Vertebral Stapling

[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]

Oh, and Celia ...

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,