Newbie on the Block...

[cokafor]

Hi.

I'm Chudi and I am new here to the forums. This is my first post and I don't really know what to put down. So, I guess I will tell a little about my background, and I hope things take off from here.

Im 19 and I have had scolosis for about 7 or 8 years now. Im not sure when it first started developing, but my family and I first recognized when I was about 14 and just starting high school. I was flat out scared when I first heard that I had scoliosis, and I can remember my mother crying right there in the doctor's office. What made it worse? He said I have no other options to treatment except surgery.

My mother would NOT have that, seeing as that I already have a sibling with scoliosis, and it was hard for him to adjust to life with it, so she didn't want that with me. At the same time, she didn't want surgery, so we went for bracing instead.

Long story short, I got the brace, and surprisingly, I went through a couple of them. I still have a big curve, and I'm living day to day now, with college and all.

If no one minds me asking, could anyone share how their experiences were when they found out they have scoliosis? Did you find anything your doctor did for you to be helpful? And finally, can anyone pass some advice along about how to deal with bracing? I know, it may be a dumb question, seeing that I had to wear a brace for years now, but I still worry about how it looks on me, and how helpful it really is.

Thanks a lot guys.

[rainbow2010]

I found out I had scoliosis when I was 15. My curve was progressing quickly and the doctor told me that if I didn't have surgery, I would be dead by 30. I chose to have the surgery. Back in the 70s you spent a month in the hospital and I spent 9 months in a plaster body cast. The only clothes I could get to fit over it were maternity clothes. It was not fashionable to be pregnant in high school back then and I got called a lot of names. I had a friend who found out at the same time he had scoliosis. He chose not to have the surgery and he died when he was 28.
I am the mother of 2 and grandmother of 2. I carried both girls full-term and they were both almost 9 pounds at birth. One daughter had a small curve that she outgrew and the other developed hers the same as me. She had her surgery at 14 and spent 5 days in the hospital and had no brace or cast post-op. She is a college student now. Was going for early childhood education but has changed her major to occupational and physical therapy. She is very active. She teaches hip hop, ballet, and pointe (she loves to dance). Ahe didn't let her fusion stop her from dancing during high school or even now! I used to be a teacher. What I went through helped me understand special needs kids and be a better teacher.
Scoliosis can only change your life if you let it. I kept doing what I enjoyed but just a little bit different. My daughter calls her donor bone Sir Francis and when she would get in trouble, she would say it was Sir Francis who did it.

[cokafor]

Hi:

I'm sorry to hear about your friend from way back. That must have been really traumatizing. Reading about that kind of puts things in perspective for me: I guess wearing a brace isnt the worst thing in the world to deal with. Looking back, I could have accepted not to have ANY treatment done on me; needless to say, I'd be going through hell now. Thank you for sharing that with me.

I am also happy to hear about your children and grandchildren. I thought it was kind of funny that she actually named her fusion site Sir Francis. I would have never been as upbeat as THAT for any type of major surgery like that.

I myself am, or at least was active. I never played sports, but I did a lot of exercise, lifting weights...the usual. I stopped mainly because of pains in my legs and the insurmountable work I have to do in college. Luckily I havent gained weight...yet.

Again, I have to thank you for sharing with me. It probably didn't take much, but its amazing how something as simple as a blog post can really make you stop and think. I know that what I have, scoliosis, is bad and not really what I want to have at this time of my life. But I can't let that stop me from doing anything. I have way too much on my plate to worry so much about it.

Thanks for letting me see that.

[Pooka1]

If no one minds me asking, could anyone share how their experiences were when they found out they have scoliosis? Did you find anything your doctor did for you to be helpful? And finally, can anyone pass some advice along about how to deal with bracing? I know, it may be a dumb question, seeing that I had to wear a brace for years now, but I still worry about how it looks on me, and how helpful it really is.

Thanks a lot guys.

Hi Chudi.

I am wondering why you are still wearing the brace. If you are female, then you are almost certainly past the point of skeletal maturity. If you are male, you have very likey passed that point. There is no evidence bracing prevents progression in skeletally mature patients.

So the advice on how to deal with bracing would be to stop wearing it. Please ask an expereinced board-certified orthopedic surgeon specializin in scoliosis this exact question.

Do you know the angle of your curves and where they are located?

I can only imagine how my daughters felt when they were diagnosed. I know my husband and I were shocked and depressed. We got over it.

The surgeon did help them... he fused them. They look and feel normal. They are not expected to need any further surgery for their scoliosis. They have moved on.

Good luck.

[titaniumed]

Chudi,

Welcome. Here is a great thread that talks about Brads experience, and also mine when we found out we had scoliosis. Please remember that this was many years ago and things have changed quite a bit since then. Dr Bradford is a scoliosis pioneer.

It’s a long one, but it’s a great read.
Ed

http://www.scoliosis.org/forum/showthread.php?t=9393

[cokafor]

Hi Chudi.

I am wondering why you are still wearing the brace. If you are female, then you are almost certainly past the point of skeletal maturity. If you are male, you have very likey passed that point. There is no evidence bracing prevents progression in skeletally mature patients.

So the advice on how to deal with bracing would be to stop wearing it. Please ask an expereinced board-certified orthopedic surgeon specializin in scoliosis this exact question.

Do you know the angle of your curves and where they are located?

I can only imagine how my daughters felt when they were diagnosed. I know my husband and I were shocked and depressed. We got over it.

The surgeon did help them... he fused them. They look and feel normal. They are not expected to need any further surgery for their scoliosis. They have moved on.

Good luck.

Hi:

Im wearing the brace now because my family and I chose not to have surgery earlier. I wear it to stop some of the pain I have when I don't have anything on.

For the degrees of my curves, I dont know specific numbers, but as of now, they should be between 35-50. Thats a gross estimate. I also have a double curve thats in the thoracic and lumbar areas.

I personally want to have surgery done now, rather than later, but my family would not prefer so. I know I will have to eventually, its just a matter of time.

[cokafor]

Chudi,

Welcome. Here is a great thread that talks about Brads experience, and also mine when we found out we had scoliosis. Please remember that this was many years ago and things have changed quite a bit since then. Dr Bradford is a scoliosis pioneer.

It’s a long one, but it’s a great read.
Ed

http://www.scoliosis.org/forum/showthread.php?t=9393

Hi Ed:

Thanks for the link. Unfortunately, I cant read it all now because of schoolwork, but I will definitely. If you dont mind me asking now, do you think you pass along any contact information for Dr. Bradford? I would like to speak with him about myself personally, and then ask some questions about scoliosis in regards to other young adults my age.

Again, thanks.

[titaniumed]

Chudi

Dr Bradford has retired....

It would be best to talk to a "scoliosis surgeon". Not just a regular Orthopedic, but one who does ONLY scoliosis surgeries, and on a regular basis. My surgeon did 19 years of schooling with a fellowship. When you study the spine that long, you don’t do knees. If you need help finding one in Jersey, we can post lists for you.

Just because you talk to one doesn’t mean that you have to make a decision. Its just good to have one you like and trust, and have documented dated x-rays burned to disc (if possible) for future comparison. Its good to have these in your possession in case you move or the Doctor throws out your records. I've had this happen to me years ago.

I used to wear a brace years ago, I know what you mean by stopping the pain or at least reducing it. I used to ski in my brace! Believe it or not, it was cold.
Wearing it will not correct your curves, or necessarily "hold" them. I did have twin 50s when I was your age and my curves held for many years.

We have a great group of experienced scolis here. Ask any questions you like.
Ed

[cokafor]

Hi Ed,

I guess I should talk with a doctor. Better yet, have my mom talk with him also. I think she is convinced that the brace will straighten me out, litterally. Over time, I realized that it wont actually do that. But I guess I will have to see about that, won't I?

Also, if you don't mind me asking two questions this time, would it be possible to get a list, or post, of specialists around the tri-state area (nj, ny, etc.)?

I remember the first time I went to Shriner's Hospital in Philadelphia, and the visit I had with a local orthopedist in my city. They both said, flatly, that I would need surgery right then and there. I don't remember any of them offering any type of consolation. My family and I pretty much dealt with what we felt on our own. I just want to know, did you ever encounter a physician who, after giving his diagnosis, didn't really offer much help besides a drastic decision? I ask because I assume you were faced with the decision of whether to have surgery or not at some point.

Anyways, thanks again,
Chudi

[titaniumed]

Chudi

It would be a good thing to go to a "Scoliosis" surgeon. Any other Doctor just wont have that expertise and cannot offer "credible" data. Yes, take your mom. 2 heads are better than 1. Its ok not to make a decision, that’s fine, but at least have an expert take a look, and get copies of your x-rays for future comparison.

The bracing thing.... Well, I wouldn’t worry about having to wear it. You can wear it to help with pain, but in the long run, if you are a candidate for surgery, with 40s or 50s, someday you "might" need surgery. You can get "temporary" correction,(I've been there, and have documented x-ray proof) BUT, it just wont hold. I tried, and many others have also.

Yes, I was told that I needed surgery in 1975. Man-O-man! Woah!, lets put the brakes on Doc! You want to do what? I'm an active skier! Well, you know I waited.

You must be in southern Jersey if you went to Phily. Some of the well known are up in NYC, Dr Boachie at HSS Hospital for Special Surgery, Dr Errico etc. Linda has a list on her site. Take her quiz.
http://www.scoliosislinks.com/
http://www.scoliosislinks.com/ScoliosisSpecialists.htm
http://www.srs.org/find/

I'm sure there are good Docs in Phily.
Let us know what you decide.
Ed

[cokafor]

Hi Ed,

Sorry for the delay in responding. Schoolwork is killer, as usual...

I would like to speak with some surgeons about my current situation. If you could give me a couple names and addresses that I can contact, I would really appreciate it.

Going back to the schoolwork, I was wondering if I could ask you your opinion about this plan I am trying to propose for a school project. I am researching scoliosis and its affects on adolescents, and as a potential solution to the problem of noncompliance with some of them, I want to incorporate something of a new addition to the curriculum of medical schools to additionally prepare them to handle the psychological aspects of handling adolescent patients.

Do you think that would be a good idea? If not, do you mind giving me some advice on how I could make it better? If you do like it, what else do you think I should add to it? I really do appreciate the feedback.

THanks a lot,
Chudi

[Pooka1]

I will look forward to what advice Ti Ed has for you but I was confused by this part...


and as a potential solution to the problem of noncompliance with some of them,

Non-compliance with what and what problem does that cause?

Just wondering.

[jrnyc]

do you mean non-compliance with wearing brace?

jess

[Pooka1]

do you mean non-compliance with wearing brace?

jess

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.

[titaniumed]

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

[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. :rolleyes:

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! :rolleyes:

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