42nd Annual Meeting



Friday Sessions
10:26am Can Fusionless Scoliosis Surgery Reverse the Heuter-Volkmann Effect? play4
John Braun
067

[Carmell]

Dr. Linda D'Andrea also had a nice presentation on non-fusion surgery (ie, stapling) at the SRS conference. I believe her presentation is on the first day - pre-course schedule.

[Celia Vogel]

The pre-course is amazing resource for congenital scoliosis, it deals almost entirely with the topic. I found the non-operative presentation by dr. Zeller interesting. Here is the abstract by dr. Braun and colleagues on fusionless surgery that won the Hibbs award at the conference.


2007 Award Winners
Paper #66
Hibbs Award Nominee for Best Basic Science Presentation

The Effect Of Two Clinically Relevant Fusionless Scoliosis Implant Strategies On The Health of the Intervertebral Disc

Kenneth J. Hunt, MD; John T. Braun, MD; Bryt A. Christensen, BS

Introduction: Fusionless scoliosis surgery is thought to be more physiologic than fusion and, thus, less likely to cause disc degeneration, particularly at adjacent segments. However, there are no data supporting this belief. This study evaluates the effect of clinically relevant fusionless scoliosis surgery implants on the health of instrumented and sub-adjacent discs. We hypothesize that flexible implants will result in less damage to the discs than rigid implants.

Methods: Scoliosis was created in twelve 8-week-old female goats using two fusionless scoliosis implant strategies from T7-T12. Three groups were studied: 2 SMA staples per level, submaximally tensioned bone anchor/ligament tether (BALT) and untreated controls (n=6 per group). At six months, instrumented and sub-adjacent discs were harvested. Qualitative and quantitative analyses were performed using H & E sections on the discs (cell density and fibrosis), endplates (concave endplate and trabecular thickening, tidemark flattening, bone drift) and surrounding vascularity.

Results: Scoliosis was created in both treatment groups but not controls. All instrumented discs demonstrated a trend toward decreased cell density compared to sub-adjacent discs and controls but no difference between sub-adjacent discs and controls. Endplate/trabecular thickening and bone drift were present in all instrumented discs, but not in sub-adjacent discs or controls. Decreased blood vessel density was present in all instrumented endplates compared to sub-adjacent and control specimens (p=0.012). There was no difference in vascularity between sub-adjacent and control endplates or between convex and concave endplates.

Conclusion: The data in this study demonstrate that both rigid and flexible fusionless scoliosis implants induce some degenerative change at the instrumented disc (reduced cell density) and endplate (thickening, loss of vascularity) but spare the sub-adjacent segment. There were no differences between flexible and rigid implants. Further analysis is necessary to define conditions that optimize scoliosis correction with minimal detrimental effects.

Significance: This study improves our understanding of clinically relevant fusionless scoliosis implant strategies and their effect on the intervertebral discs.

[Celia Vogel]

Is it just me? Doesn't it worry anybody else that they're still testing these staples on goats and other live animals and at the same time performing experimental surgery on children with a non malignant condition?

[stephanieC]

Celia,

I am not sure VBS is still considered "Experimental" as you say. I think it is just coming out of it's experimental phase and entering it's doing well phase, perhaps better even than bracing. We need a few more years to say for sure. Other very well known surgeons are beginning to recommend this as a viable option to a long time serving in a brace. In fact, a very well known and prominent surgeon in Manhatten, Dr Boachie, was the first to mention VBS to me, as an alternative to 6 or 7 years in any brace. Which many would consider unbearable.

They are still performing many procedures on animals. Goats etc..... Even some types of heart surgery are still being done on animals. This is how the medical world makes pre existing procedures better!!

Medicine and science are not as exact as many would like to believe. They are constantly being upgraded, and made better, more convenient, or less invasive.

God bless the doctors who are the pioneers and the patients who believe in them!! For all of us benefit!!

I see from your signature that your own child was in a serial cast for some time. Many would consider that cruel and unusual treatment of a child. But you and I know better. You gave your daughter the very best as you believed it to be... right?!?

Stephanie

[Celia Vogel]

I think it's just plain wrong to compare vertebral stapling to bracing because one is an experimental surgical procedure and the other is not! If vertebral stapling is an alternative to bracing then it should meet the new SRS standardized criteria for bracing before they can make the following statement:

the results in this early cohort of patients showed curve stability after vertebral body stapling to be 87% when defined by progression less than or equal to 10 degrees

If anything, vertebral stapling should be considered an alternative to other surgical procedures such as growth rods. The following statement in the same article is also very misleading!

Of 31 patients aged 8 years or older at the time of surgery, 21 patients with 12 months or more of followup and a preoperative curve measuring less than 50 degrees were reviewed ( figure 4). These 21 patients had 25 curves stapled. The average time of followup was 1.6 years and the average preoperative curve measured 33 degrees ( range 20 - 40). Three of the 25 (13%) of the curves progressed greater than 10 degrees. None of the 8 preoperative curves less than 30 degrees progressed, whereas three of the 17 (18%) of the preoperative curves greater than or equal to 30 degrees did progress.


Keep in mind how they define progression... it states that no child with a curve under 30 degrees progressed.... what they mean to say is that no child with a curve under 30 progressed more than 10 degrees! Curves that progressed less than 10 degrees say 8 degrees were not considered in the criteria for failure or progression. Given the short followup period, a curve that started at 28 degrees and is now 36 degrees would be in the success group!!!

[mariaf]

Other very well known surgeons are beginning to recommend this as a viable option to a long time serving in a brace. In fact, a very well known and prominent surgeon in Manhatten, Dr Boachie, was the first to mention VBS to me, as an alternative to 6 or 7 years in any brace. Which many would consider unbearable.

God bless the doctors who are the pioneers and the patients who believe in them!! For all of us benefit!!

I see from your signature that your own child was in a serial cast for some time. Many would consider that cruel and unusual treatment of a child. But you and I know better. You gave your daughter the very best as you believed it to be... right?!?

Stephanie

What a well written post, Stephanie.

In addition to Dr. Boachie, Dr. Skaggs in LA, and Drs. Emans and Hresko in Boston are just a few of the other very well known orthopedic surgeons who are starting to perform the VS procedure. Seems that some of the best orthos in the country think it is a very viable option. I'm sure some of that has to do with the high success rate so far and the fact that unlike braces, the VS seems to very often actually reduce the curve.

Unfortunately, some people feel they know better AND know what is best for your child and everyone else's - you will never win this argument so my advice to you my dear is to just let it go. Some people don't give parents the credit they deserve for being capable of doing research, weighing options and making an educated decision for their child.

By the way, now you know how everyone says they love the VS support site - because the folks are supportive and helpful and "nobody is ARGUMENTATIVE and negative like on some other sites". We've both heard that said time and time again - and now you just witnessed first hand what everyone was talking about :)

See you on the VS support site Stephanie!

p.s. It's a shame that you, like so many others considering the VS procedure, will probably avoid this site and stick to groups where parents actually support each other's decisions.

Too bad.

[stephanieC]

Celia,

Don't be silly. You are being misleading. Of course stapling is an option comparable to bracing. It IS an internal brace. It allows for mobility and flexibility similar to the rational behind spine cor. You just don't have to put the brace on and wear it for 20 hours everyday for X amount of years. It is always with you supporting your spine. A person would either do the VBS or the bracing when the curve has progressed to the mid twenties or so. (some earlier, some later. Depends on so many things))

I believe it is a personal philosophy that a parent holds. Do I do the spine cor and have my child endure years of discomfort and emotional and psychological issues or, do I do the stapling and risk the surgery, offering my child a "normal" brace free childhood. I am not even saying that one is per say better than the other. It's a personal philosophy. I looked into spine cor at great length, believing it to be the only "brace" option that my child may have been able to tolerate. But for me and my daughter, I believe the VBS to be a better solution. The surgery is not without risk, but the outcomes for most children who have gone through it have been fantastic. If you don't know this, then you haven't been listening to what many parents here on the forum have been saying. No matter what you write Celia, it is true that the results have been amazing. Ask the parents of the kids who have had it done. VBS has found extreme success in the last few years. I do not undrstand your true opposition to it.

That is NOT to say that VBS has not had its upsets too. Just like bracing...there are so many factors. Like, what degree curve a child has when they get the stapling or the brace? Where is the curve located? One curve or two? Compensatory or two individual curvatures? Stapling and bracing need to overcome the same obstacles.

It would not be common to see a person greater than 45 degrees being stapled. Nor would it be common to recommend a brace at that time. Spinal fusion would most likely be the recommendation.

I find it interesting that in the goat experiment you provide, Dr Braun et al, tethered those goats until there degree of curve was greater than 45 degrees. The average being 61 degrees?!!?... hello.... not a lot of wonderful outcomes will happen for that degree of curvature with stapling, spine cor, Scroth, boston, the hanging upside down thing, etc....

Use spine cor before your curve hits 30 degrees and your likelihood of success has gone up tremendously. As Dr Rivard said to me on the phone a month or so ago. Guess what... the same is true for stapling. Try spine cor at 40 degrees... no promises there, not with stapling either. Scoliosis is frustrating that way.

Vertebral stapling is absolutely an alternative to bracing. Spine cor or hard bracing or scroth or all the other stuff out there. Each person must research their options. One option will sit better with you depending on personal philosophy.

Stephanie

[Celia Vogel]

Sorry, I wasn't aware you only wanted to hear me recount stories of clear sunny skies, summer afternoons by the lake and the pros of vertebral stapling. You should be aware that there are two sides to this picture before submitting your precious child to an elective experimental procedure that allows doctors to test theories with each new case for the benefit of future generations. Knowing what I read and hearing that some parents were getting the wrong impression about curves under 30 degrees not progressing, I could not with a clear conscience remain quiet. They even state in the article:

Larger numbers of patients are needed to allow sub analysis of patients to decide who best benefits from stapling.

[stephanieC]

Celia,

Sunny skies?? Afternoons by the lake?? Why all the sarcasm??

I am perfectly aware of the "two sides of the picture" as you say. Parents are not given the wrong impression. You have a bizarre, over the top aversion to VBS. It is a viable option that parents should look into when faced with many years of bracing. That's all I am saying.

I researched spine cor long and hard too. Nothing better about it. Just a different (and more ongoing) set of problems.

As far as your article quote.. read it again...
Larger numbers of patients are needed to allow sub analysis of patients to decide who best benefits from stapling. Hello..... this is true for spine cor too.

It seems to me, that all methods of treating scoliosis work better in the smaller curves and/or younger children. No surprise there. Do your research!!

I want parents to come on this forum and read all the information in a fair and balanced way. Then they should contact the Doctors(who are the actual experts) for a consult and learn more in depth what they need to know to make their decision regarding treatment.

Stephanie

[Celia Vogel]

I wish you all the best. :)

[stephanieC]

:) :) Thank you Celia, I wish you and Deirdre all the best as well!! :) :)

Stephanie

[amandap]

Stepahnie,

I apologize to you I should have warned you about Celia there is no reasoning with her ~ she has a very one sided opinion of VBS and truly just does not understand but I do have to admit she does a great job of doing a DISSERVICE by giving out prejudicial misinformation about VBS and an absolutely amazing job of SCARING parents who are merly asking questions to gain a better understanding of ALL available options to treating scoliosis.

Please don't try to help her to understand the procedure because she won't. Maria and I have both tried and we really never wanted to change her opinion of the procedure because her opinion and her choices are her own but we did want her to at least consider how she approched new people all together because many times they are very fragile and her comments tend to scare them away but it was all just a HUGE waste of time as you can see ~ oh well ~ live and learn. I also believe Celia just has alot of anger issues that we here or on any support group can't help.

On another note, you are 100% correct that VBS is already moving out of the experimental phase because it is now covered by insurance and the first VBS surgery covered by insurance will be perfomed by Dr. Hresko (Dr Betz is assisting) in Boston.

Hugs to you and we'll talk more soon.

~A

[Celia Vogel]

I know you've made up your mind and that's okay! I realize these personal attacks stem from fear because hey who isn't scared ???? I'm not going to resort to mud flinging or name calling. My arguments so far on vertebral stapling deal with moral and ethical issues and I'm certain I have never slammed anyone for making this decision for their child. I was seriously contemplating it at one time if Deirdre ever progressed. If there is a message behind my posts to people considering this procedure it's this: *proceed with caution* Here is the abstract for the article I quoted above:

1: Clin Orthop Relat Res. 2005 May;(434):55-60. FPRIVATE "TYPE=PICT;ALT=Click here to read" Links

Vertebral body stapling procedure for the treatment of scoliosis in the growing child.

Betz RR, D'Andrea LP, Mulcahey MJ, Chafetz RS.
Shriners Hospitals for Children, Philadelphia, PA, USA. RandalBetz@aol.com
Thirty-nine consecutive patients have had vertebral body stapling of 52 curves (26 patients with one curve stapled and 13 with two). For the group with patients who were 8 years or older with less than 50 degrees preoperative curve and a minimum 1-year followup, coronal curve stability was 87% when defined by progression less than or equal to 10 degrees . Fusion was necessary in two patients. No curves less than 30 degrees at the time of stapling progressed greater than or equal to 10 degrees . Major complications occurred in one patient (2.6%, diaphragmatic hernia) and minor complications occurred in five patients (13%). Further followup of the patient cohort and further research into efficacy and indications are warranted.
PMID: 15864032 [PubMed - indexed for MEDLINE]

[mariaf]

Celia,

I have nothing further to say to you regarding vertebral stapling. I am curious, however, about why you felt the need to include the e-mail address of Dr. Betz in your post. What's the point?

I read where you posted on another forum that the doctors performing the VS surgery were trying to "immortalize" themselves. Obviously another one of your cheap shots at Dr. Betz.

Let me ask you...have you ever met the man?

I've actually seen him in action dozens of times over the past four years at Shriners. I don't think I've ever met a more caring and compassionate doctor. Other parents of his patients have used the words "humble", "unassuming", "down-to-earth" to describe him. Their words, not mine. His colleagues, many of whom I have gotten to know over the years, also admire how he goes about his work and how he truly cares about helping kids. I can't tell you how many parents I have met while in the waiting room at Shriners who told me that he helped their child when nobody else knew what to do for them. He's clearly one of the best pediatric orthopedic surgeons around - even YOUR own beloved doctor in Montreal recommened Dr. Betz to a patient.

But you have decided he is trying to immortalize himself. You, who just told Amanda you don't want to sling any mud.

Rest assured, the LAST thing in the world Dr. Betz cares about is immortalizing himself. He's the first one to turn the spotlight or credit to one of his staff members, and away from himself.

In the past you have accused Amanda and I of having a vested interest in recruiting patients for Dr. Betz (equally ridiculous). In fact, it would be as ridiculous as us accusing YOU of having a vested interest in recruiting patients for your Spinecor doctors in Montreal - or for doctors who do serial casting. But Amanda and I are RATIONAL, so we choose not to do that. Obviously, you are happy with the care these doctors provided to your daughter and you would therefore suggest that other intelligent, educated parents CONSIDER those options. That's fine.

But why isn't it OK if we do the same thing?

I saw with my own eyes on David's last x-ray not only how his curve has improved but his rotation as well. Would I prefer that he did not have to have the stapling? Of course I would. Would I choose the stapling again over the other available options? IN A HEARTBEAT.

[Celia Vogel]

My God! You think this is an attack on dr. Betz :confused: Excuse me I retrieved that abstract from pubmed and I copied and pasted it directly from the website!! This is all about the welfare of the children!!! This has absolutely nothing to do with the doctors!! Have you read any of my posts? Have we reached a point where we can't even question "authority" and just be complacent and accept our fate? If that's the case, then we're doomed!

[mariaf]

Yes, unfortunately I HAVE read your posts - like the one I mentioned earlier where you stated on another forum that the doctors who perform vertebral staplings were trying to "immortalize" themselves by performing experimental surgeries on children.

It's not the first time you've taken cheap shots like that either.

[amandap]

Maria,

Darling don't waste your time or engergy ~ it's not worth it. You and I both know (as do many others) the specifics regarding these "initial" stapling findings and therefore you and I are able to advise parents based on real experiences with the procedure and real communication with the surgeons we're not just giving them info from articles we've read 10,000,000,000,000,000 times.

We all know (as do thousands of others) that Dr. Betz, his entire staff and shriners in general is a wonderful facility with people who really care these people are there because they want to help better the lives of children they are the leaders in research but someone who's never actually been there and met these people wouldn't know that.

I honestly couldn't make any comments about the docs in Montreal because I don't know them and have never been to their facility. I also wouldn't dare tell anyone that Spinecor doesn't work because there are so many failures that I've read about or that spinecore is a crock because eventhough many children have great "in brace" results the initial curve is still there when the brace comes off (because we all know that a brace will not correct a curve) so essentially kiddos who wear spinecore for 6+ yrs still have scoliosis when their done growing. Or do I dare tell people that putting your child in a plaster cast or hard brace is immoral or unethical ~ nope I would never say that to anyone ~ since I don't know I just keep quiet and allow each parent to make their own choices based on their own beliefs.

Save your time and energy for the VBS support site.

Hugs to you ~ A

Celia ~ please read below what a parent emailed me privately ~ you really are doing an injustice which is the complete opposite of what a "support group" is suppossed to be.

"I had been reading the posts from Celia on the scoliosis forum & it was really upsetting/frustrating and I just want to thank you for stepping in to Stephanie's aid. I am so grateful that you and Maria have started the support group for us - away from here! I am so glad to be part of your group - this would just stress me out beyond belief if it was the only place I could have turned to. I have never joined the scoliosis forum and I probably never will. My son registered to correspond with some kids in boston braces, but I am not letting him back on. He does not need to have anyone make him any more nervous than he already is.
I am not sure how you find the time and energy you make for our VBS support group - but I am truly grateful that you do!
Thank you so much. I hope you and your family have a wonderful Thanksgiving!"

[Celia Vogel]

:D :D :D This is becoming comical! Just know I love you both and I know you mean well! Your kids are doing great!

[mariaf]

There is NOTHING comical about you misinforming parents and scaring them with your often inaccurate, one-sided views. Some of these kids could really benefit from the vertebral stapling - an option which some of the best orthos in the country (Boachie, Skaggs, Emans, etc.) are now recommending as a VERY viable and desirable option.

Luckily, I hear from parents every day who are far to wise not to do their OWN homework.

[amandap]

Am I confused or something because there was nothing comical in my post ~ Maria do you see something I posted as comical? I've read and re-read my post and nope I see no humor in my post whatsoever. Just some heartfelt advice to my dear friend.

Hugs ~ A

[mariaf]

Nope, nothing comical. But sometimes folks use lines like that when they can no longer find ways to defend their inaccurate and misleading views.

Big hugs,

[Celia Vogel]

Well if you can't see the humour in this, then I guess the next best thing is to just cry.

[mariaf]

The humor in what?

What's funny about parents trying to decide which form of treatment is best for their child?

For God's sake, have a little compassion for these new parents. I know that when David was first diagnosed, I found NOTHING funny in the situation.

Were you laughing when you were considering options for Deirdre?

[amandap]

Oh, I get it ~ all of these posts/remarks/sarcasm, etc. from Celia have all been jokes and she never meant any of what she was say saying it was all one HUGE GIGANTIC VERY LONG ONGOING JOKE just to get a rise out of people who really care. Sorry but NO I don't see the humor in it.

I honestly don't think it's funny to mess with one's emotions but everyone has their own sense of humor (I guess). I find nothing humorous or comical about anyone having to face the ups and downs of dealing with scoliosis nor do I find the turmoil we as parents face when having to make a difficult choice of surgery or bracing for our children very funny. Personally I find everything dealing with scoliosis difficult and just downright serious.

~A

[Celia Vogel]

The humor in what?

Hello...Amanda's post! Our little discussion means NOTHING!!!! People make their own decisions and what we say in this little box is our way of venting our anguish, frustrations etc. etc. I try not to take myself too seriously and I suggest you both do the same.

[amandap]

Hello...Amanda's post! Our little discussion means NOTHING!!!!

To you it may mean nothing but to new parents trying to read and learn your comments frighten them before they know all the facts. Oh, and I don't take you seriously because I know better but "newbies" don't and they really do put alot of trust in people who've been through this and when they ask they really are looking for real people and real support.

[mariaf]

Hello...Amanda's post! Our little discussion means NOTHING!!!! People make their own decisions and what we say in this little box is our way of venting our anguish, frustrations etc. etc. I try not to take myself too seriously and I suggest you both do the same.

Celia,

Please save your humor for private e-mails to your friends. The stakes are too high here.

I thought you had the big "moral conscience". But you see nothing wrong with toying with the emotions of a parent whose child was just diagnosed with scoliosis?

Amanda and I don't have anguish or frustration over our decisions - but if you do, please find another place to vent rather than frightening the new parent who comes here looking for support.

OH, AND NOW ALL OF A SUDDEN PEOPLE CAN MAKE THEIR OWN DECISIONS?

HOW FUNNY OF YOU TO SAY THAT. A FEW MONTHS AGO YOU WERE ACCUSING AMANDA AND I OF PERSUADING PARENTS TO HAVE THEIR KIDS UNDERGO EXPERIMENTAL SURGERY (YOU KNOW, OUR VESTED INTEREST AND ALL THAT). NOW ALL OF A SUDDEN YOU HAVE SEEN THE LIGHT AND REALIZE THAT PEOPLE ARE SMART ENOUGH TO MAKE THEIR OWN DECISIONS.

[Celia Vogel]

Well....I was trying to keep the discussion serious until Amanda's post! Sorry. Re-read it for yourself if you don't see the humour. Obviously my posts are hitting a brick wall so I'm not even going to bother. Your perception of reality is different from mine so let's just agree to disagree and move forward. End of story!

[amandap]

Well said Maria ~ Thank you.

[txmarinemom]

I've just been following the thread - because VBS wasn't around 30 years ago when my scoli was diagnosed.

Having been on enough internet boards to know - and as my son's boot camp SDI was fond of saying - "There's always one.".

To any newbies "welcomed" here with this topic, please ... do your research and don't accept Pubmed abstract and articles quoted and/or interpreted out of context by a lay-person.

Seek professional opinions - and "non-humorous" sources for your info. (I guess I missed the humor, as well).

Regards,
Pam

[Celia Vogel]

To any newbies "welcomed" here with this topic, please ... do your research and don't accept Pubmed abstract and articles quoted and/or interpreted out of context by a lay-person

Ouch! I thought my analysis was pretty good. :rolleyes:

[amandap]

Thank you Pam.

[gerbo]

To any newbies "welcomed" here with this topic, please ... do your research and don't accept Pubmed abstract and articles quoted and/or interpreted out of context by a lay-person.

I'd say, do your research but look at the issues from all possible angles. Listening to the opinions of a large variety of individuals, all with their own experiences, knowledge, prejudices and blind spots is only going to help you in forming a rounded view. And just ignore the opinions you cannot cope with.

And Pubmed is a great source of information!

And some people cannot cope with strong characters with strong opinions and some people think Celia is great, and has been of great help to many.

[gerbo]

i do find this stapling fascinating though.

does the stable run from vertebra to vertebra, or from the top to bottom of one vertebra.? Is correction attempted as and when the staples are applied or is it just meaned to happen over time? How many are applied usually?

[amandap]

The staples are applied from top of to bottom of each vertebrea ~ some correction takes place in the O.R. when the staples are actually applied and then correction can continue as the child grow.

Two children thus far have actually over corrected and one of those children has had the staples removed, another child who just had surgery 6 weeks ago who had a pre surgery curve of 28* has corrected down to 6* is that not amazing. My own daughter went from 42* down to 26* ~ these children were all facing 7+ years of brace wearing had they not had the stapling done.

And I do agree with you Gerbo that Celia has helped many people and her expertise regarding serial casting and spinecore is wonderful.

~A

[Celia Vogel]

Awww.... thanks guys! :D We've had some pretty interesting discussions, don't you think?

[scolimom456]

Celia,
Why do you have such a strong opinion against stapling? Nobody is going to force your daughter to have the stapling done.

Why can't you just stay away from the topic?? WHy not just say " VBS is not a choice I am considering for my daughter, I'd rather try spinecor"? ANd then, stay involved with helping people considering spinecor, instead of adding all this negativity and scare tactics to what has become a viable option for some kids with scoliosis.

As with almost any health problem (from cancer to the flu), there is seldom 1 cure for all people. The treatment that works for one person often fails for another - this is why parents so often must decide what course of treatment to follow, the doctors give you choices, but ultimately you must make the final decision, because even the doctors don't know for sure what will be successful.

I can't figure out why you would be so Pro-spinecor and Anti-stapling to dig up any information that you can twist into sounding like stapling is horrible - you do not seem to ever quote the favorable stats from the same articles, only the negatives. No scoliosis treatment is a guarantee - including spinecor. All of the treatments that are offered have downsides - that's why parents are sad when their kids are diagnosed with scoliosis.

[txmarinemom]

And Pubmed is a great source of information!

Damn skippy it is, as is MedLine and Entrez (yet another portion of PubMed) and if I inferred I felt differently, I was not clear in my stance.

I work in aerospace. I can get my hands on all KINDS of "experiments flown" data. Just because I can understand *most* of what's written, does that make me an expert - or even capable of extrapolating/interpreting that data for OTHER lay people? Neyt.

Absolutely, gerbo ... the truth lies somewhere in the middle of all the opinions and facts. I just hate to see someone running people off a fairly well documented procedure with their OWN negative - or non-existent - personal experiences.

I only read of this procedure a few days ago, and thank GOD I am not facing what most of you are (deciding on a path of treatment for your child ... BIG hugs to you all!). I'd suggest we all refrain from negating what WE didn't try, or what WE (personally) don't advocate.

Just because it wasn't OUR choice (unless it's pure quackery - ala Copes) doesn't mean it has no validity. And from what I've seen, VBS *has* some pretty interesting empirical data.

Regards,
Pam

[Celia Vogel]

Good points! When did I say my opinion is the last word?

[txmarinemom]

I don't believe *anyone* said it was, Celia. Sadly, some newbie who just arrived here might believe so.

Regards,
Pam

[Celia Vogel]

Well if anyone has something positive to say about vertebral stapling, by all means do so! However this "shoot the messenger" mentality exhibited by a few seems to me to be an attempt to silence the opposition.

[txmarinemom]

Do you actually READ, or just post, Celia?

I'm pretty sure at least TWO parents in this thread have experience. And FAR more than you can claim on VBS.

[mariaf]

Dear Pam and Scolimom456,

Thanks VERY much for understanding what we are trying to do. I recently told one parent who was interested in the stapling, but who was, at the same time nervous about surgery, NOT to rush into the stapling - that they could always decide to go that route later on. We are not trying to force or push anybody into anything.

My big issue is that I was NOT told by my son's former ortho that the procedure even existed - and had I not found out on my own, I'd still be in the dark about it. It turned out to be a wonderful thing for my son. And I only wish someone had told me sooner.

Amanda and I are working moms (we have three kids each). But we have decided to devote a lot of time to trying to help other families by giving them information as well as sharing our personal experience. We're not looking for a pat on the back - we do this because we want to do it and enjoy doing it - BUT when we have to deal with this negativity over and over - it's very tiring and frustrating - luckily we don't get discouraged easily :)

So I just wanted to let you guys know that it was a big lift to read your posts.

Thank you.

[Celia Vogel]

Do you actually READ, or just post, Celia?

I'm pretty sure at least TWO parents in this thread have experience. And FAR more than you can claim on VBS.


Who are you exactly? :eek: Do we know you by another name? I wonder.... Anyway, in my own defense since we're digging up letters, here is a letter I received from another parent who is new to this journey.

Thanks for sharing your view! I have no opinion of the stapling one
way or the other but I appreciate what I learn from people who have
done research or have benefited/not benefited from the surgery. I
feel like am in such foreign territory right now, still surprised at
the initial diagnosis, that I just simply can't make much sense of
some of the articles.

I am glad forums like this exist because I'm having a hard time
getting concrete answers to my questions and I appreciate the honest
feedback and open dialogue about the topics!

[txmarinemom]

Pardon?

Who *am* I?

What does my sig say?

A silly question. Check the adult side if you wish. Are you paranoid enough to think I'd fabricate an AIS diagnosis to annoy you?

Please.

[stephanieC]

wow that was a lot of posts I've missed!!

I was gone from the forum today actually looking into some of the articles and statements that have been sited here in a deliberate effort to make stapling look like a bad option. You can not really tell what the article means if you only look at one or two statements. I am so happy I took the time. It has totally reaffirmed my decision for my daughter to have the stapling procedure. What amazing results now 5,6,and 7 years later.

My daughter was diagnosed in July. I got to it right away and decided that for her, it would be spine cor or VBS. I researched a lot. Talked to doctors, had consults, asked other moms, and sifted through a boat load of information. I spoke with doctors who are well respected and at the top of their field. For me and my daughter, I chose VBS. I feel it is the best option for my daughters situation. And Yes, I feel it is a much better option then spine cor!! That is my conclusion after doing my research. This is what all moms and dads do. After you vomit, worry, cry...you look into everything you can. You see the top doctors in scoliosis. Then you take action. One option will sit better then the others. My advice is do not jump the gun. Research everything first, all be it quickly, as scoliosis can progress without notice.

Celia,
you are negative. You are flip and careless in the things you say. You throw out bombshells in one post and then play it off as a joke in the next. You quote from articles that are out dated and not accurate anymore. For example, you have posted, more than once that the VBS doctors believe a 10 degree progression of a curve in the first year post stapling, would be considered success. This is just plain wrong. VBS is beholden to the SRS. Many of the standards for VBS are the same as for bracing. Like what degree of progression is considered success. I think it's 5 degrees. That is the SRS standard. FYI, most parents I have spoken with whose children have had VBS, had total stabilization of the curve. Many have gotten correction. Significant correction!!

These doctors know each other and consult with each other. That is why VBS is coming on so strong now. So many prominent doctors believe it is a great option to bracing. VBS is being recommended now by top docs and many of these surgeons are beginning to perform the surgery themselves. You seem to think that the VBS doctors are just operating out of someones garage. Hello...have you heard of Shriners?? The standard at all Shriners Childrens Hospitals are second to none. In Fact, many Shriners Hospitals lead the way!!

I think you are just the type of person who likes to stir the pot. There is always one in a group. It's just not fun because you do a disservice to many who are new to their scoliosis journey.

Stephanie

[txmarinemom]

I didn't dig up letters - because I have NO inclination to figure out your neuroses, nor do I have ANY idea what your aversion to *VBS* involves.

I watched this thread/asked questions (as a person who's LIVED with scoli for 30 years), and YOU have alternately ranted (piously)/pulled the "it's all in good humor" (comical, I believe, was your term) bullsh** throughout ...

You're far more transparent than intelligent - or tolerant. But best to you, dear.

(Isn't that how YOU gloss over slamming someone? A bit of good will, eh?)

Done here. Bigger fish to fry (my *own* surgery).

[txmarinemom]

And just what do YOU consider an insult, Celia? I'd really like to know.

Carefully peruse this thread, and the cause/effect of your OWN words. And the restraint most exercised to hold their tongues at YOUR posts.

And I am STILL *lmao* because I just started posting here you believe I'm some "plant" ... and in your words "Yes!!.." I'm faking AIS because "you haven't corresponded with me"???.

As IF I have ~nothing~ better to do with MY time than gather info for MY surgery.

Get a HOBBY, sweetheart. You've got *far* too much time on your hands.

Pardon me for intruding on your realm.

[stephanieC]

Gerbo,

Here is how the VBS procedure was explained to me.

After anesthesia, the surgeon will work on the spine to undo some of the rotation by manipulating the spine. 4 to 6 small incisions are made. A camera goes in to guide the surgeon(obviously a very small camera.) The staples are soaking in an ice bath as that will keep them straight. The surgeon guides each staple in and places one on each of the affected vertebra. When the staple reaches body temperature it clamps in and braces the vertebra.

The procedure for one curve takes about 4 hours. The idea is that the staples will hold the curve. I can't remember specifically but I think the grow plate on one side is slowed a bit while the other is promoted. Not 100% there. As the spine grows the staples keep the convex side stable. There is no loss of mobility, no loss of flexibility and overall growth, (height) is not thought to be affected. The hospital stay varies, but on average it is five days. Recovery at home is generally two to three more weeks. After a 6 week check up, the child can return to full activity. The doctors continue to monitor the patient until they reach maturity maybe a year or two longer.

Again, this is my understanding. I may have missed a detail here or there. One child was well enough to go back to school one week post op. I think her mom sent her for a few half days just to be on the safe side.

I hope this helps, :)
Stephanie

[mariaf]

Hi Pam,

I just realized that with all the "humor" lately, I didn't wish you well on your upcoming surgery (that IS why most of us - at least those of us who are rational - believe we are all here, right?).

I see you were braced; and I'm guessing that maybe you ended up with a borderline curve that they did not recommend surgery for? My husband also has a LOT of pain from a few bulging/herniated discs (not related to scoliosis) so I know just how painful that can be. Maybe things happen for a reason - they've come SUCH a long way from the old Harrington rods to the methods used in fusion today. Hopefully, your recovery will be very smooth. You're obviously a strong, smart woman and I truly hope you continue to post here.

Funny, my dad has always said he learned a lot in the Marines. I must ask him if he ever heard the phrase "there's always one" :)

Hi Stephanie,

From what I've learned over the past four years, your understanding of VS is very accurate. Yes, the staples do stop (or slow) the growth of the one side of the vertebrae so the other side can "catch up" (theory being that in scoliosis one side of the vertebrae is growing more than the other). That's just one of ways the staples are effective.

Renee from the VS site said that when her husband was there with Sam on Tuesday they met a girl who'd had the stapling 5 years ago and said it was the best thing she ever did because she's been able to do cheerleading, gymnastics, whatever. What I REALLY liked about hearing this is that the girl was now 15 so she probably passed her growth spurt (my daughter 1s 16 and has grown very little, if at all, in the past year or so - she's 5'5" so I assume she'd done growing).

Like I always say, there are NO perfect options with scoliosis. There is a down side to just about everything in life for that matter.

That being said, for kids like this girl (and my son who's nearly 4 years post-op), the vertebral stapling has been a Godsend.

By the way, there probably isn't a question about the stapling that I haven't asked the doctors over the past four years which is why I feel somewhat capable of answering questions when a new parents asks :)

Take care,

[stephanieC]

Hi Maria,

I did read the post on the VS support site where Renee said the young girl was five years out from her VBS. Apparently, she is at a 10 degree curve now and doing awesome!!

More and more success stories!! :)

:) :)
Stephanie

[amandap]

Hi Maria, Stephanie, Pam and scoliomom456,

You guys rock!

Stephanie ~ What a great post, you have only helped confirm my claim that people with real experience can share real advice. I honestly could not not advocate or negate something I know about only by what I've read because I would hate to misinform someone on a viable option for their child.

Pam ~ I just "met" you yesterday and I'm loving you more and more ~ thanks for sharing your opinions. I too feel it's important for parents to get as much info as possible to make an educated decision I just really HATE that Celia responds to people with so much negativity ~ she really does not "get" the fact that her posts do scare away newbies, especially those dealing with newly diagnosed children. It is such an emotional time and parents they are so very vulnerable that they just don't need that. I wish you luck with your upcoming surgery and recovery ~ I will keep you in our prayers and will send good vibes your way ~ which should get there pretty quick cause I'm only in Austin.

Scoliomom465 ~ I honestly believe that at some point Celia was either misinformed about the procedure or just in her warped mind worked it up to be more that what it actually is so now she bashes it because it wasn't the end all procedure for scoliosis. She has never even taken her daughter for a consult regarding VBS which I don't think her daughter would qualify because her initial curve was alredy at 60* and they don't staple over 45*~ maybe that's the problem her daughter can't have it done so because of this she doesn't want other kids to benefit from it.

Maria ~ we'll just keep on trucking and maybe send Celia a x-mas card with a few bucks so she can go to the .99 cents store to buy a life ;) ~ ha ha ha ~ I just loved that one so I just had to use it.

Hugs to all ~ A

[gerbo]

seems to be an unneccesary amount of "ganging up" and personalised attacking going on here, sad really as we should be able to discuss issues and expressing opinions without fear of personal insults.

Everybody here has their own issues but also must remember that we all have a personal cross to carry.

[txmarinemom]

I see you were braced; and I'm guessing that maybe you ended up with a borderline curve that they did not recommend surgery for?

Thanks to all for the well wishes on surgery. I don't yet have a date set, but I assume when I go for my 2nd appt with Dr. Hanson on Dec 4th we'll start working on pre-op tasks like autologous blood donation (if required) and he does want to get a lumbar MRI to check for degeration below my curve.

And, yes, Maria ... I was Boston braced (I was not a compliant patient) from almost 11 to about 14.

My old films are long gone, but I *think* my thoracic (structural) curve was about 35° when I was diagnosed. It's held steady at ±50° (staying within the ±5° variation for the Cobb) in adulthood. The curve isn't progressing, but the pain is. Hanson estimates a 70% chance of significant pain relief with the posterior only fusion and instrumentation - and correction down to ±20° of the structural T curve, and near elimination of the compensatories.

This isn't the first option I've explored, nor did I make the decision lightly. Over the past 10 years I've seen every trick in my pain mgmt doctor's arsenal (a few times), tried myofascial release, accupuncture, you name it.

So, for me, the choice of A) expect to stay like this - and maybe even worsen ... all the while getting older, or B) surgery and a 70% chance of relief?

I'm at a point where those odds are just to good to pass up.

Regards,
Pam

[stephanieC]

Hi Gerbo,

You are absolutely right. People should and do come to this forum to discuss there scoliosis issues. People come with their own beliefs and personal experiences. These are what we share with each other.

Celia sometimes makes good points. However, go back and read page 1. As we were having our discussion, Celia gets sarcastic, flip and posts outdated information that is now misleading.

Others "gang up" as you say, because they too feel passionately, they too want to put forth what they know and, get very upset when someone advises on something they have never really taken the time to research. Frustrating.

As I have said before, spine cor is a wonderful alternative to hard bracing. I looked into it myself extensively. Looked into VBS extensively too. For me, VBS seemed the way to go. Interesting though is that spine cor and VBS have very much in common in their philosophy. That is, let's keep things flexible. Let's support the spine during growth and through activity. Let's strengthen the back and continue to allow a child to have freedom of motion. VBS and spine cor are cousins...no?? One is external one is internal. Both need more time to gain acceptance and recognition. Both are gaining momentum in the US anyway. (I just don't know about other countries)

I can also tell you that the doctors behind spine cor and the doctors behind VBS are equally compassionate and passionate about what they do. Both sets of doctors 100% believe they are doing the absolute best for the children that they see!! This is why parents need to be open minded and do their research. One option will sit better depending on a persons own beliefs and philosophy.

Sincerely looking to provide true and honest information while learning from others,
Stephanie

[stephanieC]

Pam,

You sure are going down a long scoliosis journey. I hope you find relief from your pain in this surgery.

You are the pioneer that will yield the information to provide help and knowledge for all our children now. We hope their curves are corrected as children. But let's face it, many of our children will progress. will need surgery at some point in their lives.

Good luck on Dec 4th.

Hugs to you,
Stephanie

[mariaf]

seems to be an unneccesary amount of "ganging up" and personalised attacking going on here, sad really as we should be able to discuss issues and expressing opinions without fear of personal insults.

Everybody here has their own issues but also must remember that we all have a personal cross to carry.

Hi Gerbo,

I know Celia is a friend of yours, but she is the one who started slinging the insults and has had this coming for a LONG time. How much do you think people can take before they lash back?

I have nothing but respect for you, Gerbo, but I find it impossible to fathom that you don't see that she brought this on herself - antagonizing, insulting, using sarcasm constantly with ANYONE who mentions the word "stapling".

Enough is enough. We're on here trying to help new parents and she just goes on and on with her opinions. She doesn't advocate stapling - we get that. But is it OK if somebody else wants information about it for their child? Or is this Celia's forum rather than NSF? Because apparently if she's not in favor of something, it can't be discussed in peace. (Hence, the VS support site).

We all exercised a LOT (understatement) of restraint with her in the past - but I guess folks just got tired of holding their tongues; or perhaps we have some new fiesty members (God bless them!) who are not afraid to stand up to her.

All I can say is it's about time.

[gerbo]

but I find it impossible to fathom that you don't see that she brought this on herself - antagonizing, insulting, using sarcasm constantly with ANYONE who mentions the word "stapling".

Trying to stay objective about this, and considering I might have missed something along the line, I did a search on the topic of "stapling" and found posts going back to 2005 from Celia even encouraging people to look into stapling as an option and expressing a genuine interest, and even this thread started that way. However, as soon as she urges caution (the same way as I would do with regards to anybody considering spinecor) people appear to start getting very upset and taking it very personal, and most personal remarks appear to be aimed at celia, rather then coming from her.

As a rule, scientific progress is promoted by a critical approach, and we should not be scared of critisism, even encourage it and certainly not take it personal or "retribute" in a personal fashion.

[mariaf]

Hi Gerbo,

As I said, I respect you and try very hard, in fact, to respect everyone and their feelings.

But I guess you and I will have to agree to disagree on this one.

I have no argument with what you are saying about folks being allowed IN A RATIONAL MANNER to criticize a particular method of treatment.

However:

(a) Celia goes WAY too far, bringing up that same article over and over and over and quoting ONLY parts of it (as another member pointed out) so as to be misleading; and

(b) can you name ONE other method that is attacked EVERY time it is brought up? Just as an example, a lot of folks have told me they think casting is barbaric. They're entitled to their opinion I'm sure you'd agree. But if somebody else wants to cast their child, at least they can discuss it here without constant NEGATIVE interference from people WHO HAVE NO PERSONAL EXPERIENCE IN IT. Again, I'm just using this as an example and I'm not stating an opinion on the issue.

Celia is doing a great disservice, and I swear to you SEVERAL folks have told me they don't come on any more because they want to have discussions with people with PERSONAL EXPERIENCE without constantly hearing negative comments over and over about a method they are considering for their child. These parents are making a painstaking decision - THEY DON'T NEED THAT!!

Yes, Celia can have her opinion and EVERYONE knows what it is - but leave it be already.

For God's sake, Celia accused Pam of being a plant!!! Pam just started posting here but because she had the nerve to have a different opinion than Celia, and "never corresponded with Celia before", she was accused of masquerading as someone else??????

You can't possibly tell me that you agree or that you condone attacks like that or that folks should have to defend themselves against such insane accusations, can you?

Again, we don't need to see eye-to-eye on everthing. I respect you and wish you and your daugher all the best.

Regards,

[gerbo]

Celia can have her opinion and EVERYONE knows what it is

I think there might be some misunderstanding here which seems to have an inflammatory effect

one way round this would be for you to define what you think Celia's opinion is, and for Celia to say what her opinion is, and compare notes.

re other "methods" being subjected to "critical appraisal" (or "attack" as you put it, and feel it I suppose); chiropracters and SI practitioners usually have a very hard time here, anything more alternative than those don't seem to have a chance at all, most forms of bracing (including spinecor) have been and are still looked at critically. (for that matter, my "chosen" method, spinecor, is the one I look at most critially of all)

and for the record; i think this stapling is fascinating and will follow further developments with regards to this technique with interest. Suppose it really needs a spine with lots of growth left to work? Ofcourse, nobody in the UK is doing this anyway, so interest will have to remain academic......

[mariaf]

Suppose it really needs a spine with lots of growth left to work?

Yes, Gerbo, one of the criteria in order to be a candidate for the stapling is that the child must have a considerable amount of growth left to do. I know several children who were told they were not candidates because they were almost done growing.

And I agree with you that we, as parents, tend to look most critically at our own method of choice. After all, that's where the stakes are the highest. Before we decided on the stapling for David, I played devil's advocate in our house, questioning, researching, talking to other parents and just agonizing about the decision over and over again. (Ultimately, we decided it was the best option available to us.)

That's why I say that I don't think parents need to hear someone bringing up what THEY feel are the negatives about it over and over on this forum - Believe me, as someone who has been there, before you put your child on the operating table, the decision weighs VERY, VERY heavy on you. Nobody makes that decision lightly.

As far as doctors in the UK doing it, it will happen eventually - I'm just not sure when. Within the past year or two, stapling went from being primarily done in Philadelphia to now being done in Los Angeles, Atlanta, Boston, etc. AND several folks have said their insurance companies covered it!

[structural75]

Hi Folks,

I don't want to step into the middle of this one, ...been there before and it's not pleasant.

I do want to say a couple of things though seeing as I have been on the receiving end of constant opposition and such.

I wish all the families involved in this vertebral stapling discussion the best in whatever they choose. These folks, and others in similar shoes, are surely thinking long and hard about their options. And they're considering something that doesn't have as widespread acceptance as other surgical methods. Those are people that really need the support right now. They don't get the automatic reassurance that there are thousands of others who have been there and gotten through it OK. They are potentially making a brave decision to do something 'new'. I think we owe them 100% of our support for that.

The same should ring true for other anatomically and physiologically sound approaches, surgical or otherwise.

Mariaf - I can relate to a very small degree, as I've been bombarded by opposition with almost every post I've put up on non-surgical approaches. Although I don't compare it to you're situation by any means, I realize it's difficult. And I too wish that people can come onto this forum and learn about and ask questions regarding both surgical and non-surgical approaches.

Gerbo- I would obviously agree with your comment on chiro or SI having a hard time here... But I hope that somehow doesn't justify the hard time they receive. Being critical is important, but that means going well beyond the studies when evaluating their potentially relative application. If there is no room on this forum for "Non-Surgical" approaches besides bracing for instance, then why not just remove the category altogether and leave "Bracing" as the only non-surgical option?

Vertebral stapling began with an idea based on sound anatomical understanding and technology... . I think the Doctors are the only ones at this point capable of debating its potential viability or success for each individual.

Best to you all.
Structural

[mariaf]

Vertebral stapling began with an idea based on sound anatomical understanding and technology... . I think the Doctors are the only ones at this point capable of debating its potential viability or success for each individual.


That's very true, Structural. That is why every parent considering the vertebral stapling goes for a consult, usually in Philadelphia where they've done the vast majority of these procedures (although as I posted, it is now being done in several major cities by some very prominent orthos). The parents I've spoken to are extremely well-informed and ask the doctors some very tough questions (a few that I hadn't even thought of!).

Some kids are turned down and are not stapling candidates (not enough growth left, too large a curve, etc.). But if, after looking at x-rays and taking the child's complete medical history, Dr. Betz and his colleagues believe a child has a very good chance of success, then they are offered the stapling. Thus far, the results have been excellent. Is it for everybody? No. Is it a great option for many? IMHO, yes.

If one's child is a candidate, the next thing the doctors say is "talk to some other parents whose kids have been through it". To me, that's a very good sign. I find it comforting when a doctor wants you to talk to their former patients. They don't sugarcoat anything about the procedure and have nothing to hide.

Bottom line - every parent should be entitled, after careful consideration, to make their own decision for their child (whether they decide on stapling or another method) free from excess negativity or scare tactics. I can tell you from personal experience, these are not decisions that anyone is making lightly.

Thanks for your support.

[structural75]

You're welcome... . Well said by the way.

[stephanieC]

Hi Structural,

I had started a thread a couple of days ago and am still looking for some information regarding alternative therapies.

I would really appreciate your opininon, as well as the opinion of others who have had some experience with any type of alternative therapy. (when I say alternative, I simply mean no surgery and no bracing)

I am looking for info regarding my second daughters current situation.

I really do not wish to post on this thread anymore. Would you mind answering in the thread I had started? I would really appreciate it. The thread is under idiopathic, juvenile,and is titled, Have alternative therapies shown effectiveness?

Thank you,
Stephanie

[milesmom]

Hi

After perusing this VBS thread, I had some thoughts to share. Maria F brings to the table some very real points regarding the importance of being sure that comments made here do not sway or scare those who are new here, scared, unsure, and looking for support and advice.
Let me backtrack to my first visit (and only other than this) visit here. It was a few days post my son's diagnoses. I had not yet begun my own research--and came here for support and advice. We were preparing to put our then 15 month old into a brace. I posted, and below is an exerpt from Celia Vogels reply. (The entire post can be referenced in archives):

***"Actually, bracing has been proven ineffective for infantile scoliosis. There was a study by Dr. Min Mehta which showed that children who were braced instead of casted for benign progressive infantile scoliosis during the first three years of life - eventually *ALL* progressed to surgery levels and required spinal fusion at some point during their growth. The article is entitled "Infantile Idiopathic Scoliosis" by Dr. Min Mehta"**** (end quote)

Although the abstract which this was taken from exists, it is dated and biased, as Mehta specializes in serial casting.Bracing typically is a starting point for all scoliosis patients and to reference an abstract which suggests that it does not work is absurd. Cases vary, of course but to make those your welcoming words? Another personality type may have taken this seriously and not followed through with it, or become convinced that serial casting would be the only course of treatment. The bottom line is that the choice of responding words from Ms. Vogel indeed scared us as parents, and confused us as to the role of the "support forum". I never returned, and thankfully found a group of parents who better provide simple, unbiased SUPPORT. I agree with the poster who stated that clinical speak, and procedure debates are best left to the professionals, and at least the parents who have actual experience with any said procedure. It is unfair and selfish to demean a viable option simply because it may not be the right answer for your particular situation. In summary, yes..overheated and underthought opinions can indeed scare newbies away from a site meant to help them.
I would like to also address the debate regarding VBS being experimental. Lets go with new. It is a relatively new procedure. Bypass surgery..organ transplants..even plastic surgery were all once new, but can we all not take a moment to reflect on someone close to us who these procedures have saved or dramatically increased the life quality of? Likely. I'll suppose that within the last year, anyone reading this has tried either a prescription or OTC medicine which has been new to the market, and gained cure, control, or relief from it. These examples pale in comparison to the weight of parents deciding on VBS for their child. That is my point. There is no room for anyone to discredit such a viable procedure, then to use the excuse of being "strongly opinionated" when they dont like the feedback from parents who have lived it, and whose children's lives were improved because of it.
In close, I was sorely disappointed to see that anyone would find "humor" or "comedy" in the situation of scoliosis, or any conversations regarding it. I must say that speak such as that makes a mockery of a site where I see others doing there best to advise and support one another. There is often "that person" in any given situation, who takes pleasure in eluding that they know something about everything. What they do not seem to see is that, to others...it really shows.I can only hope that no family new to this would go soley on the advice of one who, while ON here alot...may offer limited, dated and opinionated advice, and that they do scores of their own research, as well as consult with top professionals.
I commend the posters like Maria, Deshea, Amanda and Stephanie..who bring experience, caring and compassion to this, and other ( less combative) support forums. Keep doing what you are doing ladies, as you have touched the lives of others is such positive ways. Thank you, and well wishes to all.

Best,
Adele
mother of Miles (2)
35* curve----26* after BRACING
VBS tentative for 2008, with DR BETZ
Mom of Allie(12) and Ben (10)

[gerbo]

I think it is clear that different parents have different needs at different times of the whole journey we all have to get through. Some people want their own opinion confirmed and enforced, and who can blame them as at least it provides a bit of security in this whole territory where the only certainty is that nothing is certain. Others will want an as wide as possible range of opinions as only with those in hand one can really come to an as balanced and realistic position as possible.

Some people need serious and very considered posts, whilst others are happy to share some happy events and at times have a bit of fun, as a bit of humor makes it easier to cope with what at times is a heavy burden. Nobody here will take scoliosis lightly, we all have come through too much, but at times we do try to take ourselves and our life with a pinch of salt and even dare to smile.

some people want and need to put themselves completely in the hands of their doctors, and fortunately that is often valid, whilst others have discocered through experience that their doctors were just not interested, not up to date, dismissive andfelt that the only way of achieving treatment to a hhigh enough standard for their child was by really getting involved themselves, study, learn and challenge, just to try to push the bounderies of what can and cannot be done a bit forward.

The trick here really is to take account of the fact that 100's of people with different backgrounds and experiences will post answers to replies and somehow you need to work out what helps you and what doesn't, but also realise that a bit of information that doesn't suit you at this stage might be very useful for somebody else, and even could be useful to yourself at a later stage, and that the person you feel you cannot stand at the moment might give you the key bit of information later on which could make all the difference to yourself or your child.

[Celia Vogel]

... ....In close, I was sorely disappointed to see that anyone would find "humor" or "comedy" in the situation of scoliosis, or any conversations regarding it. I must say that speak such as that makes a mockery of a site where I see others doing there best to advise and support one another


Why don't we just start a separate thread entitled "What we don't like about Celia Vogel"? ;)


What I found humorous was Amanda's post juxtaposed with the one I had made immediately before that! My plea to question authority and not put blind faith in the medical profession because as we know it's a prescription for disaster as is evident by so many children with progressive infantile scoliosis whose lives have been destroyed by well meaning/uncaring misinformed doctors!!!! It's a tragedy! Don't get me wrong, I'm not saying Dr. Betz is uncaring and misinformed. He's an AMAZING doctor! Amanda retorted by attacking the spinecor brace and the doctors in Montreal! UNBELIEVABLE!!!!! This I found hilarious!

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!

[txmarinemom]

I agree personal attacks have no place - just like misinformation - on this board.

Neither does warped "humor", righteous indignation, accusing someone of being someone else, or a victim mentality from someone who claims persecution - yet wields a very large spoon of their own.

(And, BTW, if I see if left out a comma or didn't adequately express what I wanted to convey, I *might* edit this post. That's neither here nor there.)

I happened upon this thread because the science - and the concept - of Spinecor, VBS and what might be available NOW for children was of interest. Some of you don't understand how many more choices you have - and what a Godsend my *mother* would have found in being able to discuss what was happening to MY body without blindly following what my ortho dictated for treatment.

What it boils down to is this: Every parent gathers every bit of *factual* info they can to help THEIR child (very different options than MY parents had ... would you like Milwaukee, Charleston, Boston or Harrington?); and no different than I'm doing for myself as an adult.

Someone called me a pioneer: I don't see it that way. Your children are the true pioneers.

My case is nothing more than the result of conventional treatments that failed in the 70's for some. I will say adult surgical techniques have progressed tremendously in the last 10, 20 and 30 years. Someone told me in a way I was fortunate I didn't *have* surgery years ago ... and I'm very inclined to agree.

It's my fervent wish the long term efficacy of Spinecor, VBS, and other new treatments will prove out. I hope the choices for treatment grow ~exponentially~ in the near term.

Even better would be continued gene identification and possible earlier detection/prevention of scoliosis.

I've lived with this condition for 30 years (I don't remember my back not hurting since I was 10), and I'd like nothing more than this board to someday be without reason to exist.

Regards,
Pam

[txmarinemom]

Celia, could you edit your post again? I believe that last "adjustment" makes THREE times.

Every revision from you has eliminated a refererence (that immediately followed yours) in my post to what you originally wrote. Pretty ironic, I'd say, coming from someone who was recently screaming "people are editing their posts!".

Write the words, be an adult, live with them ... no matter how silly they make you look later.

Or just carry on ... anyone who's been following this thread knows you've changed the *entire* content of your original words.

Note ~mine~ *hasn't* been edited. And it stands in response to your *first* pass.

Transparency is SO unbecoming.

Regards,
Pam (who's spine may be crooked, but at least I HAVE one)

[mariaf]

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!

Celia,

Can you point out one instance where ANYONE EVER attacked (or even mentioned) your daughter???

Are you so desparate to make some of us look bad that you are simply making stuff up?

I really had no desire to return to this discussion, but seeing you falsely accuse members of verbally attacking your daughter was a bit much for me. Someone asked you earlier in this thread if you actually read what other members said - or if you just posted. After this false accusation you made, I am inclined to think it is the latter.

[txmarinemom]

Oh, hell ... does this mean I have to go edit a post so she has proof? I'm really busy right now ...

[txmarinemom]

... additionally, I'm short on funds ... and a pitchfork is NOT in the budget. Will a serving fork suffice?

[Celia Vogel]

The content of my post is exactly the same as before. I edited for spelling. :o

[txmarinemom]

Right.

Who am I to argue with the voices?

[txmarinemom]

Do what you need to do, Celia. And bear in mind I have all YOUR original posts copied. Persecution/perceived tattling doesn't always fare well, IMHO.

[txmarinemom]

Celia .. .tsk-tsk ... you deleted your post just before my last one.

Let it live on in infamy.

Celia wrote:

" #77 Today, 08:56 PM
Celia Vogel
Registered User Join Date: Mar 2004
Posts: 1,091

I'm reporting you to Joe O'Brien! You are absolutely foul!
__________________

Canadian eh

Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by

Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with

the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008 "

[Celia Vogel]

That message was intended to be private and not public. Nevertheless if you want people to see it, that's fine.

[Singer]

Ladies, ladies!!

Every one of you should be ashamed of yourselves, carrying on this way. The anonymity of the internet does strange things to people, I've found -- it gives them liberty to say things I doubt they would ever say face-to-face.

To paraphrase the words of that immortal philosopher, Rodney Jones: "Can't you just all get along"??????

[milesmom]

POST #1....

These personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality.
edited 8:58am

POST#2....

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality. It's shameful, and a disgrace.
edited 11:32am

POST#3....

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!
edited 5:18pm

[gerbo]

SIGHHHHH........SAD THAT PEOPLE JUST FEEL THEY NEED TO GO ON AND ON........, please, can the moderators cancel this thread and suspend anybody posting on it for at least a month!! Bit of peace would be nice

(yes, but she started, no she started, honestedly she did, no, no I am sure it was her there who started it, blah, blah, blah, how childish!!!!)

[scolimom456]

Perhaps Celia should stick to the topics that pertain to her situation - not juvenile and not stapling from what I can figure.

I dont know why she is discussing stapling, it is obviously not something she is interested in or believes in. Some of us would like to learn about stapling from people who have spoken with doctors, or gone thru the procedure - not be subjected to scare tactics regarding something she isn't involved in.

[Celia Vogel]

I had to edit my post because YOU changed the order of your post so there was no continuity! It was evident to Gerbo and myself. Later on... I got the idea to add the "posse" and "pitchfork" theme to the mix, which I thought appropriate because many of you are stoking the coals of hatred and it really is a shame because I think I had some good arguments about vertebral stapling and at one time I was intrigued by the idea. Not knowing how to respond to the topic, many of you decided to lash out at me. This is irrational behaviour!


POST #1....

These personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality.
edited 8:58am

POST#2....

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality. It's shameful, and a disgrace.
edited 11:32am

POST#3....

I also noticed A LOT of editing going on days after some of the posts were made and these personal attacks directed at me and my daughter are unwarranted and hurtful! It basically amounts a to lynch mob mentality with Amanda, Pam and Maria leading the posse with the proverbial pitchforks in hand. It's shameful and a disgrace!
edited 5:18pm

[txmarinemom]

*yawn*.

Can someone wake me when the incessant yapping ceases?

[amandap]

Hello everyone,

I agree that the bickering back and forth is childish and a complete waste of time and have asked many many times that it stop. I too play into this because like Maria said it's very frustrating to see and read misleading information. I also agree tha Celia is very knowlegeable and is able to offer great advice to parents asking about spinecore or casting she has real experience and because of her relationships with those docs probably knows more than most both the good and bad.

I understand that Celia is not an advocate of VBS and that's fine, that is her opinion and I respect that; what I and other people on this group have issues with is that she scares people and when a parent is new to the whole entire scoliosis thing Celias posts are very intimidating. She is offering and quoting very old data and although she's done research she does not have the "real" experience that others do. I understand her posting to a newbie a kind word of caution but then leave it at that ~ I just don't feel she should go beyond that because she does not have true and accurate facts. I realize the articles she is quoting are real studies but they must be explained by the professionals. Those of us that have taken those articles with us to the hospital and discussed them with the drs would be better suited to expalain them but I choose not too because that is something each parent has to do with their physcians.

I am a huge advocate of VBS ~ for us and for our daughter it was the "lesser of two evils" and I would hope that everyone here would support that decision not bash or say that I am immoral or unethical for putting my child through that.

I am not an expert on spinecore or casting ~ yes I've read about them, I've seen case studies, and yes I have done tons of research but other than that l have no experience with either of the two and haven't even met any physcians who prescribes either of them ~ because of this I refrain from giving any opinions one way or the other.

I have always only asked Celia to please stop posting only the negative and to please please please stop scaring new people only asking questions because most of the time these parents are wanting reassurance that their kids are okay the final decision will not be based on what I or Maria have told them.

I can honestly say that whenever anyone has asked me about VBS I give them an accurate account of our experiences and am very quick to let them know that this is major surgery with major risks involved ~ I never ever sugar coat and I always refer them to Janet @ Shriners Philly.

I hate the bickering just as much as everyone else and really do wish it would stop.

Amanda

[amandap]

I didn't want to "edit" but wanted to add the following:

I feel that although we should all support one another and wish everyone and their child the best we should all also stick to offering advise to the topics we are all most knowlegeable in.

I anyone would ask me about spinecor or casting I would very quickly refer them to Celia because as a mom with a child who's been through both she can not only offer advise she can offer great emotional support becasue she's been there.

Amanda

[mariaf]

I can honestly say that whenever anyone has asked me about VBS I give them an accurate account of our experiences and am very quick to let them know that this is major surgery with major risks involved ~ I never ever sugar coat and I always refer them to Janet @ Shriners Philly.


Amanda,

I think it's a GREAT idea that if anyone is interested in the vertebral stapling but is now confused or doesn't have the energy to sift through all of the posts here (since we've gotten a bit off-track), that they contact Janet Cerrone at 1-800-281-4050.

As Amanda knows (but others may not), Janet is the physician's assistant to Dr. Betz and the entire spine team at Shriners. Janet has been involved with the stapling since its inception. She's extremely nice and a wealth of knowledge. Other than the doctors involved, she is probably the BEST person to answer questions on the procedure.

[gerbo]

why doesn't everybody who has "contributed to this discussion" commit themselves to removing their posts, which then can be effected as soon as everybody has confirmed they are prepared to do it,

[amandap]

Even if everyone agreed to delete their posts it wouldn't made much of a difference unless people agreed to change their posting methods and what topics to post to.

[mariaf]

AND what about all the information that would be deleted?? Isn't that why folks come on here in the first place??

Hopefully, everyone will now be a bit more sensitive in their posts going forward.

[stephanieC]

Gerbo,

what does cancel a thread mean?? Why would you ask for that?? I think the first few pages of this thread is very informative. Occasionally, on all the pages, if you read through the ugly stuff, you can find good information.( OK maybe not all the pages :rolleyes: ) I have read other threads where things have gotten ugly. But the post seems to go on and reach a better place. I would not want to see good information deleted?? Why should the moderator get involved and ban people?? These people, myself included, keep coming to this thread to see what people are saying. If they don't like it, stop coming, stop posting!! I think the thread has become repetitive and ugly, and anybody reading it from the beginning is sure to realize where everyone stands.


Why do you keep reading the thread (and posting on it) if you are so disgusted by it??

I have only seen the "reporting you to Joe O'Brien" thing once before... No shock...it was Celia then too. I wonder why Celia evokes such anger from people that words spiral to an ugly place and then she claims "persecution". Seems that is becoming her theme song. Perhaps the moderator should review that?!?

I think a thread about vertebral stapling is important to the NSF!! It is another option parents can research. The spine cor thread is like 160 pages now. That's great. People give and take information almost daily on that thread. Why can't we have that with stapling?? A lot of people have questions about stapling. Some people on this forum have really helpful information to give on VBS. Let them give it.

I hope anybody on this forum new or not new will ask their questions. The VBS moms are very thick skinned. We will continue to read and post on this forum looking to help others and be helped!!

Respectfully,
Stephanie

[stephanieC]

I have no intention of deleting anything I have said!! I stand behind myself and every remark I have posted. Let's just go forward from here

Stephanie

[Celia Vogel]

May I ask one teensy little question since I have been accused of posting "outdated misleading information"???? How are the studies "outdated" when the article was published 2 years ago? :p

Having had endless "discussions" with Structural75, nothing can faze me!

[txmarinemom]

Nice, Celia ... try to play off asking "a teensy innocent question", and finish it with a "sticking tongue out" emoticon.

Gerbo, YOUR buddy has NO intention of changing her tone, and she's made that *quite* obvious.

[amandap]

Two years almost 3 is a long time when it comes to "medical" studies ~ much of the criteria has changed.

I agree there is much relevent info for the entire thread to be deleted and aside from my "sarcastic remarks" stand behind everything I have said certain things were said/typed in anger and prior to my first cup of coffee.

~A

[scolimom456]

From my very basic understanding of stapling - 2 years has provided the time for many more children to benefit from vbs - so there is a lot more recent data. The stats from 2 years ago have been updated, as now about 200 kids have had the surgery.

Celia- why are you posting about VBS still? Is it something you are considering for your daughter? It doesn't sound like it, so why don't you spend your time in posts that you are interested in - spinecor and serial casting. I don't spend my time on serial casting because it is not an option for my child - if vbs is not an option you are going to consider why do you post here? Your negativity is not helpful. You are not trying to have an honest conversation, you are simply trying to scare people away from learning about a procedure which may be very helpful for some kids.

[stephanieC]

because the results are very different now!! because the criteria is stricter now!! because more children, like 2-4 a month for the last two1/2 years, have been added to the mix!! because the percentage of successful situations including correction of the curve have increased!!

Perhaps you should have a consult with Dr Betz and ask your questions to him. Then you might offer some credibility to yourself!!

Respectfully,
Stephanie

[mariaf]

Stephanie is absolutely correct.

If we are going to delete the stapling posts, which - if you read through all the clutter - contain some excellent information, then why don't we just delete the Spinecor thread, and all the other so-called "ugly" threads. Heck, just delete the entire forum for that matter.

I think a much better approach is, as Stephanie said, to ALL just move forward in a better manner. Doesn't that make more sense? How can we not respect Stephanie's feelings on this when not long ago, she WAS the newcomer, scared and seeking information - and I know she's glad she found it. Isn't that why the forum exists?

As Amanda stated, deleting posts will do nothing anyway unless folks agree to be more sensitive in the future. I'm for this approach instead and have no intention of deleting anything because I think it is just wrong and would be a HUGE disservice to many parents who come on here seeking information. My main goal is to be sure they get it (and support as well).

Regards to all,

[Celia Vogel]

I didn't realize the emoticon had a tongue :confused: He just looks very happy to me. :D

[mariaf]

because the results are very different now!! because the criteria is stricter now!! because more children, like 2-4 a month for the last two1/2 years, have been added to the mix!! because the percentage of successful situations including correction of the curve have increased!!

Perhaps you should have a consult with Dr Betz and ask your questions to him. Then you might offer some credibility to yourself!!

Respectfully,
Stephanie

Thanks for clarifying some of that, Stephanie. Since I know you spent nearly an HOUR on the phone with one of Dr. Betz's colleagues from Shriners recently discussing the procedure, I consider this very VALID information.

Again, as I suggested above, anyone who is considering this procedure for their child should not hesitate to call Janet Cerrone. This way you will be assured of the most accurate and up-to-date information.

[amandap]

Just to add a little something ~

There is a young lady who has come onto our VBS support site she was the 19th person ever stapled when she was in the 6th grade and is now a SR in high school I am copying her post to show everyone here how much of an impact this has had on a real person who has actually lived it ~ not a parent but a patient of Dr. Betz.

About five and a half years ago, when I was in 6th grade, I was
screened at school for scoliosis. Unfortunitley, they found a curve.
Luckily my grandfather is a Shriner and they were able to take me
right away down at Shriner's Hospital in Philadelphia. I was kept on
close watch by Dr. Betz because my x-rays were showing my curve as
increasing at least 3 degrees each month. He and Janet left me with a
decision: to wear a brace that there was only a 75% chance would
help, or have the stapling done and only have to wear the brace after
for one month and could be back in the full swing of things one month
later. After a long and hard decision, I decided to go with it. I am
an active, outgoing, and perservering girl, i could do it. So the day
of my 6th grade graduation I had my surgery. Although I went through
a lot of pain those first three days after surgery, the nurses at
Shriner's hospital were more than I could've ever asked for. I was
back to playing soccer and doing all activities at camp within a
month...So how was my curve after surgery? Just three days after
surgery my curve DECREASED from 25 degrees to seven. At that time I
was Dr. Betz best success. The staples were only meant to stop the
curve from progressing but instead, helped correct it as well. Dr.
Betz even had a documentary and a collage of pictures done on me!

So where am I today??? Since my surgery, I have accomplished more
things than probably the average teenager does. About six months
after my surgery I took up cheerleading, but had to relearn all my
gymnastics that I had already known before. It didnt take long
though, it was like riding a bike! Later that year, I wound up making
Varsity Cheerleading at my middle school and played soccer as well
through eighth grade. In ninth grade, I continued with Cheerleading
and decided that I wanted to do a pageant. In November 2005, I
entered in the Miss PA Teen USA pageant. I wound up being 4th runner
up of 186 girls!! And the next year, I met someone else in the
pageant who had the same surgery done!! Now, almost 6 years later I
am a senior in high school, preparing myself for the long hall of the
real world. I cant even imagine if I decided to go with the brace,
where I would be today. Would it have affected my school work from
pain? Would i have been able to even carry a book bag? Would I have
accomplished anywhere near the amount that I have up until now? In my
mind, I dont think so.

For anyone whose/whose child is considering getting the stapling, I
stand behind it 110%. Although it can be very painful, somethings in
life are worth enduring. It will be well, well worth it after that
first month. No having to worry about the pain of still having
scoliosis, not being able to play sports like other kids, or how this
may effect you in school. This procedure is absolutely phenomenal in
every way possible. If you are really considering this surgery, DO
NOT BE SCARED! There is absolutley nothing to worry about!

If anyone has any questions, please feel free to email me at
[deleted for security purposes] . I would LOVE to help anyone who is on this
same quest I was on nearly 6 years ago.

This is just to show that although there may be failures even with one success it makes it worth taking a shot ~ I have said this many times should my daughter go on to need fusion then stapling was successful because she reached that point brace free.

~A

[milesmom]

See! Sans Celias blurbs, the forum seems able to recollect nicely!

Since I had mentioned that some info was outdated, I maintain that statement. SO much has changed in two years. These are two years that have meant so very much to Miles' prognosis, and our family's hopes. Rewind to a year and a half ago, when we decided we were not satisfied with Miles living out his youth in a brace. At the time, even Dr. Betz and his colleagues sadly informed us that he would not be a candidate until about age 5 or 6, at best. Then, as of last year, the procedure was performed successfully on a 4 year old girl..who thrives! Since then, other 4 and 5 year old children have recieved this procedure, and staple sizes have been reconfigured to fit smaller bodies. As it goes right now, Dr Betz, Ashgar, and Cerrone have informed us that indeed..the procedure only betters by the minute and by this time next year, Miles shall be big enough ( and the nickel staples small enough) to make him eligible for this amazing, quality of life changing procedure.
This is firsthand information from the pioneers of the procedure. It is amazing and wonderful that continuing research lends to even younger children qualifying for this procedure--thus saving them from the fear, anxiety and stress that I know some of the older children must endure. The success rates of the cases I follow, and the long term cases all fare so incredible well. I too, advise any new parents here interested in the procedure to contact Janet Cerrone at Shriners, and to Google ( or GOODSEARCH!) VBS and include Dr Betz' name in the search. ( just be careful of the materials dates)

[gerbo]

well, in the spirit of cooperation and openness; which published studies/ articles give more up to date information then the ones quoted by celia??

[mariaf]

Oh, I forgot to add this (and I don't want to edit my post)...but in addition to contacting Janet at Shriners, if anyone would like to visit our Vertebral Support site, here's the link:

http://health.groups.yahoo.com/group/staplingsupport/

There are over 40 members, mostly parents of kids who've had the stapling (or are waiting for a surgery date) and we just got a new member, an actual patient, now 17, who had the stapling when she was 11 or 12 and is doing wonderfully. There are also links, articles, first-hand accounts of the surgery, recovery, etc.

[milesmom]

Oh my. Well Gerbo, for the sake of parents actively seeking this route for their child, I'll repeat:

My share is that of firsthand, face to face information given to us by Dr. Betz, Ashgar and Cerrone over the past year and a half. I provided a detailed description of how, in this past year and a half, the procedure has progressed immensely. I was shown staple sizes, the original one size for all, vs. the newer ones for use on younger children. I have looked over slides of children who have had rods, VEPTr, and stapling as well...all in consideration of our own decision making. I have followed children who have had the procedure done ranging from 6-7 years ago..to current.

Also, as said, Janet Cerrone makes herself readily available to any and all who wish to call her regarding information on this, and all options. My note about googling publications was just that while available online, and easy to cut, paste and share one must be knowing and cautious of the date Of the materials, as new developments are not immediately published, and not as worthy as firsthand, Dr to patient updates.

I hope this helps!

[milesmom]

An afterthought. I thought I would share what I did have saved to disc. ( I honestly dont have a whole lot of time to look up new abstracts daily, my three keep me running, Im sure you all know that all too well!!)

Anyway, the latest I'd read was a ( rather limited and repetitive) 2007 abstract (link below).
Also, something else I found rather compelling regarding experimental treatment conversations, is an experpt from my Anthem subscriber handbook for 2007. (also below).

www.spinejournal.com/pt/re/spine/fulltext.


Aetna considers the following types of scoliosis braces experimental and investigational:

SpineCor Dynamic Corrective Brace
Providence Scoliosis System
Copes scoliosis brace
The Rosenberger brace.

Im not familiar with all of these braces. I wonder why only some are considered experimental?

[stephanieC]

OMG Adele you do more research then I do. :)

I see we are getting to a better place!! :o

Stephanie

[txmarinemom]

Aetna considers the following types of scoliosis braces experimental and investigational:

SpineCor Dynamic Corrective Brace
Providence Scoliosis System
Copes scoliosis brace
The Rosenberger brace.

Im not familiar with all of these braces. I wonder why only some are considered experimental?

I was very surprised Aetna considered the Copes system *anything* (see The Louisiana Atty General's Page (http://www.ag.state.la.us/ViewPressRel.aspx?RelID=449)), and my curiousity was piqued.

Here's what Aetna's "investigational" status means in the Copes case:

"Aetna classifies the Copes brace as investigational, which means that its insurance policies do not cover its use. Its clinical policy bulletin states:

The Copes Scoliosis Brace is a custom-fitted polypropene support structure that utilizes air to attain spinal curvature correction. This is achieved through the use of strategically placed pneumatic force vector pads that are adjusted every 4 to 6 weeks during treatment. The brace is generally used for 12 to 36 months in conjunction with hydrotherapy, regular muscle strengthening exercises, as well as chiropractic treatments such as osseous manipulation and muscle stimulation therapy. There is no scientific evidence that the Copes Scoliosis Brace is effective in treating scoliosis. Additionally, there are no published data concerning the long-term effectiveness of this device, the rate of recurrence of scoliosis after patients stop wearing the brace or the number of patients who eventually have to undergo surgical intervention. Furthermore, the Copes Scoliosis Brace is used in conjunction with hydrotherapy, regular muscle strengthening exercises, and chiropractic treatments. Thus, it is unclear what role the brace actually plays in the improvement, if any, of the condition [15]. "

[milesmom]

WOW!!!! I heard of that case, and indeed it IS questionable while the whole "operation was shut down" (so to speak)...that the said orthotic would still be considered at all in a current insurance handbook.
Even if it were viable, I imagine the stiff reg's of insurance coverage ins and outs would have it classified as some sort of physical therapy ( as related to the hdrotherapy part of it) which, in Anthems case is always so limiting.
Dont get me started on my Michael Moore soapbox speech about the healthcare system!!!
Very interesting addition, you know your stuff!

[Carmell]

In the SRS conference from Sept 2007, there are some good presentations on the VBS system (one presented by Dr. D'Andrea, at least). The SRS presentations are a good way to see the newest studies and documentation of research being done in the orthopedic world. This year's conference has lots of pediatric information.

Also, please remember that when YOUR child is the one affected by scoliosis (whatever causes or doesn't cause it) you become passionate about it. With new technologies there comes the need to make decisions. Even 20 or less years ago parents had NO choices. Kids were fused, or were allowed to progress beyond hope. Not an option, IMHO. Today, we as parents have more choices to pick from. We have to use our intelligence and common sense to find the RIGHT option, at the RIGHT time, by the RIGHT doctor/surgeon for our child. One size doesn't fit all anymore. In my Braydon's case, his condition was clear-cut - surgical intervention was required. Even then, we had a few surgical options to choose from (ie, VEPTR, growing rods (single or dual), more fusion, instrumentation, no instrumentation, etc.). It is heartwrenching. When its YOUR child you don't care much about anyone else, only finding the right solution for YOUR child. Places like this forum allow parents and adult patients to share experiences and hope to help other families be better informed before making potentially life-changing decisions for their children. When your child is in that unique/rare category, you don't have many places to turn for help and support. This needs to be one of those places - a safe haven, of sorts.

[txmarinemom]

With new technologies there comes the need to make decisions. Even 20 or less years ago parents had NO choices.

Thank you for addressing that point, Carmell - I said something very similar waaaaaaaaaay far back in this thread.

I was one of those kids who's parents had few choices.

The ONLY reason I started reading this (and the SpineCor/alt treatments) thread is to stay abreast of emerging techniques. I certainly didn't expect the hurricane that materialized.

The research and curiousity about scoli is just a habit for me: For years, I feared I'd have to face scoliosis - via the AIS familial link - treatment in my own children ... and I wanted to be armed with all the data available.

Thank goodness I never had to, but I'm equally as thankful there does appear to be some viable treatment options available.

As I also said before, I'm most encouraged by the identification of AIS genes. I hope the REAL cure is prevention - and no parent or patient has to clock the experience we've garnered.

Regards,
Pam

[stephanieC]

Pam,

you are absolutely correct!! Wouldn't it be great if they could identify what causes this idiopathic scoliosis. Imagine the ease parents would have?!?

Until then, we make the best decisions we can!!

Stephanie

[bpaul]

What are the implications to the growth of the spine post- VBS? I have read a great deal about this but have not seen this addressed specifically. As the staples function to modulate the curve through the natural growth of the spine, it seems to me that by extention, once a straight curve is reached and the spine continues to grow, the staples will either over compensate or constrain the growth of the spine.

I am sorry if this is a dumb question.

Thanks,

Paul