spinecor

[Pooka1]

The bottom line is that Betz believes the scoli is being driven by the underlying condition, and not only is S not a candidate for VBS and/or VEPTR, no amount of bracing will affect the curve.

Hey Mary Ellen,

Can I ask you about this comment from Betz?

Is Betz saying that *if* the scoliosis is due to either Marfan's or marfan-oid cause then braces are KNOWN to be ineffective?

If so, I'm getting a diagnosis on Willow and if the cause of her scoliosis is thought to be non-AIS then she can lose the brace immediately I take it. Unlike Savannah, Willow doesn't appear to be progressing over the last several months, before or after the brace, but I can't eyeball it with so little rotation.

sharon

[ReneeM]

Dr. Cahill

Mary Ellen,

My 10 year old son had VBS performed by Dr. Cahill in February of this year. He is AMAZING and was so patient with all of us. We have to travel to Philadelphia and Dr. Cahill has been very accomodating in dealing with us "out of towners." Please send me private message if you'd like to talk about our experience in more detail.

Renee

[WNCmom]

Sharon:

Is Betz saying that *if* the scoliosis is due to either Marfan's or marfan-oid cause then braces are KNOWN to be ineffective?

That was my understanding. Of course, that is his opinion. I have not read or heard elsewhere that that is true, but then I haven't researched it. Betz does have a 50+ page resume with a long list of research papers he has produced....he is well-known and respected in the field. Others on this forum are more knowledgeable than I about his qualifications (and about Marfan's as well, I'm sure), but he is certainly highly qualified.

Renee:

Thanks for the offer! I sent you a PM.

Mary Ellen

[Pooka1]

Mary Ellen,

Thanks for this.

I am going to contact our surgeon tomorrow about this and also our orthopod who recommended our surgeon.

If necessary, I will get another opinion from someone experienced in this area.

If Willow doesn't have to wear a brace then I'm going to find that out ASAP. Just knowing this is a possibility, I already feel bad for every night she has worn it already.

sharon

[WNCmom]

Sharon:

I'll be interested to know what you find out.

Mary Ellen

[Pooka1]

I have been googling. Betz has considerable agreement for his statement.

Check out the last line of this abstract...

http://cat.inist.fr/?aModele=afficheN&cpsidt=1515743

"Physicians should understand that most patients with Marfan syndrome who have a curve of more than 25° and a Risser sign of 2 or less will reach the surgical range, even with brace treatment."

Willow is in that category (ETA: Assuming she is diagnosed with Marfan's). Savannah was in that category (ETA: again assuming she has Marfan's) and has been fused.

Well, I guess if this pans out, the silver lining will be Willow can lose the brace immediately.

Thanks so much for mentioning that comment from Betz.

sharon

ETA: As I understand it, if my girls only have the skeletal issues and no aorta/heart/eye involvement then they do NOT have Marfan's Syndrome. It must be certain skeletal issues plus another system like heart or eyes. They have no issues with their eyes or heart or stamina to date so I'm guessing the diagnosis will not be Marfan's but we will see. Anyway, I wonder if bracing is still considered ineffective for kids without the syndrome but just the bone issues. Somehow, I doubt there is any study that has examined that question.

[WNCmom]

So here's a question for people who know more about VBS: if a child with Marfan's or marfan-like characteristics is stapled within the eligibility limits for VBS, would staples be expected to hold better than an external brace?

I know I have kind of hijacked this thread, but from another perspective it's worth knowing whether SpineCor will work or not in a case like this, and if not, what else might.

Carmell? Maria? Anyone?

Mary Ellen

[RugbyLaura]

Mary Ellen - Sorry to hear your news. I know very little about VBS and even less about Marfan's so am not best placed to answer your question. I'm sure others with more knowledge will be along soon to help.

My feeling would be that the issue is rapid growth. Do you find that Sidney's brace needs to be adjusted greatly at each appointment? Perhaps your orthotist (or US equivalent) may have a view on this.

My own instinct (regarding the rigid v Spinecor brace) is that 1) Spinecor is much more comfortable and convenient (quality of life) and 2) it allows the spine to remain more flexible leading to a better surgical correction.

Good luck with your search for answers.

Laura

[jillw]

Mary Ellen, don't apologize! You're not hijacking the thread - all these issues are inter-related and please keep posting here because we want to know how Sidney is doing (or if you don't I"ll be on the lookout for you on other threads) AND we all learn from these posts.

[mariaf]

So here's a question for people who know more about VBS: if a child with Marfan's or marfan-like characteristics is stapled within the eligibility limits for VBS, would staples be expected to hold better than an external brace?

I know I have kind of hijacked this thread, but from another perspective it's worth knowing whether SpineCor will work or not in a case like this, and if not, what else might.

Carmell? Maria? Anyone?

Mary Ellen

Oh boy, I missed a day or so on the forum and it seems a lot has transpired!

Mary Ellen - I am so sorry to hear that you did not get the news you were hoping for about your son. That sort of thing is often harder on the parent than the child. My heart goes out to you as a parent.

This is such a difficult question above (and I, of course, am not a medical professional), but from what I read you said that Dr. Betz felt that neither VBS nor VEPTR would help your son avoid fusion, correct? and that this was due to the fact he felt an underlying condition was driving the curve?

I know that he (Betz) will not recommend VBS if he feels there is not a very good chance for success because he would not want any child to have to undergo TWO surgeries - VBS and then ultimately, fusion.

As an aside, I have known Dr. Betz for four and a half years and seen him in action. In fact, I have sent a lot of parents to him, some whose kids had difficult and complex cases. There has not been one time the parents were not pleased and impressed. In fact, a few times the parents went to him for a second opinion and were SO impressed, they switched their childs' care over to Betz and Shriners.

All that being said, all of these questions (about bracing and/or VBS/VEPTR being effective in kids with Marfanlike skeletal characteristics, etc.) are for the medical professionals as they are very complicated. If you prefer e-mail communications, Janet Cerrone can be reached at:

janetcerrone@comcast.net

I also have an e-mail address for Dr. Betz. If you'd like it, please PM me or email me.

I also wanted to add my gut feeling (and hope) that neither your son nor Sharon's girls have Marfans but rather just some "marfan-like" skeletal characteristics. I don't know all that much about Marfans but I have heard or read of several kids having only some characteristics but NOT actually having Marfans.

Best of luck,

[RugbyLaura]

Hi all - have just waved Immy off to a residential activity course with school.

She will be gone until Friday evening and will be doing all sorts of activities while she's away - abseiling, canoeing, climbing, caving, etc, etc. She is very private about her brace so I don't think her teachers take it very seriously - hope she's OK! To be honest, the brace will probably be the easy part - I should be more worried about what state her hair will be in when she gets back! Dreadlocks I imagine!

Has anyone else's child been on this kind of trip in a Spinecor brace?

Laura

[WNCmom]

Of course you are right, Maria. These questions are best for Janet (who as you said, was wonderful, by the way--and so was Dr Betz), and when I have a few minutes to gather my thoughts and think I can be articulate enough, I will send her an email. I think she can answer any of them, or get the answers.

Maybe Sidney's curve would have progressed regardless of anything we did. But being a "no stone unturned" kind of person, I wish I'd asked more questions back when Sidney's curve was at 30--18 months ago. That was before I found this forum. I know you will all say not to beat myself, but it's a challenge not to play the "if only" and "what if" game. The truth is, it's been nearly 9 months since we knew fusion was becoming more and more likely. And what we have is what we have.

All water under the bridge. I'm now doing my best to let go and be grateful that fusion is even an option. We are very fortunate to be living in this day and age.

Mary Ellen

[mariaf]

[QUOTE=WNCmom]Maybe Sidney's curve would have progressed regardless of anything we did. But being a "no stone unturned" kind of person, I wish I'd asked more questions back when Sidney's curve was at 30--18 months ago. That was before I found this forum. I know you will all say not to beat myself, but it's a challenge not to play the "if only" and "what if" game./QUOTE]

Ahh, Mary Ellen - we ALL tend to beat ourselves up simply because we are the parents and we feel we "should" be able to FIX everything for our children.

My friend, Carmell, says that "guilt is a useless emotion".

I can't tell you how many times I have said that to myself over and over - I know in my head that it is true, but our hearts are a different story.

It only means that you are a great mom and love your son dearly.

But, please don't beat yourself up too much. The truth is, most of this is out of our hands. Your son is lucky to have a mom like you who IS trying to leave no stone unturned and to be at his side every step of the way.

Hugs,

[HaleyMom]

Hi all - have just waved Immy off to a residential activity course with school.
Has anyone else's child been on this kind of trip in a Spinecor brace?

Laura

Hi Laura
Haley spent a week at girl scout camp last summer -cabins with no air conditioning. She wore her brace over a one piece bathing suit all week. The brace was filthy but she survived and had a really great time.

I'm sure Immy will have a great time as well.
Lisa

[jillw]

Elain/qiling,
Hi. Back in the fall I remember you posting that when you went to Montreal that blood tests were taken by Dr. Moreau as part of his research and that he would send you the results. Just curious, did you learn anything interesting? How is his research coming? And how is your daughter Jennifer doing?

Thanks, Jill