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Lexi's_Mom
03-16-2009, 02:49 PM
I just discovered that my 8 year old daughter has scoliosis. I am still in shock and so scared for her. She was diagnosed at her annual physical and then x-rays showed that she has a 45 degree and 24 degree curve....and 64degree lordosis.

Obviously I am completely devastated....how did I not notice this huge curve on my daughter?

She had an MRI done and we will see her pediatric orthopedic Dr. at umass again this Thursday for the results.

My question is....have any of you had a similar situation? What do they normally do for someone her age if it is idiopathic? Just brace for now or would they want to do surgery on someone so young? I just want to hear others stories to get some sort of idea of maybe what to expect....although don't get me wrong....I am well aware that all cases are completely different.....I am just curious.

Thanks in advance.

mamandcrm
03-16-2009, 05:26 PM
Hi Lexi's Mom,

I'm so sorry to hear about your daughter's diagnosis, it's very hard to swallow especially so out of the blue. My daughter was diagnosed this past summer just a couple months before her 7th birthday. Her initial x-ray was 25. She is now up to 35. You surgeon will counsel you on what is the best treatment plan for Lexi from his/her perspective. From what I recall of my "surgery" conversation with our ortho, she is far too young for fusion, and our surgeon (I think) said she would not advise growing rods until she was at probably 50 or 55. I know it's scarier for you because your daughter is close. They will probably put her immediately into a full-time brace, although I don't know anything about lordosis so maybe that affects things differently.

It's good you got the MRI. Hopefully it will put your mind at rest about any underlying conditions.

On a different note, in case your surgeon does not bring it up with you, you may want to consult with Shriners Hospital in Philadelphia or with a surgeon near you who does Vertebral Body Stapling ("VBS"). I'm pretty sure people more knowledgeable about it will chime in here to give you additional info. We are considering it for our daughter. Your daughter I think may be outside the range for the standard surgery, but they are now doing a modified surgery that adds a rod for kids with more advanced curves. There is a forum you can go to for a lot of information ("vertebralstapling.com", I think).

It's overwhelming I know but you will start to sort through it and understand it and know your options. It doesn't make it less scary but it does make it more manageable.

Best wishes,

mamandcrm
03-16-2009, 05:35 PM
please don't beat yourself up about not seeing her curve. You are not alone. It's just not something you go looking for...I certainly didn't see Gillian's and her first pediatrician had even told me when she was 3 that she thought there might be something and to have her rechecked. Well, I did, she was cleared by her new pedi (we moved), and I forgot about it until...we changed pediatricians again and they saw it immediately.

Also if you don't get responses here, post in the Bracing section.

christine2
03-16-2009, 06:55 PM
Lexis Mom

Welcome, you will find a tremendous amount of info and support here. I remember my feelings when my daughter was 1st diognosed. They were much like yours.

Lexi's_Mom
03-16-2009, 07:14 PM
Thanks guys for your support.

I just got an email from the pedi ortho and he said that her MRI was completely normal!! So yay for that! He just says that we will of course need to brace at this point so we will discuss that at her appt on Thurs.

I have been doing a ton of research since her diagnosis less than 2 weeks ago and I think that Spinecor would be great for her. Is there any one out there who hasn't had a good experience with Spinecor?

There is a prosthetics office that will fit her in Hartford CT.....which is only about 90 mins from me. And her Dr. at UMASS admits that he doesn't have much first hand experience with this brace and says that it is still pretty experimental. Thoughts??

mamandcrm
03-16-2009, 07:23 PM
You may want to post in Bracing--there are lengthy Spinecor threads there but you can start your own thread and may get more feedback

Best,

Haleysmom
03-18-2009, 03:37 PM
I would not say "experimental" as such, others on this formum may disagree. It is used in other countries by Orthopedists, just not the US. We are very happy with our "CHOICE" to use Spinecor

Make sure the person fitting is certified by Spinecor - that is critical. Agree that you should weed thru the Spinecor thread.

BellasMom
03-18-2009, 04:12 PM
Couple of things - first, why are you going to UMass, when there is Children's hospital available? (you are in Boston, right?)



There is a prosthetics office that will fit her in Hartford CT.....which is only about 90 mins from me. And her Dr. at UMASS admits that he doesn't have much first hand experience with this brace and says that it is still pretty experimental. Thoughts??

I would go to Montreal and I do go to Montreal (we are in Boston too), since fitting this brace (Spinecor) is crucial to it's success. When you go to Montreal, you get fitted by the people who invented the brace.

When I discussed this with our ortho at Children's, he said Montreal and only Montreal

Lexi's_Mom
03-18-2009, 07:01 PM
Couple of things - first, why are you going to UMass, when there is Children's hospital available? (you are in Boston, right?)



I would go to Montreal and I do go to Montreal (we are in Boston too), since fitting this brace (Spinecor) is crucial to it's success. When you go to Montreal, you get fitted by the people who invented the brace.

When I discussed this with our ortho at Children's, he said Montreal and only Montreal


I live in MA...not Boston. Umass is where I was referred. If and when a second opinion might be needed I will consider Children's Hospital. But for now we are taking one step at a time.

And I am aware that the people in Montreal invented the brace....but they are also the ones who trained the Dr. at Children's Hospital in Hartford. So I am going to have her fitted in Hartford and if I do not receive a decent initial correction I will go to Montreal to ensure that it is fitted properly.

Thanks for everyones help!

rtremb
03-19-2009, 02:29 AM
Hi Lexi's Mom:

Our daughter wore the Spinecor brace but her curves were too advanced so it didn't work for her. I think it would be a really good idea if you talked to Dr. Rivard (the inventor of the brace) in Montreal to ask him if he thinks this brace will work for your daughter. He can be reached at
Phone: (514) 345-4839
e-mail: chrivard@gmail.com
He usually responds very quickly to emails and phone calls.
I am concerned that your daughter's thoracic curve may be too advanced for this brace to be effective - Dr. Rivard will know best though.

The vertebral stapling is another option to look at very seriously before your daughter's curves get any larger. There is a limited window of opportunity for this option. (we missed it because our doctor didn't take our questions about it seriously.) http://www.vertebralstapling.com/

Ruth

Pooka1
03-19-2009, 07:33 AM
The vertebral stapling is another option to look at very seriously before your daughter's curves get any larger. There is a limited window of opportunity for this option. (we missed it because our doctor didn't take our questions about it seriously.) http://www.vertebralstapling.com/

When did you ask the surgeon about this? When is the last year your daughter was in VBS range? Wouldn't it be at the very beginning of the VBS research (which is only about 7-8 years old now)? Would you have considered totally experimental surgery then or ever?

You likely asked before they had any data on VBS efficacy whatsoever but only anecdote. If that is the case, it would be impossible to address your questions on it.

Nobody knew which way VBS would go up until very recently and there is still much prove-out remaining. If it was a failure, you would be rejoicing that the surgeon didn't address your questions and that you didn't go down that road.

It's good to remind ourselves sometimes that not all surgeons are idiots. Fair is fair.

mariaf
03-19-2009, 03:32 PM
The vertebral stapling is another option to look at very seriously before your daughter's curves get any larger. There is a limited window of opportunity for this option. (we missed it because our doctor didn't take our questions about it seriously.) http://www.vertebralstapling.com/

Ruth

I can understand your feelings, Ruth. I'm sure you are thinking that at least you would have wanted to be given the choice to consider the option of VBS. Our former ortho also "poo poo'd" the idea of VBS back in 2003 (it was really new then). But my son was five years old and stuck in a TLSO brace 22 hours a day (and facing many more years of the same) so under those circumstances, I felt I HAD to look into it on my own, without her blessing.

Lexis Mom - Your daughter MAY still be within the window for VBS but she's right on the borderline. Normally, they staple curves up to about 35 degrees. However, just a few weeks ago I heard from a mom whose son had VBS and his curve was also around 45. The reason what that he was VERY flexible. Since your daughter is only 8, who knows, she might be flexible as well. Again, this boy was an exception but it's certainly worth looking into.

Unfortunately, in some cases a curve of 45 degrees is too large for VBS alone. There are other surgical NON-fusion options for larger curves (VBS plus hybrid rod, VEPTR, etc.) I'm just mentioning ALL options here.

I believe that Spinecor (much like VBS and other treatment methods) has also been most successful on smaller curves. But, again, maybe your daughter will be an exception. I would definitely talk to a doctor qualified to assess her suitability for it as well.

In other words, even though you will need to do so quickly, look into all your options.

Best of luck and keep us posted.

rtremb
03-20-2009, 04:40 AM
Sharon:

The VBS was not experimental when I brought an article on it to the doctor at the Children's Hospital here in Ottawa less than 3 years ago. He told me that this was only done on children's legs not their backs. I believed him. I did not know any better at the time and trusted him. I very much regret not pursuing this on my own for my daughter. This is a great sadness to me and I would not want to think anyone else would miss this potential opportunity for a treatment that might prevent the need for spinal fusion.

I was not on the forum back then so didn't have the advantage of getting information from here.

Ruth

Pooka1
03-20-2009, 07:38 AM
Sharon:

The VBS was not experimental when I brought an article on it to the doctor at the Children's Hospital here in Ottawa less than 3 years ago.

Ruth, I think there is some problem with definitions here... VBS is STILL experimental surgery as we type. Three years ago, it was a great unknown. I understand why folks with JIS kids would try it though in lieu of bracing.


He told me that this was only done on children's legs not their backs. I believed him. I did not know any better at the time and trusted him.

I'm missing something... how can he sit there and tell you it was only done on legs when you just handed him an article on stapling children's spines? What am I missing?


I very much regret not pursuing this on my own for my daughter. This is a great sadness to me and I would not want to think anyone else would miss this potential opportunity for a treatment that might prevent the need for spinal fusion.

Ruth, you shouldn't beat yourself up over this. Three years ago, was your daughter out of VBS range? If she was and was stapled, there was a high chance of failure. They didn't know that three years ago. You may have dodged that bullet.

Also, I admire your ability to consider experimental surgery on an older child. If I had a JIS kid, I would be more inclined. But with a teenager, I was disinclined and opted for proven surgery that has cured my daughter per her surgeon.


I was not on the forum back then so didn't have the advantage of getting information from here.

Yes but you found the VBS article on your own! You are ahead of many people.

I apologize if my tone was harsh. I just think that most surgeons do their best most of the time. It seemed like you were being unfair. I don't know what a surgeon could have honestly told you three years ago. At best he could have told you it was extremely experimental with a handful of cases of successes and a handful of cases of failures in hand at that time. Does that really sound like something you would have chosen? They can't make up data and they aren't clairvoyant. They tend to leave the magical thinking to others.

mariaf
03-20-2009, 09:18 AM
This is a great sadness to me and I would not want to think anyone else would miss this potential opportunity for a treatment that might prevent the need for spinal fusion.


That is the EXACT reason that I make every attempt to raise awareness regarding VBS. While it is not the best alternative for every child, I think parents are intelligent enough to review all the information out there, talk to a qualified doctor, and make a decision about whether or not VBS it is a good option for their child. But PLEASE don't beat yourself up. There have been times I have listened to, and trusted, doctors when I should have questioned them more. I regret that. But we can't go back - we must live and learn.

Sharon - I guess three years ago there were a lot fewer doctors on board with VBS than there are today. Just in the past several months, the number of doctors that I am aware of (we keep a list on the VBS site of those we know of) has probably tripled. I would say a significant increase has happened over the last year in general though. I like the fact that this list includes some very prominent doctors.

As for whether or not one would have chosen VBS three years ago (or five years ago as I did), a lot would depend on the individual situation. I agree with you that I would be much quicker to opt for VBS for a younger child than an older one, for many reasons.

Pooka1
03-20-2009, 12:32 PM
There have been times I have listened to, and trusted, doctors when I should have questioned them more. I regret that. But we can't go back - we must live and learn.

But you can't get blood from a stone. What could a surgeon have credibly said to Ruth three years ago? Wouldn't it be that this is extremely experimental surgery, there are few cases, some failures, looks promising, etc.? Ruth understandably is trying to avoid surgery for her daughter per se. People who are trying to avoid PROVEN surgery are not likely to go for highly experimental surgery, yes?


Sharon - I guess three years ago there were a lot fewer doctors on board with VBS than there are today. Just in the past several months, the number of doctors that I am aware of (we keep a list on the VBS site of those we know of) has probably tripled. I would say a significant increase has happened over the last year in general though. I like the fact that this list includes some very prominent doctors.

Yes that's what is know NOW. The decision would have been much more dicey, especially for AIS, three years ago. If her daughter was out of VBS range then, nobody knew it and VBS would likely have failed had she pursued it.

Frankly, given the state of fusion surgery for AIS even three years ago, I don't know why they were stapling AIS kids who were fusion candidates. JIS is a completely different scenario. Fusion is putting AIS kids back in the general population on future back issues now and three years ago. VBS looks like it might do that also but that certainly wasn't known three years ago.


As for whether or not one would have chosen VBS three years ago (or five years ago as I did), a lot would depend on the individual situation. I agree with you that I would be much quicker to opt for VBS for a younger child than an older one, for many reasons.

Agreed.

mariaf
03-20-2009, 12:39 PM
But you can't get blood from a stone. What could a surgeon have credibly said to Ruth three years ago? Wouldn't it be that this is extremely experimental surgery, there are few cases, some failures, looks promising, etc.? Ruth understandably is trying to avoid surgery for her daughter per se. People who are trying to avoid PROVEN surgery are not likely to go for highly experimental surgery, yes?

Yes. I was simply trying to say to Ruth that she should not beat herself up as we all make mistakes.

Pooka1
03-20-2009, 12:45 PM
Yes. I was simply trying to say to Ruth that she should not beat herself up as we all make mistakes.

I don't think Ruth made any mistake and I have no reason to think the surgeon did either.

I suspect had she had the entire straight dope on VBS as it existed three years ago, she probably wouldn't have have chosen it. I don't know that, obviously. Further, if her daughter was out of VBS range, it's a damn good thing she didn't choose it.

mariaf
03-20-2009, 12:49 PM
Frankly, given the state of fusion surgery for AIS even three years ago, I don't know why they were stapling AIS kids who were fusion candidates.

I understand why that point might be raised in certain cases. But I also think the doctors considered many things.

VBS is a less invasive surgery.

It requires a shorter hospital stay and has a quicker recovery time GENERALLY.

Again, in GENERAL, the patients need less pain medication. They retain ALL of the flexibility in the spine.

These are just some reasons I have heard that folks might choose one surgery over the other, provided the doctors felt there was a reasonably good chance of success.

So, on the one hand I agree with you that some kids maybe should have gone straight to fusion. But on the other hand, I'm sure there are some AIS cases where they had VBS and never needed fusion. You may say they had one surgery anyway. But some parents (myself included) might opt for a surgery they viewed as an "easier" one, for lack of a better word.

Certainly a lot of valid points on both sides.

mariaf
03-20-2009, 12:50 PM
I don't think Ruth made any mistake and I have no reason to think the surgeon did either.

I suspect had she had the entire straight dope on VBS as it existed three years ago, she probably wouldn't have have chosen it. I don't know that, obviously. Further, if her daughter was out of VBS range, it's a damn good thing she didn't choose it.

I did not mean to imply I thought Ruth made a mistake. But if SHE felt she did, I did not want her to beat herself up over it.

Case closed.

sarah105
03-24-2009, 06:06 PM
I don't have too much info since I don't really know much about spinecor, but I was treated and braced at CT Children's Hospital in Hartford (boston brace) for 7 years. Everyone I saw there was very friendly, helpful and respectful. Even when I was very young they always made sure that I knew exactly what was going on and at least made me feel like I had some say in the process. If they have the option that you are looking for, then I would definitely recommend going there. I don't know if that helps, but I figured another perspective might help. Good luck!

Nanette77318
03-25-2009, 08:39 AM
Lexi's mom....I have no, zero, nada experience with anything as we are only watching my son's curve at this point....but....I just wanted to add a smidget of info. I read a LOT of posts on here and I read a LOT about Shriners....so, I just wanted to offer up....that there is a Shriners in Springfield. Not too sure where you are in relation to Western Mass, but if you are only 90 minutes from Hartford....you aren't too far! I lived in East Longmeadow most of my life before coming to Texas so....any way......if it's ever needed, you know Shriners is close. : )

aterry
04-13-2009, 01:32 PM
Lexi's mom,

This is a very interesting thread with a lot of good information. I just want to go back to your first post where you talked about being in shock when you learned about your daughter's curve and wondering how you didn't see it. I empathize with you because I feel exactly the same way--my daughter is older, 16. I'm doing the best I can to sort through all the information and be supportive to my daughter but I don't know how long it will take for the guilt to subside. (guilt that I missed seeing it, I mean) Curves, I guess, are not always that obvious to the untrained eye or even the semi-trained eye. Her pediatrician missed it, for example.

Good luck sorting it all out.