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View Full Version : Curve now at 28 and 41



cello_mom
12-10-2012, 10:50 PM
Like a clock, we progress each month one degree in the thoracic curve (41). The lumbar curve (28) is compensatory. Overall she is balanced, and minimal rotation, and actually prefers wearing the brace to not (much more discomfort out of brace). DD is 13.5 and still no menses and still growing a lot. We go back in six months for another X-ray check in. Nothing more we can do it seems. X rays are below.

Pooka1
12-11-2012, 06:21 AM
Nothing more we can do it seems.

How about tethering? You are in range.

cello_mom
12-11-2012, 08:06 AM
How about tethering? You are in range.

There has been no mention of tethering. Both the check up doc and dr. Grey hack at Lurie's/Children's Memorial don't want to do any surgery until she hits 50. I have a feeling she will hit 50.

leahdragonfly
12-11-2012, 08:42 AM
Sorry to hear of her continued progression. Does she understand she really doesn't need the brace at this point? I could be wrong, but it seems like she would benefit most from allowing all her trunk muscles to regain normal strength by DC'ing the brace wear, since it clearly isn't helping now. It would be normal for her trunk muscles to be sore and achy for a week or two upon quitting the brace, due to muscle fatigue, but beyond that she would probably feel better without it.

Curious if her doc told her she didn't need the brace anymore.

Shriner's Philadelphia would be your best source of info about possible tethering, a fusionless alternative to fusion in the growing child with larger curves. You could e-mail the spine team PA, Janet Cerrone, at janetcerrone@comcast.net even if you just wanted to ask about tethering. She is incredibly nice and will respond within a few days usually.

Take care, and good luck,

leahdragonfly
12-11-2012, 08:43 AM
Sorry to hear of her continued progression. Does she understand she really doesn't need the brace at this point? I could be wrong, but it seems like she would benefit most from allowing all her trunk muscles to regain normal strength by DC'ing the brace wear, since it clearly isn't helping now. It would be normal for her trunk muscles to be sore and achy for a week or two upon quitting the brace, due to muscle fatigue, but beyond that she would probably feel better without it.

Curious if her doc told her she didn't need the brace anymore.

Shriner's Philadelphia would be your best source of info about possible tethering, a fusionless alternative to fusion in the growing child with larger curves. You could e-mail the spine team PA, Janet Cerrone, at janetcerrone@comcast.net even if you just wanted to ask about tethering. She is incredibly nice and will respond within a few days usually.

Take care, and good luck,

cello_mom
12-11-2012, 10:58 AM
Both the doctors want her to continue wearing the brace. One, she is in much more pain without it. She has back spasms. We tried PT before she was braced to solve that and nothing helped as much as the brace. She's also completely compliant and doesn't complain, gets along fine in school, has clothes that look good etc. So if she is pain free we are happy. Secondly both doctors feel her curve would actually be progressing faster unbraced, considering she's grown almost 4-5 inches since last May when diagnosed. He thought she might be curving two to five inches a month without it. Her Risser is 2-3. He said about fifty percent complete (on her iliac crest).

We haven't talked to shriners since we have a long experience with the Children's Memorial network. Something to consider.

LindaRacine
12-11-2012, 11:55 AM
Gayle...

I think most docs prefer to keep patients in brace until they get their period.

--Linda

Pooka1
12-11-2012, 01:08 PM
Gayle...

I think most docs prefer to keep patients in brace until they get their period.

--Linda

Yes but 41* (and moving) is not within the bracing protocol of 25* - 40*. Based on my experience with my two daughters, I think there is some link in some surgeon's minds with how fast a curve is moving and how likely a brace is to hold it. My one daughter was spared bracing for some reason and I think it was this but I don't know that. The other had a curve that moved up to 3-4* per month IN BRACE. I suspect she should not have been braced and should have been fused earlier especially given her identical twin's curve moved 5* a month for the entire observation periods of several months.

There is no case I am aware of where a brace stopped a fast-moving curve... the cases claimed on this group have ambiguous measurements from non-orthopedic surgeons as the "starting point" and seem wrong. This doesn't stop the lay parents from claiming it, though. We have one case where a parent claimed the curve moved about 15* in a few weeks if I remember correctly. Obviously, this is much more likely to be an error in the intial measurement by a non-spcialist. There is no case where an experienced pediatric orthopedic surgeon who knows spine documented a curve was moving quickly and then the brace stopped it. And even if that documentation was available, these were smaller curves and you can't rule out it stopped on its own. My one daughter's curve stopped and started both in brace and out of brace on its merry way up to 57*.

cello_mom
12-11-2012, 01:24 PM
I am glad though she is really *OK* with the brace. She is not in pain anymore. She leads a normal life. And I get that this whole bracing thing is controversial, but it's where we are.

I made this for family and thought I would share. It shows the progression at first x ray (age 12) to yesterday after 11 months of bracing.

1405

jrnyc
12-11-2012, 06:09 PM
note...Linda, your private message box is full...

jess

3sisters
12-12-2012, 10:26 AM
There has been no mention of tethering. Both the check up doc and dr. Grey hack at Lurie's/Children's Memorial don't want to do any surgery until she hits 50. I have a feeling she will hit 50.

I am sorry that she is progressing so quickly even in brace. Have you heard of the tethering surgery? Although you are fortunate to have doctors you are comfortable with, the tethering is a surgical option that they probably don't offer, which involves non-fusion in this type of progressive, immature, patient. There is no need to wait until you hit a 50 degree point, if you and your doctors expect that to happen. In fact, the tether needs to be done while there is still growth remaining. I know that it is offered at Philly Shriner's as well as Rady San Diego. These are the only two places offering it, as far as I know.

Of course it is important to be comfortable with your plan and expectations; wishing you the best of luck.

susancook
12-12-2012, 04:00 PM
Just want to say hi and to tell you that you sound like an awesome advocate for your child, the job t hat we never wish for, but that's what we are given.

I just read the blog for a young women called Braceyourself, named Katie. She is an awesome writer and your daughter might enjoy her blog.

Best of luck! Susan