Vertebral Stapling ~ 1 Yr Post Op

[Celia]

I don't know why you are so anti-stapling.

I'm not anti-stapling! I'm just stating a fact that it is experimental and an alternative to bracing and there is no guarantee that spinal fusion won't be required during the adolescent growth spurt. In fact... I know a few parents through the internet, whose children were not fortunate enough to avoid spinal fusion after the stapling procedure. If you have better updated stats then the ones in the two published studies, please share with the rest of us.


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[amandap]

Celia,

I agree with what Maria has said stapling is an ALTERNATIVE to bracing no one was given a guarantee when the procedures were done.

To be completely honest I feel you are truly doing parents who are merely asking a question a great disservice by turning them against something they know little to nothing of.

Please understand that all of the parents who's children have had this done know 100% up front that fusion is still a very real possibility down the line however it is just as much if not a greater possibility with conventional bracing. The best thing about stapling is that if any one of our children does go on to need fusion at least they were brace free and not confined to a hard brace only to still need surgery.

Dr. Betz as well as his entire staff do not sugar coat the procedure one bit they tell you exactly what is going to happen and yes it is orthoscopic surgery however it is still very invasive and yes our children's little bodies did undergo a great deal of stress and discomfort and not once did any of the doctors at Shriners every say to me, my husband or Lorena that this was a piece of cake no worries all is guaranteed.

Please Celia allow these new parents to ask questions and gain some insight before scaring them off.

Oh, and by the way spaling is NOT an alternative to spinal fusion.

Thanks.

Amanda

[mariaf]

Celia,

Now I have to ask where you have gotten your information - because to my knowledge no more than two or three kids (of dozens and dozens stapled) had gone on to fusion. Now you will probably say that's two or three too many - HOWEVER, for some kids there is NOTHING that will help them avoid fusion.

In the interest of educating folks, I am going to ask someone, perhaps in the research dept., at Shriners for the latest articles and statistics and will post same in the near future.

[amandap]

Celia,

I only know of 3 children who have gone on to have fusion and 2 of those children had underlying medical conditions contributing to their scoliosis; the third was one of the first who had the procedure done and is now 16/17 and his staples did not hold through his growth spurt so he had fusion but he was brace free for 6 yrs. And this information is straight from the physicians at Shriners.

Please enlighten me if you know of more; I'd be very intrested. As a matter of fact when Lorena was seen just a few weeks back we were told of two kiddos who had in fact over corrected because the staples were doing exactly what they were intended to do and one of those kids just had her staples removed ~ now that I find AMAZING!

Yes, it is experemental but it's working!

[Celia]

[COLOR=Blue][FONT=Comic Sans MS]
To be completely honest I feel you are truly doing parents who are merely asking a question a great disservice by turning them against something they know little to nothing of.

I'm all for the free exchange of information! One doesn't have to look to far for stapling failures... simply read the two published articles! Come to think of it, there is one parent who posted on the NSF not too long ago who wasn't fortunate and her post can be found here:


http://www.scoliosis.org/forum/showthread.php?t=5301

[amandap]

Gill,

Please feel free to email me at domingo_amandapompa@msn.com; I'd be more than happy to give you all the info I know regarding the stapling procedure.

Like Maria said she has started a support group for parents/kids who have either had the procdure done or is currently waiting to get it done.

They are all wonderful people.

How old is your daughter?

Amanda

[mariaf]

I agree with Amanda - if it's working, and folks are going in with their eyes wide open, I don't see a problem. If the worst thing we can find to say about the stapling is that is it "experimental", that's pretty good.

Every procedure being performed in medicine today was termed "experimental" at one point. And some of these are now regarded as remarkable advances in medicine. Some of these kids don't have ten years to wait - my son would have had to be braced for his ENTIRE childhood - so we, his family, weighed the facts and made the decision to go ahead with the stapling. No matter what the future holds, I will not regret making that decision which was the best option available to me at the time.

Celia - I know you mean well but I can't help but wonder if I would have heard you a few years ago, would I have been scared off? probably not - I'm too stubborn - but if I HAD been, it would have been a huge mistake in my son's particular case. Please just try to keep a more open mind - I don't agree with some methods suggested by others - but I keep quiet and let the parents on the receiving end of the information, who are intelligent and proactive, make the decision after getting and weighing all the facts.

[amandap]

Celia,

Hugo was one of the one's I was refering to I was just wrong as far as his age but he was brace free for 5+ years. A conventional brace would not have worked any better.

Amanda

[mariaf]

I'm all for the free exchange of information! One doesn't have to look to far for stapling failures... simply read the two published articles! Come to think of it, there is one parent who posted on the NSF not too long ago who wasn't fortunate and her post can be found here:


http://www.scoliosis.org/forum/showthread.php?t=5301

Celia,

You have got to be kidding me -

We were all recently very upset to learn the one of the girls who had been going to Montreal and wearing the Spinecor now is facing fusion -

did anyone attack the spinecor??

[amandap]

I have nothing more to say ~ Maria you said it all!

Thank you.

Amanda

[Celia]

Maria,

I honestly don't know how you can compare a surgical procedure such as vertebral stapling to the Spinecor which is a *very* gentle non-invasive treatment Let's be realistic! I also don't feel comfortable discussing Melissa's situation because we all love her, but everyone knows the reason Melissa's daughter didn't do well with the Spinecor was because her curve was 40 degrees when treatment started!

[mariaf]

AND HUGO, THE CASE YOU REFERRED TO, STARTED WITH A CURVE IN THE 60'S!!!!

I, too, don't feel comfortable discussing Nicole or anyone else here - but I just was pointing out that every time we hear someone needs fusion we should not automatically condemn the method.

I will now use my efforts and energies to try to help educate others. That is really what I am trying to do - let others enjoy the same freedom from bracing that my son has now enjoyed for three and a half years.

Case Closed

[amandap]

I'm all for the free exchange of information! One doesn't have to look to far for stapling failures...

All methods of bracing will have some failures there is no reason to dwell on those failures because there are so many more successes.

Stapling is not 100% guaranteed.
Spinecore is not 100% guaranteed.
Conventional bracing is not 100% guaranteed.
For that matter fusion is not 100% guaranteed some people go on to need revision surgery 10-20 yrs down the line does that mean all fusions need to be stopped?

How many people have died and continue to die during open heart surgery? But the success outweight the failures so the doctors learn and move forward.

Please Celia quit referring to articles that are 3 yrs old and try to focus on the positives and the successes. I know you focus on the positive where spinecore is concerned but in all honesty how many failures have there been?

Amanda

[amandap]

I know what we've experienced and Lorena is now 1 yr brace free and we could not be happier.

okay, now I'm done. This bickering back and forth is enough to turn anyone away.

Time to move foward.

Amanda

[Celia]

Hugo was stable at 25 degrees for a number of years after serial casting. I believe that stapling further reduced the curve to 15 degrees and then during the adolescent growth spurt it shot up to 65 degrees. Anyway....this is a silly discussion and I know you're all very passionate about your cause but like I said, I'm all for the free exchange of information.