Vertebral Stapling ~ 1 Yr Post Op

[mariaf]

Hi Laura,

Rest assured the hostility is not to my liking either - nor I'm sure to Amanda's.

HOWEVER, we will not stop trying to help and give information to parents (information that we offer from our personal experiences and which is always greatly appreciated by the recipients of such information). I wish someone had done this for me. (By the way I would want that info to come from someone with PERSONAL experience).

I will also reiterate what Amanda stated earlier that when Celia or anyone posts about something they know about from PERSONAL experience (Spinecor, etc.), while I may not agree with everything everyone says all the time, I stay out of it because I have no PERSONAL experience with it.

Yet if Amanda or I try to give information on stapling, Celia immediately jumps in calling it "experimental" or referring to it as "unnecessary surgery", etc.

I just want parents to know of ALL the options available to them - because that is exactly what stapling is - just another option out there that may or may not be the best for a particular child. But I believe the decision should be the parent's to make. Wouldn't you want this info (from those who have been through it) if it were your child?

I hope you can appreciate and understand this.

[RugbyLaura]

I don't believe that we can only learn from those who have had personal experience. Personal testament is a valuable part of research but not it's entirety. Anyway, enough said.

As parents we all search for the best way forward in treating our children. The one thing I have learned since Imogen's diagnosis is that there is no one answer nor an obvious best way forward. I would be interested in finding out more about vertebral stapling but have searched the web and found very little. Incidentally, on the Spine Universe website Mr Betz's article does lead one to believe that vs is an alternative to fusion. There is not much on this forum either and when people have enquired they have had the information emailed - very cloak & dagger

This is all fairly academic to me as I don't think it's available in the UK; that said, if it looked like a miracle cure I would do everything in my power to get it for my daughter.

The problems I have with the proceedure are:
1) Not enough data, particularly long-term
2) We are trying to avoid surgery by bracing
3) Don't like the idea of foreign bodies in her body
4) By the time you know that bracing has failed it's too late for vs aswell

Not intending to be negative, but you'll probably think I am. I would welcome any further info.

Regards, Laura

[Celia]

Laura,

How could anyone make informed educated decisions when the two articles in question are flawed!!!! In the 2003 study the criteria for failure is 6 degrees and over, two years later in the 2005 study the criteria is 10 degrees or more?????! I have to question whether the change in criteria is not masking progression and making the stats look good??! Anyhoooooo....fun and games as usual! Thanks for the support, I was feeling a little down

[mariaf]

There is not much on this forum either and when people have enquired they have had the information emailed - very cloak & dagger

Perhaps some folks would rather correspond outside of the forum so as not to be attacked. I, personally, am thick-skinned enough to deal with any of this - but others may not be.

In any event, I'd be happy to give information on the stapling here - but isn't that what brought all this on in the first place? someone not liking the fact that I did so?

To that end, I will post what is on the CD I receive from Shriners on the stapling once it is received and I can transfer it into a post. Hopefully, then everyone can read it and decide, as intelligent adults, FOR THEMSELVES, based on the facts, if it's right for THEIR child.

You are correct, Laura, that we as parents must search for the best treatment for our kids. Again, it comes back to the fact that I believe most folks are intelligent enough to do this after weighing information on ALL alternatives. I know I would not want an alternative withheld from me because somebody else decided it might not be right for my child. That's why I feel so strongly about this because I WISH someone had told me about the stapling sooner. It may not be your choice, or someone else's, but it was mine. To each his own.

I wish your daughter nothing but the best,

P.S. Celia, would you care to post the Spinecor statistics? Perhaps, after I review them, I will let you know whether or not I think they are flawed. Thanks!

[desheah]

maria, amanda, celia and laura,

i don't want to get into this debate since i always want to keep my options open for my child and not burn any bridges. especially since lucas has been through tlso, serial casting and now the spinecor for a year. but will that be enough? i have no idea. he's only 5 1/2! that being said . . .

could you add me to you list of parents interested in vertebral stapling? i think you have my e-mail address on hand. if not, i'll send a pm to you. i'm always nervous about posting it on a public forum!

thanks,
deshea

[mariaf]

Deshea,

I just sent you an e-mail with the support list attached.

Welcome to our group!

take care,

[Celia]

Celia, would you care to post the Spinecor statistics? Perhaps, after I review them, I will let you know whether or not I think they are flawed. Thanks!

Again, I don't see what Spinecor has to do with the current discussion on Vertebral Stapling but.....most certainly! As it's been *exhaustively* critiqued by many on this forum!

[mariaf]

Again, I don't see what Spinecor has to do with the current discussion on Vertebral Stapling but.....most certainly! As it's been *exhaustively* critiqued by many on this forum!

It has nothing at all to do with stapling - but I just thought since we were discussing the newer, "experimental" options, why not take a good look at the Spinecor statistics? Is there any LONG TERM data?

At least our discussion has brought some attention to these newer options, as evidenced by the request a few posts back for the support list I put together - and I mean that sincerely, not sarcastically - no matter how heated the discussions are, at least folks are learning about ALL the options available to them, which was always my intention from the start - to pass along info and have folks decide for themselves.

[amandap]

How could anyone make informed educated decisions when the two articles in question are flawed!!!! In the 2003 study the criteria for failure is 6 degrees and over, two years later in the 2005 study the criteria is 10 degrees or more?????!

An educated decision cannot be made based on two very old articles however I think many parents read the above articles and then come to forums like this asking questions, looking for someone who's got some experiences with the actual procedure. The next step if one is truly intrested would be to schedule an actual consult. I know when I first read the articles I was anxious to find someone who'd had the procedure who could tell me more from a parent/patient point of view.

So I'm positive that none one of us made our decisions based on articles or on the experiences of some one else. Our decisions were made based on actual dr visits and many many countless sleepless nights worrying about what would be best for our children.

I know that my daughter and David IMHO are what I consider successful thus far whether it will last through puberty we don't know but we'll cross that bridge when we get to it. I also know that just because our experiences were good experiences not all children are as fortunate as ours but we know the risks involved prior to getting anything done.

The only thing that is guaranteed when one is dealing with scoliosis is that there are no guarantees.

[amandap]

Hi Laura,

There is not much on this forum either and when people have enquired they have had the information emailed - very cloak & dagger

I'm sure you understand after what has transpired here over the last few days why there's is little to no info on the boards.

It's easier to just PM and corresopond via email to avoid the headache.

Amanda

[mariaf]

Well said, Amanda.

Not everyone enjoys arguing endlessly.

I'd rather spend my time and energy helping and supporting each other. As I stated earlier, that information and support is greatly appreciated and we'll continue to provide it!

[Zoe's Mom]

I am very thankful that vertebral stapling was an option for my daughter, Zoe. I also appreciate all the information and support that Maria provided prior to us making this decision. Zoe and I were discussing this situation and I thought her input might be insightful from a child who has undergone the surgery and was involved in the decision of what was her best option. So the following are her words:

Hi everyone!

My name is Zoe. I am 12 and had vertebral body stapling when I was 11 in Feb 2007. Dr. Oswald was my surgeon. I had the option of a hard brace, spinecor or I could have the vertebral stapling surgery. I did not want to have to go through surgery but I told myself "Zoe, you are in the sixth grade. People are mean." So, I decided that my best option was the surgery. My curvature went from 39 to presently 24!

I love to dance and having a hard brace would have not allowed me to dance. I am very happy with the outcome and know that I am so fortunate to have had this option!

[mariaf]

Dear Zoe (and Mom),

I can't add a single thing to that post - it's BEAUTIFUL. I'm sure David's sentiments would be similar if he were old enough to express them so eloquently.

God bless you - and best of luck in the future.

I can't tell you how many folks have e-mailed me or sent me private messages over the last day or so asking that I continue to lend my support and spread information. It has meant the world to me. Not to worry, I'll continue doing what I've been doing and trying to help and support as many families as I can who seek that support.

[Celia]

I know of one parent (Maria knows who I'm referring to) who actually quit coming on these boards because of you. And I really wish she'd stayed on because she would be a tremendous asset to these boards.

I honestly don't know who you're referring to ????? Could you please enlighten me and everyone else?


The fact that you and Maria would prefer to privately e-mail prospective parents information on vertebral stapling does appear to be very "cloak and dagger". I don't understand why you feel vertebral stapling shouldn't be put under the harsh glare of scrutiny as much as other options such as the Spinecor have been Somehow both you and Maria consider my views on vertebral stapling as a personal attack when in fact nothing could be further from the truth! Only time will tell if this surgical procedure is the right thing. If it isn't.... what then ???? Will you both rest easy at night knowing all the people you sought and managed to convince?!

[mariaf]

Will you both rest easy at night knowing all the people you sought and managed to convince?!

Once again, you make up your own "facts" - typically, not every single time, but TYPICALLY someone hears of stapling ON THEIR OWN and then says "has anyone heard of this?" or "has anyone's child had this done?"

Some of these folks email me so you'd know NOTHING about what their e-mails say so please force yourself not to comment on something, again, that you have NO knowledge of.

Yes, from time to time I do inform people that there is another option out there, once again, for the tenth time, Celia, BECAUSE I WISH SOMEONE HAD TOLD ME SOONER AND THEN I COULD HAVE MADE MY OWN DECISION AS AN INTELLIGENT AND CONCERNED PARENT.

Do you really give parents so little credit to think that they'd make such a serious decision about their child based on what Amanda or I say??????

If we had such powers of persuasion we'd be bringing about world peace.