spinecor

[cherylplinder]

I listened to the tape.
The question to Dr. Andrea was this:
We feel we will soon have the capability to predict which curves will progress with genetic testing. If a young child (a lot of growth left)came in with a 15 degree curve and a positive genetic test, would you perform stapling. Her answer was "Yes."

Why did you call Celia a liar? That is exactly what she answered.

Celia's point, and she should not be crucified for making it, is that there is a viable alternative to this surgery that provides actual correction, i.e. the Spinecor.

Obviously it is up to each parent to decide which option to choose, and I might even choose stapling for Rachel if she progresses in the Spinecor, but parents should know that there is an alternative to VBS that provides permanent correction in many patients and may prevent progression and fusion.

You all are very pro stapling. I understand that. It is the option you have chosen. It is a personal choice.

But why do you so vehemently oppose any mention of Spinecor bracing as an alternative to VBS?

I think Celia passionately feels that each parent should be educated on ALL their alternatives or she would not continue to state these facts. I have NEVER seen a lack of integrity in Celia. I read MANY of her posts.

I think it is time to stop these vehement attacks every time she mentions that there is an alternative to VBS.

I feel no animosity or condemnation for anyone on these forums. You are all parents doing the best for your children that you can and supporting one another.

Celia is a valuable and wonderful member of our forum and this seems like a vendeta against her. This is a Spinecor thread. You all are interrupting my converstion with your attack. Do you read everything Celia posts everywhere?

Lets allow everyone to speak their opinions without attacking them.

I think that is all she is trying to do is provide a balance of information. And information is just that........information.

[gerbo]

this was a factual and polite discussion up till post 2459 and just an exchange of information and views without any attempt to scare or bully anybody into any particular position. This changed with post 2460 and 2461 and further posts which became very personal for no reason but the strong feelings people have about this subject, and the strong personal feelings some people have developped against one particular member, from there it went inevitably downhill once again.

Please "staple-mums", you are genuinly doing a good job in providing information about what appears a exciting treatment possibility, but try to stick to a factual exchange of information without the personal bits thrown in.

we all can get a bit worked up at times, and dealing with a child with scoliosis is ever so hard and stressful, but let's direct our frustation, anger and energy at fighting the common enemy (scoliosis) and not each other.

[stephanieC]

[QUOTE=Celia Vogel]Well guess what???!!! With 20/20 hindsight my daughter's chance of progression was 100%! I am thankful and grateful that I had alternatives besides surgery and I certainly hope this holds true for future generations because the way things look right now with the BRAIST study underway, people travelling huge distances to get the Spinecor brace because only a handful of orthopaedic doctors carry it and the rest feign ignorance about it's very existence, people complaining they just can't live with braces or that casting is barbaric (yet it works!!!!) etc. etc....our grandchildren won't have any other choice but surgery. Is this what we want?

Celia,

Most of us do not have 20/20 hindsight yet. 20/20 is great when your child is in the success column. What does the mother of the child with 20/20 hindsight feel after casting or spine cor or VBS has failed for her!! 20/20 is only reassuring when it has worked for you!!

If casting works and spinecor works and VBS works and rolfing works, some people feel vestibular testing and treatment works...great, each person does their research and chooses the treatment that sits best with them. That is how it should be.

There will always be choices because even the doctors can't (and shouldn't) agree on one treatment. Spine cor and VBS do the same thing, work with the same principle. It is the philosophy of the internal brace vs the external brace. Only time will tell if one is "better" then the other. Both have success and both have failures. That doesn't mean too much. Scoliosis is different for each person who has it!! The genetic testing may lead us down the best path...prevention. Moms who have chosen VBS and moms who have chosen spine cor and moms and all people who have an interest in scoliosis, will agree....prevention would be best.

Spine cor is an excellent brace. I researched it long and hard myself. I contacted doctor Rivard and had a very lengthy discussion with him. It's a great option that may offer a chance to correct the curve. I simply chose a different great option.

I think it is obvious that you and I do not have the same parental philosophy!! You see surgery as a "last resort", I see this surgery as a proactive choice that I believe gives my daughter the best opportunity for a successful outcome!! I do not hold the same fear and anxiety about surgery as you do. I do not think surgery should be taken lightly by any means but many, many great things come out of surgery.

It is the way you mix truthful statements with negative opinion, and shift and manipulate little items, and imply little things and use sarcastic humor and whatnot, that stirs such angry responses. Wrong or right you 100% contribute to the "ugly" on the forum.

This thread is not the place for this discussion. Someone just said that. That is correct. I understand that this thread is a spinecor support thread. I will respect that and make this my last post here.

I only ask that when there is a support thread going for VBS could it be just that too, a support thread, a place to gain some insight into VBS and learn about the children, their stories, the doctors, and where to go for help or a consult. Maria keeps inserting the site of the stapling support group because she wants new parents to know there is a "safe " place to go for information, where you won't be attacked for asking. However, parents should be allowed to ask and receive information here on the NSF as well!!!

Stephanie

[stephanieC]

Sorry, in my last post I tried to quote. I obviously don't know how to do the quote thing right!

Stephanie

[Celia]

Yes, where parents can hear the same sales pitch "to run, don't walk" to the Shriner's in PA and get a consult with Dr. Betz and call Janet before it's too late! Your child may not be a candidate! Time is running out on this limited time offer! So Hurry! Precious time is wasting!

The moderators at the vertebral stapling site should also add to the above sales pitch:

Operators are standing by to take your call and if you call Janet right NOW to make an appointment with dr. Betz... a lovely fruit basket with a decorative floral arrangement will be sent to you as our thanks!

[Celia]

Cheryl,

I'm glad to know I'm not the only one whose hearing and comprehension is still intact when it comes to listening to SRS webcasts! Thanks!

[amandap]

Cheryl,

I called her a liar because she is. Celia's answer was

Yes! Dr. D'Andrea at the most recent SRS meeting indicated that she would staple a child with a 15 degree curve as the first method of treatment.

Which was a complete lie ~ the questions posed was a hypothetical question involvoing genetic testing (which is still not a viable option) Celia's post would lead people to believe that Dr. D'Andrea would staple a child who came in with 15* automatically and that is not the case. It was not an OVERWHELMING yes like Celia stated.

She takes what she reads and hears and turns it around to sound like something it is not, therfore misinforming people.

Celia yes ~ this spincor thread is about bracing and you were the one who brought VBS into the discussin with false information so of couse we have to jump in and correct your ignorance. You really should just stop mentioning VBS altogether!

Amanda

[WNCmom]

QUOTE: "The concept of spinal collapse occurs when the system (soft tissue including muscles, ligaments, articular tissues, ...fascia, etc.) can no longer provide sustainable support to the deformation of the skeletal system... in this case specifically the spinal curvature. Ultimately, gravity wins the battle... the forces imposed on the tissues from the weight of the body segments, angulations and so forth are far too great for the tissues to resist and collapse occurs.

As far as tissues themselves ("muscles") pulling the curve further... That's typically not the case unless there is an underlaying neurologic deficit/component to the cause of the scoliosis. The muscles on the concave/shortened side actually become inhibited, as demonstrated by EMG testings, ... But the fascia that comprises the shape and 3-dimensional form and structure of what we call 'muscles' actually shortens to the resting length determined by the position of the spine. It is the inelastic collagen fibers of the fascia (which constitutes what we call a 'muscle' along with the cellular muscle fibers) that restrict the spine from lengthening out of the concavity. And it is gravity that continues to force the curvature further into its progression. As long as a curve in the spine is present, there will always exist the possibility for progression due to gravitational forces...

It is ultimately the tenacity of the 'cause' of the scoliosis combined with the adaptability, strength and resiliency of the individuals system that will determine whether it progresses and/or how fast. In ideopathic cases, bony deformity follows the progression, rather than dictating it. But once deformation happens, it takes more sustained efforts to reverse the process, ...so you will generally see a greater likelyhood of progression if left unattended.

The goal, in part, of SI is to provide the openings (freeing of those restrictions) so that the body can ultimately orient to gravity more efficiently... which it inherently wants to do as we see with children when they learn to walk and so forth. Working in the proper places will allow for this potential change to happen... working on the fascia in the 'wrong' places will send a scoliosis spiraling into further progression."

Structural:

Thanks so much for the above clarification. I knew I wasn't representing it quite correctly, and I appreciate your outlining the fine points so I can understand them. One question: I've heard a lot about forces of gravity on the spine. I'm not clear on exactly what that means--does it go beyond the inelastic collagen fibres of the fascia? Can you/would you elaborate?


Mary Ellen

[amandap]

Celia,

You truly are delusional. I wish I had some time to actually transcribe the question/answer.

Amanda

[gerbo]

I've heard a lot about forces of gravity on the spine

this is literally just the force of somebody's weight, creating a downward pull on the spine, which a completely straight spine can stand, but an already bend spine will struggle with it, and be more inclined to "give"

[amandap]

Gerbo,

this was a factual and polite discussion up till post 2459 and just an exchange of information and views without any attempt to scare or bully anybody into any particular position.

How can you say this was a factual discussion it was NOT!

Celia purposely misinformed flowerpower by answering the way she did ~ Celia flat out LIED and I'm tired of her BS I've been very polite and have tried to hold off but this is absolutely RIDICULOUS ~ how can you defend her?

Dr. D'Andrea never said that surgery was her first line of treatment!

I will say it again ~ Celia is a liar and there was nothing "FACTUAL" about her discussion prior to my post ~ the only thing "FACTUAL" about Celia is that she is certifiablly NUTS!!!!!!!!

We "stapling mums" would love to stick to factual bits of info if Celia would quit giving out bogus info that we have to clarify.

Since you seem to her "friend" please shed some light as to why she continues this huge injustice.

Amanda

[mariaf]

I was having a discussion with Renne before Maria et al. decided to join in. This is a non surgical thread so in the spirit of non surgical treatments I think we should keep the discussion on bracing and not vertebral stapling.

Celia,

Excuse me, but I didn't think I needed your permission to join the discussion - YOU do that all the time.

And please go back and read the posts - it was YOU who brought stapling into the conversation on the Spinecor thread, not me.

[mariaf]

Well guess what???!!! I am thankful and grateful that I had alternatives besides surgery...

That's my point - if YOU choose to keep YOUR daughter in the Spinecor brace for the next 8 or 9 years that is YOUR decision. It's not for someone else to judge or criticize or say "gee, Spinecor isn't proven" or "it's too new" or "the majority of orthos done believe that it's a viable option: or "several kids have gone on to fusion from the Spinecor". That's irrelevant - it is YOUR decision to make.

[mariaf]

The question posed to Dr D'Andrea was, If a patient came to you with a 15 degree curve and a known 97% chance of progression( known because the premise is futuristic in that a confirmed factual genetic test has shown this patient to have a 97% chance of progression.(get it?? it is a hypothetical question assuming genetic testing has confirmed a liklihood of progression to be 97% likely) Would she in fact do VBS? Her answer was not an "overwhelming" yes, as you stated but rather a thoughtful and well considered yes. Dr D'Andrea stated that if she could assume that the patient was very young with at least two years of growth left and this 97% PROVEN liklihood of progression, then yes, she would do the stapling. This makes perfect sense to me!!

Hi Stephanie,

Yes, that IS quite different from what Celia posted originally, isn't it? She seems to have NO understanding of the articles she is attempting to interpret for the entire forum. I'm actually glad she is urging folks to listen for themselves.

I guess we should not be shocked that she took a sentence or two from an 18 minute tape and presented it out of context so that she could bring stapling up YET again.

take care,

[WNCmom]

this is literally just the force of somebody's weight, creating a downward pull on the spine, which a completely straight spine can stand, but an already bend spine will struggle with it, and be more inclined to "give"

Gerbo:

So given this definition, intense physical therapy methods like Schroth relieve the force of gravity from the spine by/during the actual exercise, and that's one way the method works? Or does it rebalance the gravity load (during the exercise or as a result of strengthened or retrained muscles)? I've heard gravity spoken of several times in discussions of Schroth. One would guess that a spinecor brace is attempting to rebalance the load and retrain muscles. Just trying to wrap my brain around what all this means.....

Mary Ellen