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Meg's mom
06-19-2006, 10:00 PM
Our daughter Meagan was diagnosed with scholiosis on June 1st. Upper 25 degrees lower40 degrees. She is 13 1/2 and the doctors say she is done growing by looking at her hand xray and her risser score was between a 4 and a 5. She started her period a year and a half ago. The first doctor said to just wait and see because she is done grownig there is no need for a brace. At first we were thrilled and celebrated that she would be able to continue dancing and playing soccer without having to wear a brace. But after coming down off of the elation I got to thinking ---what if she's not done growing?--- what if it does progress? She is so close to being at the point of surgery. So we had a second opinion just last friday and this doctor basically said the same thing. The first one saw that I was worried and said that we could go ahead and put her in a brace. I got the feeling he was saying this just to appease me not becausse he really thought it was going to benefit Meg. The second Dr. made a good point. If we put her in a brace when do we stop? He said typically brases are taken off when girls are done growing. I don't know what to do! I am so scared and feel so guilty for not catching it sooner. Anyone out there have any advice or similar situation? In recommendations of Drs. in the Portland OR area? Thanks,
Meg's mom

LindaRacine
06-20-2006, 12:42 AM
Hi Mom...

From the research I've read, putting your daughter in a brace now would be a lesson in futility. Her curves might or might not increase, but bracing probably wouldn't have any effect on that anyway. Curves above 40 degrees have some chance of progressing throughout life. Like the second specialist suggests, when would you stop the treatment?

Regards,
Linda

Meg's mom
06-20-2006, 06:52 PM
Thanks Linda. I guess I just need to keep hearing it over and over again to make sure we are doing the right thing not putting her in a brace. I just made an appt. for her younger sister (11). I checked her out and it looks as though she could also have the beginnings of it. I hope not. I hope I am just over reacting. But I don't want to be too late again. Thanks for the support.
Meg's mom

Carmell
06-21-2006, 01:35 PM
Hi Meg's mom,

I agree - bracing now is a non-issue. There isn't a good argument to even try. IMHO.

Your daughter sounds similar to mine. My daughter is now 20yrs old. By the time she was skeletally mature at age 16, her curves were 39 (lumbar) and 26 (thoracic). At her last checkup at 18.5, her curves measured 35 (lumbar) and 15 (thoracic). Basically, as she grew the rest of her teen years (she didn't grow any taller after age 14) her spine started getting a bit better. She did wear a TLSO brace at night for about 6 months right after her diagnosis, but I'm not convinced the brace did any good. We'll never know.

My point is that with numbers that your daughter and mine have, there is a reasonable risk to take in not intervening with surgery. Scoliosis is rarely an emergency situation. The statistics show that a lumbar curve less than 40 degrees at skeletal maturity is not likely to progress. There are always exceptions to the rules, but I'm hoping my daughter fits that category - that her spine will never get worse than it is right now. Hopefully she has good body balance and overall support for her spine.

There are other things to consider - if she's having chronic back pain, or if her body is not well-balanced, or if she has some other reason to consider surgery, then that's reasonable. My daughter has a significant rotation of the spine, so if you know what you're looking at, you can see that she has a physical deformity. Her waist is uneven, her shoulderblades are uneven, etc. Until this becomes a bigger problem, we won't be considering surgery for her.

Good luck and I hope you find the peace of mind you need to make the best choices for your Meg.

Celia
06-22-2006, 11:51 AM
I always seem to be on the other side of the fence with some issues :D It's not that I like to be argumentative....really :p

Anyhoo....there was a SRS presentation last year which discussed peak height velocity as a predictor for curve progression. Dr. Vishwas found that 15% of children who were at risser 4 had MAXIMAL curve progression at that point in time. Statistically it doesn't seem very high, but we're talking maximal curve progression and excluding children who still had *some* curve progression at risser 4.

I interpret that study to mean that Meg is very much at risk for curve progression and I would definitely brace. As far as I know, bracing can still be effective for 40 degree curves. Oh... in case you're interested, here is the presentation at 10:15 a.m.


http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12

LindaRacine
06-22-2006, 12:28 PM
Hi Celia...

I don't know enough about it to really debate the issue. However, I wonder if, by the time the brace could be built and the kid built up to the maximum hours in the brace, she'd be at or close to Risser 5.

Also, I note that it appears that the paper was never published, which makes me wonder if s/he found that there was a flaw in the study.

--Linda

lelc2002@yahoo
06-22-2006, 12:55 PM
It all is very interesting to me. I had curves in the mid 40s a teenager. upper & lower. I wore the M. brace for about 2 yrs-I believe I was about 14-15...
Now my curves are 60/60 or even probably more since I was measured last Dec.. When I was in the brace I was held at 37 or so, but about 40 out of brace(per my mom's notes). I really feel my 2 pregnancies increased my curves significantly at my particular age (39) for the 2nd birth.. guess you never know...Ly
ant/post surg this aug 1st

ps. don't fret too much if she does have to wear it for a spell in high school, it was'nt so bad! Plus I made up for any fun I missed when I went to college, believe me!!!! :) http://lynnebackattack.blogspot.com

Meg's mom
06-22-2006, 06:52 PM
Thank you for your reply. I looked into it and everything I read about PHV indicates that Meagan is allready passed that. She is fully developed and started her mensus over a year and a half ago. In just about everything I read it said PHV didn't typically occur after sexual maturity. If you could find the article you saw that in last year I would love to see it. thanks again

Meg's mom
06-22-2006, 07:05 PM
Your reply is very reassuring. How old was your daughter when she was diagnosed? Did she continue to wear her brace after reaching skeletal maturity? If so for how long? Do you account for her improvment of of curves to wearing the brace or did the degrees change after she was out of it? Sorry for all the questions but this is new to me and I am so worried for her. She doesn't complain of any back pain and continues to dance a play soccer with no problem with balance or coordination. I hope she can continue to do the things she loves. Thanks again. Meg's mom

Celia
06-23-2006, 12:04 PM
Hi Celia..

Also, I note that it appears that the paper was never published, which makes me wonder if s/he found that there was a flaw in the study.

--Linda


It appears that a lot of the presentations at that seminar have not been published yet, so I wouldn't jump to conclusions and say it might be flawed. The study by Dr. Vishwas reinforces findings of a previous study by Little et al. I guess maximum curve progression for 15% of the children at risser 4 is a little surprising. Cessation of growth was defined at height velocity of < 2 cm/year. Menarche and risser scale were identified as poor correlates for maximum curve progression.

Celia
06-23-2006, 12:37 PM
Thank you for your reply. I looked into it and everything I read about PHV indicates that Meagan is allready passed that. She is fully developed and started her mensus over a year and a half ago.


According to the study in the link I provided, menses occurs on average 4.5 months post PHV and cessation of growth occurs 26.3 months post PHV.

Carmell
06-23-2006, 01:42 PM
Hi again,

<<How old was your daughter when she was diagnosed?>>

Kara was diagnosed on her 13th birthday. She started her period 3 months later. Her curves when diagnosed were 23 lumbar and 15 thoracic (approximately).

<<Did she continue to wear her brace after reaching skeletal maturity? If so for how long?>>

She began wearing a brace 4 months after diagnosis - one month after menses. She wore the brace for only 6 months total. She only wore the brace at nighttime (teenage drama - couldn't get her to wear it at school).

<<Do you account for her improvment of of curves to wearing the brace or did the degrees change after she was out of it?>>

Within a year after she stopped wearing the brace, her curves were at their highest point - 39 degrees lumbar and 26 degrees thoracic. By this time she was approximately 15.5yrs old. At age 18 (her last/most recent xrays) her curves measured between 30-35 degrees lumbar and 16 degrees thoracic. I don't have scientific proof of why she improved, but my gut feeling is that her own body did well to compensate. Her body (with semi-regular exercise and being overall healthy) was able to rebalance her spine to show better measurements. When I saw her latest xray, the thoracic spine was almost completely straight. I had to make sure they had the right image on the screen. I've seen quite a few xrays in my life, and although I'm not a medical professional, I believe I can see improvement over progression. Her curves are definitely improved on xray.

She is (and we are) happy for the improvement. I am happy we didn't have an aggressive surgeon who wanted to operate sooner than later. With her "significant rotation" some surgeons would have suggested surgery already just because of that rotation. Maybe yes, maybe no. So far, she's doing fine. She does have more chronic back pain than teens/young adults who have moderate scoliosis, but again, we (ortho, us parents, Kara herself) believe its from the rotation and imbalance of the muscle structure.

My best,

Meg's mom
06-23-2006, 04:09 PM
Thank you! Thank you! Just hearing that there is a possibility of her body actually improving gives me hope. I don't want to consider surgery until the last possible resort. Meagan has always been terrified of doctors and the idea of surgery makes her turn green. She is willing to wear the brace to avoid it but both DR.s say there is no point. I pray they are right. She is very active with dance and soccer and is solid muscle I hope that will help support her spine. This forum has been a blessing! Some responses are scary but your daughter seems so similar in degrees and body that I am so thankful that you are willing to share your experiences. :)
Meg's mom

LATigner
06-23-2006, 05:03 PM
If you more "insurance" against the curves getting bigger and maybe a better shot at stabilization, you might want to consider the SpineCor brace. There is a lot of information in the Bracing section of this forum on the Spinecor thread. There are several girls who are dancers and atheletes wearing it because it is flexible. My daughter is 16 and has curves in the mid 40's. The braces takes 10 degrees off the curves and is helping to stabilize it so hopefully it won't progress. If you want more info or to talk, send me a private message. It's a hard decision because there are no absolutes and everyone's curve progresses differently. The doctors can only tell you what "usually" happens and I know that was scary for us.

ProudParents
06-23-2006, 05:23 PM
Yes, everyone is different. At the time when our daughter's curves measured 43 MT and 35 L, we sought three opinions. She was 14 years 7 months old, had just started menstruating, and was measured at a risser 4. Two of the doctors predicted that the curve would not worsen very much and that she was finished growing and to come back in six months. The third doctor predicted that her curve would get much worse and that surgery should be sooner rather than later. All three of the doctors said that it was too late to brace because of the magnitude of the curve. By the time that our daughter had surgery six months later the curve had rapidly progressed to 63 MT and 32 L. We still wonder if we should have braced during those six months to possibly have saved one or two vertabrae from being fused.

Mark

Wakatie
07-09-2006, 03:33 AM
Hi there, I just wanted to include my experience, since it pertains to your question somewhat. I was found to have a 29 degree lumbar curve when I was 15 years old, and the specalists told me and my parents that it would probably not get worse and that I did not need surgery at that point. I was definitely finished my growth at that point, and a brace was not an option. Then, they said to x-ray every 12 months to check on it. I am now 20 and the curve is 55 degrees, and we have no idea why it got worse. I think it is rare, but for some reason it happened to me. I think the important thing is to repeat the x-rays on whatever intervals the doctors reccommend, so that if the curve is getting worse, you know about it. If they say a brace won't help, then they are probably right.

Kathryn

gardenjen
07-17-2006, 09:16 AM
Hi!
I'm a physical therapist and a mom with a 22 year old daughter who has scoliosis. I'd get another opinion. I'd see Dr. Randal Betz at Shriner's Children's Hospital in Phili. It would be worth the plane fare, I assure you. He does surgery when necessary, fusing as few spinal levels as possible, has some kids braced, and also does vertebral stapling to prevent the progression of curves. If you are assured by Dr. Betz that Meg does not require surgery, I would explore exercise options. My current persuasion would be to contact Beth Janssen at ScoliosisRehab in Stevens-Point, WI and consider intense exercise training to prevent the progression of her curves. At 22 with >45 degree curves, my daughter will be heading there in September.
Good luck to both of you!