Daughter just diagnosed! Help!

[Chris43]

Thanks for all the help everyone!

AILEA: WOW! I'm getting so much info. here. So do I understand that your daughter had a 38 curve in 2004 and a 25 curve in 2009 after only bracing her for that time? She has not had the surgery and did not do any exercise program or Schroth program? She wore the brace faithfully, and her curve actually got better?This is what I'm hoping for, but I may have misunderstood what you wrote.I was told by the doctors and by many people that her curve would never improve from what it is now.What do you attribute your daughter's success to?I'm just curious about all of the cases I read here.Yours is a case that gives me hope again!I am finding out that all of you who have responded to me are so kind and so helpful. I really appreciate the kind words and the support. I really needed it.

MAMAMAX AND FLERC: You both mentioned the alternative program that I was thinking of trying after I get a second opinion. I actually spoke to Dr. Moramarco in Woburn, MA. I liked what I heard! I was so happy to see someone who actually knew about this Dr. I don't want to go to a quack! I thought I would get one more opinion to see what these x-rays are actually reading. Is it 31 and 33 or 41 and 48? Then I would decide where to go from there. We are bracing right now and we would like to try this Schroth program with Dr. Moramarco. My daughter would like to try it too. As I have said before, she really does not want the surgery! She is being so good about this brace. I've read alot of posts that mention the children not being able to tolerate the brace. I hope I'm not speaking too soon, but she really is being good about it.Everyday-22 hours a day-tightening it beyoond the markings that they told her to. They suggested that she "try" to get beyond the markings before her next appointment, and within the first 2 weeks she has made sure it is as tight as she can pull it!She never complains about that, but she does always say that she does not want that surgery.I hope I haven't scared her too much,by trying to find an alternative solution. I'm really worried about that!

FIREFLYMD: I'm not really sure about what the VBS stapling is.Could you explain? I know you said you tried everything to avoid surgery too, but ended up with that option. You also mentioned a doctor in Boston. That is the area I am in. Children's Hospital is the place we were sent to first. My second opinion at the end of this month will be at Mass. General Hospital. I'm not sure which hospital to go with either. I have many people tell me Children's is the best, then I have others tell me Mass. General.Do you have an opinion on these two? You seem to have traveled very far to find the right doctor for you. You went to different states. Is that what most people do? I just figured Boston has so many good hospitals I would be fine choosing among them. But it seems that I may be wrong. Should I be going elsewhere?

SNOOPY:Thanks for the info. on Spinekids. I asked my daughter to try it and she said "NO WAY". As I said before she's good about the brace, but not so good about the whole scoliosis thing. I think she 's just not ready to face it yet. I'm still struggling myself as you can all tell. I just hope I haven't scared her too much. I've tried to not give her too much info. about the surgery, because I don't want to scare her. Maybe it would be better for her to learn it all. I think she still needs a little more time though. Treading carefully at the moment!

GRYFFINDOR: I love your screen name. We are big Harry Potter fans!I also loved your comment about your husband sticking his head in the sand.I have no support from mine. He hasn't been to any of these appointments with me. Although, I never expected any of the appointments to be as devastating as they turned out to be. So I'll be fair to him. He does want to be at all of the upcoming appointments.His opinion is "If she needs the surgery, she needs it. You need to deal with that!" He doesn't even know what the surgery entails, because every time I try to tell him about how severe the surgery is and how long the recovery is, he won't listen. He doesn't want to know anything. His feeling is "Why worry about something you can't control?"I'm the complete opposite. I want to know everything about it, so I can make an educated decision! It's driving me crazy! Thank God I was told about this forum, so I can at least bounce things off of you all, learn about your stories, and at least have some input from someone else going through the same things as us. My husband wants nothing to do with this either.Anyway, I'm so sorry to hear about your problems with the school. I can't believe they would do that to you even after you had doctor's notes about the situation. Again, I feel that this is a problem, that most people don't understnd the severity of this disease!Does your school have any idea how upsetting this is emotionally for your family?How painful it is for your daughter?How difficult and long the recovery will be for her?Oh My Gosh! They are a school, and should be educated on this.All schools should be made aware of this!POOKA did say that it is a very low percentage of children that actually end up with the surgery, but still I think the education should be out there as it is for other obscure childhood diseases, especially in a school!I hope this all works out for you. I hope the surgery goes well for your daughter too. I'm glad she wants it. I don't know how or when a child reaches that point of acceptance, but I hope if my daughter has to have it, she can find peace with it too. Good Luck!

CONCERNEDDAD: Thanks so much for the charts and sharing your story.So your daughter had no brace, no exercise program, and no progression. That sounds great to me.You also sound very gutzy and lucky!I am glad your daughter made out so well! Your charts have made it clear to me that the odds are stacked against my daughter.But I still have hope!I have a huge issue with the discrepency between the x-rays(31 and 33 or 41 and48).I also question that Risser of 1. As I said she just started her period. The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers. That meant she had a "little" growth left. That was my understanding of it. I had no idea what a Risser of 1 meant. Again thanks for that chart! I'm not a doctor, but I would think she would be at a Risser higher than 1. My family is very petite. Do doctors take that into consideration? My daughter is the same size as me(5feet). All the women in my family are about that size. When I was 14 I was about 5 feet tall and 90 pnds. My daughter is 5 feet tall and 85 pnds. I stayed that way all through high school. Does this matter? The doctors never asked me about any of that. They did ask how tall my husband was. He is 6ft. tall. The doctor said my daughter should be about 5-5. I don't know about that! The pediatrition always estimated my boys to be about 5-8 or 5-9. They are 17(twins) and they are done growing and they are 5-5!I doubt their little sister is going to be bigger than them. She is very petite, as I was.What do you think? Does any of this matter? I do appreciate your input.

Again, thank you to all of you for helping me sift through all of the info.

Chris

[Pooka1]

As you have gathered, it is a HUGELY controversial subject.

Yes and not just among us unwashed masses but also among the experts (the surgeons). That's a sign that evidence is woefully lacking in this field and that claims otherwise are false.

The problem with bracing is that there is no good evidence it works. But that doesn't mean it doesn't work. Some things are just challenging to study and bracing research is plagued by confounders like compliance and inadvertently including connective tissue disorder cases which might be "ringers" bringing the observed efficacy down. Because it is such a hard treatment, all you can do is go with what little is known. The best guesstimate of bracing efficacy I am aware of is the following:

70% are unnecessarily treated (i.e., would not have progressed anyway)
20% bracing failure
10% possibly stabilized (progression halted)

I think this question of odds is very interesting and there will be a wide range of response if you asked at what percentage would you try a particular treatment.

For me, at ~10% wherein you are left with a ~30* curve say that still might become surgical even a few years out (one surgeon recently labeled this situation not unusual if you can believe it), I would do it only if my kid wanted to try. Were I to decide this for my kid, I think it would have to be upwards of a 95% chance to avoid fusion for life to wear a 23-hour per day brace. For night-time braces, 10% might be reasonable.

But I am coming to understand that it is not possible to claim bracing can avoid fusion over a lifetime. I think it is possible that bracing only delays rather than avoids surgery in many if not most of those ~10% of cases where bracing might have worked to hold a curve. But even if all those 10% went on to have fusion, bracing would still appear to be a big win because of the 70% who were braced but really didn't need to be. And progression is one thing... ancillary damage from simply having even a moderate curve over the years is another that I am not so sure pediatric orthopedic surgeons mention much. I think they know it though.

I know during my daughter's brace treatment I was focused on one number... 50*. It was my understanding that If she made it to maturity under 50* then she would never need fusion. I have come to learn how wrong that understanding was for so many reasons.

It's eye opening to read the testimonials from adults who were braced as kids, were told they were out of the woods, and STILL required fusion, sometimes as early as a young adult. There are several on this group though this group is not an accurate cross-section through the population with scoliosis. They may be part of that ~10% who were actually helped by bracing during adolescence or they were part of the ~70% who really didn't need bracing but were braced anyway. Who knows.

Many more questions and hypotheses than answers at this point.

[concerned dad]

Chris you say:

"Your charts have made it clear to me that the odds are stacked against my daughter.”

And

"The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers.”

I am not sure I read the charts the same way as you do (or even the correct way). Please consider taking those charts (or if you want I can email you the whole paper) to your doctor and ask him in what “stage” your daughter falls. From the sounds of things, he maybe very familiar with that research and may be able to explain its’ strengths and weaknesses. It might even put your mind at ease a bit if you find that her skeletal age is advanced (sure sounds like it if only her distal radial physis is open). Combine that (more advanced skeletal maturity) with a possible error in her xray (maybe the true number is closer to the first reading) and you could be in a different boat.

Pooka, you say:

"I think this question of odds is very interesting and there will be a wide range of response if you asked at what percentage would you try a particular treatment."

This is what Lori Dolan did in her Equipoise Paper (ask a bunch of surgeons what they would do in 12 hypothetical scoliosis situations).

With one exception, there was no consensus of agreement. That established a state of “clinical equipoise” which ethically allows a physician to participate in a random controlled trial (RCT) evaluating bracing (knowing that some of his patients would NOT be braced) even IF he personally believes in the efficacy of bracing.

“Clinical equipoise has been defined as the state of honest, professional disagreement in the community of expert practitioners as to the preferred treatment”

Oh, the one exception? …. bracing post menarchal girls. Most (not all) of the expert respondents whose opinions were elicited in the study felt that bracing post menarchal girls would not affect outcome. (Something else perhaps for Chris to consider.)

[Pooka1]

This is what Lori Dolan did in her Equipoise Paper (ask a bunch of surgeons what they would do in 12 hypothetical scoliosis situations).

Yes and that was a great nutshell of that paper.

In my comment I was referring more to what the odds of success would have to be for parents to agree to various types of brace treatments.

For me, I would need a very high proven success rate for never needing fusion in the kid's life. Since bracing doesn't appear to have a very high short-term success rate (perhaps ~10%), and since there is no guarantee a kid is ever out of the woods, then the question is a non-starter for me.

But I think there are parents on here who would brace a kid with a much lower chance of success. Documenting the range of opinion on this probably could be a dissertation in some psych department. I would predict the opinions would map at least loosely to the regard for evidence and how they perceive the discomfort level (physical and mental) of braces for kids. For me, evidence is the alpha and omega. For others, it's the possibility of a hope I guess. I am not a psych major so I really have no clue about any of this.

[Pooka1]

AIS versus JIS

By the way, the bracing question is different for JIS versus AIS. BAS2101 brought in a confounder with one of her putative bracing success stories... a JIS case. Surgeons will not to my knowledge fuse a JIS case so I think you have to do either bracing or VBS or growing rods or VEPTR or something.

But again there is a choice and there are questions of evidence and kid comfort for JIS cases also in going with bracing versus a non-fusion surgical technique. I would probably go with bracing if my JIS kid was not a candidate for the non-fusion surgeries but only because there is no other choice.

[flerc]

Most (not all) of the expert respondents whose opinions were elicited in the study felt that bracing post menarchal girls would not affect outcome. (Something else perhaps for Chris to consider.)

They were also considering EDF technique combined with exercises?

[Pooka1]

They were also considering EDF technique combined with exercises?

No they were considering just bracing.

Surgeons will consider EDF and exercise as treatments when there is proof they might work.

[flerc]

No they were considering just bracing.

Surgeons will consider EDF and exercise as treatments when there is proof they might work.

Maybe the proof exists and they are not noticed.

[Pooka1]

Maybe the proof exists and they are not noticed.

So you are saying maybe the surgeons can't do the job they are trained to do? If a treatment worked then surgeons would tell their patients to do it.

There is nobody who has more training and knowledge than surgeons in knowing which treatments work and which do not work. They understand the evidence for conservative treatments.

They don't study alternative treatments like EDF as far as I know but a few do study certain exercise.

[flerc]

So you are saying maybe the surgeons can't do the job they are trained to do? If a treatment worked then surgeons would tell their patients to do it.

There is nobody who has more training and knowledge than surgeons in knowing which treatments work and which do not work. They understand the evidence for conservative treatments.

They don't study alternative treatments like EDF as far as I know but a few do study certain exercise.

I think like you, that nobody knows enough about scoliosis.
I don't believe surgeons are noticed about all non surgical treatments followed in the world, and maybe much of them have worked as it seemed to be happened.

[Pooka1]

I think like you, that nobody knows enough about scoliosis.
I don't believe surgeons are noticed about all non surgical treatments followed in the world, and maybe much of them have worked as it seemed to be happened.

These people should show this evidence to the surgeons immediately! They should publish in the top medical journals.

If they can help kids then why are they keeping this treatment a secret? They would become very rich if it worked so I don't understand why they don't show their evidence if they have it. It makes no sense to me.

[Snoopy]

I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

[flerc]

These people should show this evidence to the surgeons immediately! They should publish in the top medical journals.

If they can help kids then why are they keeping this treatment a secret? They would become very rich if it worked so I don't understand why they don't show their evidence if they have it. It makes no sense to me.

Much cases are not a secret, I saw it in Internet and I posted here, as other members. I donīt know if they are rich ore not. I know they are helping much kids, at least I know parents very happy with the treatment, but surely not all of them.

[Pooka1]

I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

I understand that point.

But we have a innocent parent and child here new to scoliosis who was being grossly and recklessly mislead. If citing journal articles corrects that situation then it is a good thing. Bad advice should be challenged every time because there are innocent kids involved.

[flerc]

I understand that point.

But we have a innocent parent and child here new to scoliosis who was being grossly and recklessly mislead. If citing journal articles corrects that situation then it is a good thing. Bad advice should be challenged every time because there are innocent kids involved.

Who knows what advices are goods or bads? Who knows if journal articles are showing all that works?..

I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

but I agree with this point, debates are not what he are needing, so I'll not continues it here.