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desheah
11-16-2007, 09:21 AM
pardon me because i have not read any of your threads on this part of the nsf board. i was hoping that you might be able to help me comprehend scoliosis after one stops growing. my son will be 6 yrs old next week and so far we have been doing well with casting and bracing (see my signature). a thought popped into my head regarding the possibility of avoiding surgery altogether and getting through the dreaded adolescent growth spurt. could you explain your experiences with coming out of adolescence with a curve (what is the #? and has it increased after you've stopped growing?) but no surgery, back pain, deformity, and why you've elected to have surgery now?

any information you can provide to help me understand how scoliosis affects this part of your life would be most appreciative.

my best,
deshea

abhbarry
11-17-2007, 10:25 AM
Hi,
I did not have scoliosis until I was a preteen. You must be going through a lot with your son and I applaud you for trying to get as much information as possible! I don't know if I can be helpful at all, but my curve did keep progressing after I stopped growing. I had been braced as a teenager. We all have different experiences though. I know of people whose curves did not increase past their teenage years. However, as my surgeon told me, a curve over 50 degrees is more likely to keep increasing. I am now 28 and 5 months post-op. If my parents had known more about scoliosis and the surgery options, I would have preferred to have done the surgery earlier (but then again the surgery is much more advanced now).

That probably wasn't that helpful, but I wanted to wish you the best of luck with your son.

Blessings,
Anya

desheah
11-17-2007, 01:11 PM
anya,

thanks so much for your reply. you have been through a lot yourself. you are right about having surgery later. on the one hand, there are advances out there in technique and instrumentation that i'm sure you have benefited from BUT you are older and recovery from such major surgery and halting your life is a lot harder.

i guess my original intent for asking these questions is whether or not it is feasible for my son to go through life with a curve (small, medium or large) and not have surgery -- what are the implications for living a normal relatively pain free life versus going through surgery in his teen years with further advances in technique and instrumentation (possibly even fusionless . . .) and living a normal relatively pain free life . . .

i know that no one has a crystal ball, but just trying to get a feel from others further along in their journey.

again, thank you for your response.

my best,
deshea

suzyjay
11-17-2007, 01:47 PM
I had scoliosis since I was 11 yrs old I am now 45 and 9 months post op fused from T4 to L4. Before surgery I had around a 58 degree lower curve and 48 upper curve and I never wore a brace, so it progressed. I never experienced any pain nor did it stop me from doing any activity growing up. At 14 yrs old it really got bit and since then I have been hiding it, wearing big shirts. I was so afraid of anyone touching me on the back or happen to bump into me that they would find out my big secret. Growing up is hard enough having this deformity makes it worst. This deformity has made me the person I am, shy, ashamed, low self esteem and never really getting close to many people. I feel much better about the way my back looks now, it would be better if I didn't develop a staph infection (from the surgery) because it dislodged two screws, that now stick out of my back and have to be fixed with another surgery. If your son needs surgery, it is much easier on children and they usually recover very quickly. Be careful to pick out a experienced doctor.

Sue

rosie1108
11-17-2007, 05:58 PM
Deshea, I'm not sure exactly what you mean by a normal life... I feel like I have had a pretty normal life. :)

It sounds like you have made all the right choices with your son's treatment, spinecor is such a fantastic protocol, I went to a seminar where I was trained how to apply the treatment and fit patients for the braces, and I can tell you that I am truely excited to see where their treatments will go in the future.
As long as his curve stays small, there is a good chance that he will have a "normal" life, and never need surgical stabilization. Keep in mind that most of us on this forum have ideopathic scoliosis, which is different than neurogenic scoliosis or those that are a result of trauma or other conditions.

My scoliosis was first diagnosed around 8-9yrs old, but started slowly getting worse, some times 6 months would go by without any changes, other times it would be 5+ degrees worse in just a few months. When I was 13, I wore a boston brace for about a year and a half, it seemed like it was helping at first, but then it got much worse very rapidly. by the time I was 15, my curves had progressed to 58o/55o, and surgery was recommended. At the time, I had very little pain, most of my problems were a result of the bracing, and I let a normal and active life. My parents made the decision that they did not want me to have surgery, but try chiropractic and other things as well (I wish spinecor had been invented at that time). The other therapies helped me live a very pain free life.

It was not until I began my education at chiropractic college that I realized how severe my scoliosis was, I had never known anyone who had severe scoliosis, and since I was my pain was intermittent (and I was used to it) I didn't think that there could be any real long term health risks. My most recent x-rays show that my curves are about 67o/66o, meaning that they have progressed about 10 degrees in the last 7 years. That is a little above average, generally if a person has a curve that exceeds 40 degrees at skeletal maturity, they can expect a progression of no more than one degree per year.

I don't want to scare you, but unfortunately with curves that are 70o and up, there is a risk of impaired organ function, in my case I am very close to that and do have restriction to full expansion of one of my lungs, which has caused me to get pneumonia twice in the past. Much like someone else said, I am glad that I did not have the surgery then, because of the advancements that have been made, but at my age I can expect a reduction of my curvature to around 10 degrees.

Basically, my advice would be not to worry too much, orthopaedists know a lot about the likelihood of progression, mostly you will have to wait and see. As long as you are diligent in tracking the curves, your son should not have any major complications.

HGD24
11-19-2007, 03:52 PM
My scoliosis was discovered during a school sports physical when I was 12. Every year the dr. would look at it and say, "It's mild, nothing to worry about". When I was 18 and went for my college entrance physical, the dr I saw then asked my parents why they hadn't done anything about my scoliosis. They told him what the school dr (who happened to be this new dr's father) kept saying...that it was mild and nothing to worry about.

The new dr sent me to an ortho who measured my curves at around 55 degrees and told me my only choices were surgery or a brace. I wasn't up for either, was in no pain, was active and playing sports so I opted to do nothing.

During a routine yearly physcial when I was 28, my dr discovered that I was getting shorter. I was sent to a bone specialist who sent me to my ortho. He measured my curves and found them both to be 75 degrees. Again, I was in no pain, continued to be active, play sports, go skydiving and live as normal of a life as I always had.

The progression of my curves was obvious and it was only going to continue. I decided to have surgery at the age of 30 rather than waiting any longer. Making the decision was a long, difficult process that included my husband, family, friends and medical professionals. I don't regret it for one minute though...I'm still able to play sports, ride roller coasters, travel and do everything I did pre-surgery.

Hope that helps!

jillw
11-20-2007, 09:07 AM
Deshea,
Its me from the Spinecor board! I don't have scoliosis so I can't answer your question first hand, but I thought I'd pass on a story about a friend of mine. She isn't on any of these boards because she isn't having much trouble so she never thought to look for support on the internet. She was diagnosed at 10 years old with approximately a 35 degree curve and she wore a Milwaukee brace for the next 6-7 years. She doesn't know what her curves were when her treatment was finished or what they are now, but she never progressed to surgery. She is now 41 years old and so far so good. I realize she has a good 35+ years left and because she hasn't had Xrays she doesn't know if it has progressed so I don't know what the future holds for her. It hadn't occurred to her to have Xrays because for the most part everything seems fine to her. Granted, she does have some days with more back pain than other. She said on those days, when she is feeling scrunched up, she has found yoga to help. She is one of the lucky ones because for the past 20 years scoliosis has been a thing of the past and not her present life.

Jill

bsprings
11-24-2007, 06:59 PM
Deshea,
I am 46 and had surgery 1 year ago. I was diagnosed at age 5 and wore a Milwaukee brace throughout my teen years. My curve did progress and surgery was necessary. My curve was 90 deg back then and it got even worse-plus I developed severe kyphosis (rib hump). For the first time in my life I feel good about my body! Surgical methods were primitive back then compared to what they are today, so maybe it's a good thing I waited, but if your son has a severe curve it would be easier on him now, plus he would not have to suffer years of feeling "deformed". I think the key is to find a great doctor who can advise you. Hope this helps Deshea!
Cathie

flowerpower
11-26-2007, 11:35 AM
Hi Deshea,

I also go on the VBS support site but haven't participated lately.

I wore Milwaukee brace about 4-5 years when I was a teen. Bracing failed and surgery recommended. I was 18 then and refused to have surgery. The dr. told me if I didn't have surgery I would start having significant back pain/problems by the time I was in my 40's and may have congestive heart problems by my 60's. Back then I didn't care b/c I thought that was sooo old and figured that my life would pretty much be over by then anyway :rolleyes: . I went on with my life, got married & had kids.

Well, let me tell you; I am now in my (almost) mid 40's and have been experiencing increasing back, shoulder & neck pain, so the dr. was right on that one. As far as seeking treatment for myself I now find that decision difficult because as you can see in my sig. I have one son who already has been treated for scoli and another who probably will in near future. Plus, with ever increasing insurance costs that don't cover vision or dental it is financially difficult. Also, I have 3 kids and a hubby who are dependent on me which also makes this difficult.

I do mostly wish I had surgery when I was younger, before having kids, etc. The recovery back then was horrendous - I was told a body cast and bedridden for up to a year. But even with the advances in surgery today, I have to wonder how my (not so old :rolleyes: ) 40 y.o. body would handle the surgery. I feel like it's a catch-22 either way.

I'm sorry this probably wasn't helpful at all, just wanted to give you another perspective. I wish you all the best with these most difficult decisions.

Renee

desheah
01-10-2008, 08:28 AM
i appreciate everyone's response to this thread. it does put my mind at ease that lucas will one day have this behind him.

interestingly enough, i found this article on pubmed which i found very interesting since as a parent, i'm always concerned with cobb angle after an x-ray is taken. this article, which is mostly discussing surgical correction, thinks that instead surgeons should look at the bigger picture of symmetry with the compensatory curve and not overcorrecting the major curve.

again, thank you for everyone's responses.

my best,
deshea