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View Full Version : Large(r) curves as a child....what happened as an adult?



Leelee
08-30-2012, 10:14 PM
Hi all,

My name is Lisa....I posted here a bit as a teenager but haven't been around in a long while. I'm not sure what my signature is going to pop up saying, but to tell you a bit about myself I'm 22 years old, I was found to have mild scoliosis at age 10. I wore a boston until just after I turned 15, and at that time my curves were I believe in the mid 30's (I'm a bit rusty on the specifics now that I'm an old lady! HA!). I have not really had an in depth conversation with any doctor since I got the brace off (which was in 2005). I went back to my pediatric specialist I believe 2 times since then and I know my curves were in the mid/upper 40's at the last appointment (which was in early 2010 maybe?). I have never really been given any clear discharge directions or been told what to "expect" to happen with my scoliosis in the future. By my own research it seems that with curves in the 40's or so you do expect some progression. I'm looking to hear other experiences of people who had larger curves as a child and how it "ended up" in adulthood. Also...how often did you get yourself checked out as an adult? I'm wondering if it's too soon for a check up? I just graduated from college and it's looking that similar to many others in my graduating class I will be having...umm...a lot of free time this year and not very many commitments so it may be an opportune time to open up this can of worms. Thanks so much for any advice, I really appreciate it.

ETA- My signature popping up also reminded me that I do also have some degree of kyphosis (I guess 67 degrees!)...however I literally have no information on that front. It was brought to my attention at a second opinion when I was ~15 and I was just told not to worry about it. It was never even mentioned by my "primary care" scoliosis specialist.

--Lisa

LindaRacine
08-31-2012, 12:11 AM
Hi all,

My name is Lisa....I posted here a bit as a teenager but haven't been around in a long while. I'm not sure what my signature is going to pop up saying, but to tell you a bit about myself I'm 22 years old, I was found to have mild scoliosis at age 10. I wore a boston until just after I turned 15, and at that time my curves were I believe in the mid 30's (I'm a bit rusty on the specifics now that I'm an old lady! HA!). I have not really had an in depth conversation with any doctor since I got the brace off (which was in 2005). I went back to my pediatric specialist I believe 2 times since then and I know my curves were in the mid/upper 40's at the last appointment (which was in early 2010 maybe?). I have never really been given any clear discharge directions or been told what to "expect" to happen with my scoliosis in the future. By my own research it seems that with curves in the 40's or so you do expect some progression. I'm looking to hear other experiences of people who had larger curves as a child and how it "ended up" in adulthood. Also...how often did you get yourself checked out as an adult? I'm wondering if it's too soon for a check up? I just graduated from college and it's looking that similar to many others in my graduating class I will be having...umm...a lot of free time this year and not very many commitments so it may be an opportune time to open up this can of worms. Thanks so much for any advice, I really appreciate it.

ETA- My signature popping up also reminded me that I do also have some degree of kyphosis (I guess 67 degrees!)...however I literally have no information on that front. It was brought to my attention at a second opinion when I was ~15 and I was just told not to worry about it. It was never even mentioned by my "primary care" scoliosis specialist.

--Lisa

Hi Lisa...

The jury is still out on which curves progress. Even if we did know, knowing what the average curves will do doesn't really help you as an individual, unless you happen to be average. I think most doctors would tell you that you don't need to be watched by a specialist on a regular basis. If your curves progress now, there's very little likelihood that you would have a rapid progression, so knowing whether your curves are increasing doesn't really buy you much. If you start noticing significant shifts in your body shape, or if you start having significant pain, that would be a good type to seek out a doctor. If you ever plan to get pregnant, it could also be helpful to have xrays beforehand. In the meantime, doing regular core strengthening exercise would probably be helpful.

While you do have kyphosis, it's relatively small, as normal thoracic kyphosis is ~20-50 degrees. Nonetheless, if you ever have to have spine surgery, you're going to want to make sure that the kyphosis is taken into consideration, as you'll almost certainly end up with a condition known as proximal junctional kyphosis if the surgeon isn't very cautious about where your fusion starts.

Hope you're one of the lucky ones, and you dodge that bullet.

Regards,
Linda

Pooka1
08-31-2012, 07:01 AM
Linda had some good suggestions.

I will only add that the "average" person progresses about 1* a year if in your range. That will put you in surgical range in a few years though that doesn't mean you immediately need surgery. We have had a few testimonials where people had larger curves than you who do not progress for decades. On the other hand, we have heard testimonials where folks had collapsing spines (rapid progression) in both the structural and compensatory curves which were smaller than yours. That appears to be a huge wild card. In my opinion, that is only a consideration if a person has a structural thoracic curve and are in danger of losing their formerly compensatory lumbar if they wait to fuse the structural curve. That is then a countdown to pelvis which apparently could have been avoided. But it seems like you have a structural lumbar so this may not be something you need to consider.

Good luck.

rohrer01
08-31-2012, 08:52 AM
Hi, Lisa.
I was told by my scoli doc to be evaluated every five years. On my last five year check-up I showed progression, so it's supposed to be every 18 months to two years now for awhile, at least until progression stops. I didn't feel like going back to him at the time I was supposed to, but I did have a 12 month follow-up at my hospital so they could have their own baseline x-rays. I had some progression on the lower cuve at that appointment. It sounds like you've had x-rays within the last two years, so you could call your scoliosis doctor and ask him/her their opinion of when you should be seen. They might tell you to wait a few years or they may suggest coming in for an evaluation. I guess my best advice would be to let the scoli doc make that call (whether to come in or not).

Best wishes.

titaniumed
08-31-2012, 12:12 PM
LeeLee

Good to see you posting again.

I had twin 50’s when I was 16 and was a surgical candidate back in 1975. I elected not to do the surgery back then, and lived my life to the fullest. Skied extremely hard, jumped thousands of high jumps, and didn’t worry too much. Physically, my body was steel back in the old days from constant exercise.

My pains needed some help at around age 29, and started Chiropractic treatments which kept me going for another 20 years. We would shoot x-rays whenever I would have a major pain event. All along I knew, and my Chiro’s knew, that I would eventually have surgery, I couldn’t dodge that bullet.

My old surgical decisions were based on the times. Years ago, surgery was pretty scary since they didn’t have the technology that we have today. They also didn’t have many scoli surgeons, they hung out in the scoliosis centers of New York, San Fran, or Minneapolis. Now, you can have surgery done in Timbuktu. (smiley face) Its not India, its Africa. LOL
http://en.wikipedia.org/wiki/Timbuktu

Its seems that many of the older posters here will agree that the pains and seriousness of having 40,50,60 degree plus curves starts to become problematic after age 40. The body starts the downhill slide around this time, and the aches and pains start to become more frequent....All we can do is joke about it to keep our sanity. (smiley face) If I had to do it all over again, I would have had surgery at age 40. My 40’s were a painful period.

Since its been a few years since you have seen a specialist, it would probably be a good idea to get checked out at some point. I wouldn’t think about this as opening up that “can of worms”, if you made it to 22, you should be able to sail through your 20’s with no issues or minor pain events. Scoliosis for me when young was like having a very small icon on my desktop, that was rarely opened. Every once in a while you take a peek as a reminder, but its located far from your Chrome icon. I kept my scoli thoughts to a minimum and had a blast and lived my life.

Congratulations on graduating college!

Keep active!
Ed

Leelee
09-12-2012, 09:01 PM
Thanks everyone for the advice! Pretty much what I expected....a wait and see. Oh how I wish there was some kind of test to tell you exactly what life will be like in the future so you could go ahead and get decisions over with haha. Ed I love the analogy about the icon. That's exactly what I feel. Most days I hardly think about scoliosis but every once in awhile it pops into my head and I start wondering about what I should be doing with my scoliosis haha. Thanks again for the advice everyone! Much appreciated!

Pooka1
09-12-2012, 09:10 PM
Leelee, I love how you noted the exact time of day when you stopped wearing your brace. Excellent. :-)

If you ever need surgery, will you regret wearing the brace for some many years?

Jenna.KB
09-13-2012, 04:25 PM
Hi Lisa,
I might be one of the wild cards but I was discharged at 21yrs old after 8yrs of no progression in my supposed compensatory curve.
I wasnt told I needed any further check ups.
I then went back to my GP at 25yrs old an the xray showed a curve of 95*.At 27yrs old iv just had a fusion from T1 to L5.Due to what's happened to me I would say to get checked out even if your told you dont need regular check ups