Newbie on the Block...

[cokafor]

Hey maybe you are right.

Chudi I hope you aren't beating yourself up over non-compliance with brace wearing. There is no good evidence bracing works. After all these years. Considering all the studies and all the commentaries on bracing, you can never assume bracing lets anyone avoid surgery.

Medical schools know this.

Hi:

Yeah, I think I figured that out. But still, I think participating in some treatment is better than no treatment at all right? There are teens out there with scoliosis, who because of their disdain of their condition, choose not to follow what was prescribed to them. There are those who don't even like observation. My plan is to try and stop that. But my twist on this is that I am not going to approach from the teen's perspective, as I thought that other solutions proposed to this problem approached it this way. So I am going another route and am trying to see if there's anything that the physician him/herself can do instead to help. I discussed with a few people, and they liked that take. But I guess I still have to improve it bit...

Also, I am not trying to say bracing will definitely help anyone avoid surgery. After all, I am STILL wearing one, and I know I will have to have surgery someday. So for certain people, its inevitable. But I'm saying, at the least, it is better to follow treatment than to do nothing about it at all.

Thanks for the feedback. If there is anymore suggestions, please let me know. This was really helpful.

Chudi

[cokafor]

do you mean non-compliance with wearing brace?

jess

Hey:

Yeah, but not specifically just bracing, more so on not complying with treatment in general. But I am focusing a little more on bracing.

Chudi

[cokafor]

Chudi,
I agree on the bracing thing. I’m also assuming this is what you mean by non-compliance. Bracing is an attempt, like traction, performed by Hippocrates in 400BC. People have been debating this for 2400 years, and still don’t know the pros and cons on this. Lately, I have read about dangers involving traction. Hmmm...

Check out the links I posted for a surgeon. Linda’s site and SRS. Insurance companies don’t like it when you leave your home state.

I found out I had scoliosis when I was 16. I can offer some views from an older perspective. You know, Brad would be great at this... He was a congenital, so he would be of great assistance. He truly is a trooper and had an extreme surgery done by a master back in the day. He also has a fantastic attitude.

I think that education and communication about scoliosis with a child is key. The correct amount of facts given at the proper age with positive flair is the way to approach this. No child needs to know about extremely rare complications from surgeries.

You would have to think of questions to ask, how you want to structure and we will try to answer. Do this, and I will PM Brad. You could start a new thread on this.

Sharon
I will reiterate....Love your sig! Comedy on every post!
Ed

Hey Ed,

I will check out that link and see if I can speak with the doctor. As usual, time doesn't permit me to do a lot of things. But now that I know that he's pretty approachable, it makes it all the easier. Again, thanks for the link.

Also, I think that communication with the child is important also when dealing with scoliosis, but at the same time, I think there are families who do try to communicate with their loved ones about scoliosis, and for some reason, it doesn't work. That's why I am going the different route and approaching this problem from the physician's point of view. I think it would be a cool twist on handling this problem (which is noncompliance to treatment among adolescents...I forgot to mention that in the earlier post...)

Thanks for the feedback. Keep it coming in.

Chudi

[foofer]

Hello Chudi...

....and welcome! Very nice to hear of a young woman devoted and interested in the future of scoliosis. I have it, my kids do not- very fortunately- but my future grandchildren are likely to- so it makes me hopeful whenever I hear of new ideas or interest. So thank you, from my possible future family.

I think you are confusing "Brad" and "Dr. Bradford"....Dr. Bradford is a scoliosis doctor who has retired, according to Ed- and he would know. "Brad" is a scoliosis patient who suffered at a very young age and was treated during a tough pioneer era of scoliosis treatment. This was the man that Ed said he could contact via PM (private message).

The thread that Ed referred to early in this thread is one where he and Brad, the patient, have a conversation about their early childhood and teenage impressions of their condition (and yours!) (and mine!). I hope you read it as it would be info for your research project.

If you do see a doctor in your area, or in the NY area- and I hope you will cut to the chase and see one of the best- you are so close and it would be well worth it. While there, you could ask the doctor to put you in touch with a few other patients who are/were braced and you could share impressions. This also might be helpful to your project- to trigger a specific avenue to pursue.

I am assuming you live at home? Or that your mom is in charge of your insurance details? Perhaps she could research the logistics of seeing a scoli doctor who can help you and make sure your insurance will cover adequately. You don't need to jump into surgery if the timing is wrong, or if you or your family are not ready, but to have a platform of knowing your curve measurements, and having some questions answered, misconceptions addressed....very valuable.

Keep posting!

[Pooka1]

Hi:

Yeah, I think I figured that out. But still, I think participating in some treatment is better than no treatment at all right?

No not if the treatment is hard and had side effects, both mental and physical. There should be some very good evidence first before making kids go through that type of treatment such as bracing.

There are teens out there with scoliosis, who because of their disdain of their condition, choose not to follow what was prescribed to them.

Well if they choose not to based on lack of evidence for efficacy then they are on pretty firm ground to not follow what wsa prescribed. That is the present case with bracing.

There are those who don't even like observation.

Now here is a big problem in my opinion. You should always know what the curves are doing even if there is no effective conservative treatment so that you know when to pull the trigger for surgery.

My plan is to try and stop that. But my twist on this is that I am not going to approach from the teen's perspective, as I thought that other solutions proposed to this problem approached it this way. So I am going another route and am trying to see if there's anything that the physician him/herself can do instead to help. I discussed with a few people, and they liked that take. But I guess I still have to improve it bit...

I see what you are saying. It's a good idea and is likely valuable. Everyone should at least be observing their curves. But with respect to conservative treatment, all the physician can do is honestly convey the state of evidence. They can say they think bracing works but they can not say that they have any good evidence it works. Some physicians don't brace at all. There is a reason for that. Also some patients will familiarize themselves with the literature and know the score even before talking to a surgeon. Everyone (surgeons, parents, etc.) is dealing with the same literature on bracing.

Also, I am not trying to say bracing will definitely help anyone avoid surgery. After all, I am STILL wearing one, and I know I will have to have surgery someday. So for certain people, its inevitable. But I'm saying, at the least, it is better to follow treatment than to do nothing about it at all.

Well I would say it is better to follow a treatment that has been shown to work. It might be better to NOT follow a hard treatment that really has no good evidence it works and has side effects.

Getting back to your objective, I agree that some folks here can really contribute valuable comments, in addition to your own, about how to represent a child's perspective to a surgeon. That said, I think many of these experienced surgeons know the score on that already.

[jrnyc]

i dont know that it is disdain..maybe it is more likely fear on the part of the teens...and wearing a brace is not easy...
just wearing a nite brace (with braces for my teeth) when i was a kid was too much...it hurt! while sleeping, in the middle of the nite, without even knowing it, i took it off and tossed it across the room!

sometimes, when people are afraid, they act as if ignoring something will make it go away, or are in such denial, they refuse to acknowledge that the condition even exists...

jess

[mvarice]

Chudi
I have Scoliosis due to a birth defect (I have an extra rib that gave me an extra 1/2 vertabrae)...I have always had dr's apointments and braces that I had to wear. For me when I think back to my teen years I think about wanting feel and be like everyone else. I wanted desperatly to be "normal". I hated my brace but I wore it when I was supposed to. When I was really little my doctor told my parents that I should start swimming. So at 5 years old I started swimming competitively. Since I couldn't wear my brace when I was swimming I did it as much as I could. I had my surgery when I was 13 in 1988. And as soon as my doctor said I could start weaning off from it, I never put it on again.

Ed
thanks for sharing those posts between you and Brad. Having my current back issues has brought back a flood of emotions from my past. I am glad for my Scoliosis it definetly made me who I am today. Stuborn and I wont take a no you can't do that as an answer. Although this can be a blessing and a curse. I to felt like I had to prove myself capable of doing everything anyone else can do.

Melissa

[titaniumed]

Melissa

Thanks, but actually it was Brads thread, and his mom. I just thought I would expand on it a little since the subject matter is a very rare thing......two boys dealing with scoliosis back in the 60s, 70s, and 80s.

And only here on NSF! and HBO thought they had all the good stuff wrapped up! Ha!

Glad that the stories are of some benefit.....Scoliosis years ago was extremely scary....There were many unknown’s.

Ed