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cello_mom
07-27-2012, 09:52 AM
We had DD13's 48 hours out of brace (TLSO) x ray yesterday. She has been wearing the brace 24-7 since February when she was at 30/30 S curve. In brace x ray showed complete correction of the lumbar curve (doc called it a compensatory curve) but only 20-25% correction of the thoracic curve.

6 months later, 48 hours out of brace, her thoracic has progressed to 36 degrees (she's been curving a degree a month all along the way of monitoring, and now bracing). Doc says it is very hard to control the "aggressive" upper curve with TLSO. I asked if we should consider a Milwaukee brace (after school, all night, weekends) as even the doc says "we don't do Milwaukee anymore" but would consider it and also sent us back to orthodist to see if we can get further adjustment (doc says he doesn't think the TLSO can be adjust any higher as it is already high under her arm). And curve is making one leg shorter than the other as her hips are shifting up on one side.

We also have a referral to the ortho surgeon at Childrens in Chicago (current doc doesn't do the scolio surgery anymore) and wants this other doc to also evaluate alternatives.

Someone tell me about Milwaukees? Do they really work? Are we at 36 now just blowing sunshine that bracing will help? Are we one the inevitable path to surgery?

DD is crushed. She hasn't had first period. She has years of growing still.

mariaf
07-27-2012, 10:09 AM
Hi Cello_Mom,

First of all Iím sorry to hear this news and know how difficult it must be for you and your daughter. I donít believe Milwaukee braces are used much anymore. For me personally, I donít think I could bring myself to make my child wear one, but thatís just me.

I have heard other parents say they were told the same thing Ė that it is very hard to treat a high thoracic curve. Once case in particular comes to mind. The co-founder of the VBS site, my friend Amanda, has a daughter who was 6 years old with a 42 degree high thoracic curve several years ago. She had begun wearing a Milwaukee brace which she (and mom) hated. Luckily, right around that time, Amanda heard of VBS which her daughter had performed in 2006-2007 I believe. For them it was preferable to wearing the brace for several more years, with almost certain fusion to follow from what they were told. (By the way, Amandaís daughter is around 11 now and her curve, last I heard, was around 25 degrees and she has been brace-free.)

Of course, this is just one childís story. However, I would suggest that you might want to look into VBS or perhaps tethering for your daughter. Even if you just do the research Ė it sounds like it could be a good fit for her. If the doctors feel that surgery (fusion) is likely in the cards for her in the future, then to me as a parent that makes the thought of surgery in the form of VBS/tethering a little easer to swallow 

If you are interested in learning more, I would welcome you to come check out the VBS site (see my signature). I would also suggest contacting Shriners Hospital n Philadelphia as they perform both VBS and tethering and would seem to offer the most options in your daughterís case. Contact info for them can also be found in my signature. Also, feel free to e-mail me if you prefer.

Best of luck and please keep us posted!

cello_mom
07-27-2012, 10:23 AM
Thanks!

I checked the link and it looks a lot like what he (the doc) was telling me about, but then I read further and it is not recommended for thoro-lumbar curves, which is what DD has

I am 100% with you on the Milwaukee brace. Let's face it, it's walking traction. I would never ever make her wear it outside the house. Ever. But then if she has to wear is 100% of the time to make it work, I don't think we'd consider it. My husband seems to believe that we should make her to avoid surgery but his own mother thinks that's insane! His mom said to me on the phone we don't want to trade off the scoliosis for wanting to die.

flerc
07-27-2012, 11:26 AM
Cello_mom, I believe you should to consider that probably, only a 20%-25% of reduction in the main curve might be not enough for any brace in the world (even Milwaukee). Mainly if not exercises or something else would be complementing the treatment. Probably you would be in a different scenario, achieving enough flexibility in order to get a natural reduction of around 50%.

I hope you may find the best.

cello_mom
07-27-2012, 12:03 PM
Flerc, the folks at ISICO (the group in Italy that does exercise treatment for scoliosis patients) told me that high curves were less amenable to exercise (or exercise plus brace, which they also offer). I just think there's something in having a curve in that area of the back that makes it more difficult for any conservative treatment to target.

I did have a similar thought, though, about the in-brace correction. Cellomom, did they say anything about the initial in-brace x-ray? I thought that, unless the in-brace correction was at least 50%, it was unlikely for the brace to stop progression.


Yes they did tell me they wanted to have at least 50% correction (lumbar correction was nearly 100% ie normal) and that curves that are higher are harder. But we thought if we could get any correction in brace it would not progress to the same extent it was unbraced. What really was the point of wearing it if it doesn't help (other than her back aches went away braced).

We are sooo frustrated because we just don't understand why this is happening to our beautiful daughter.

cello_mom
07-27-2012, 12:23 PM
I'm not sure if they think that less then 50% in-brace correction is at least partly effective, but it does seem like a lot to go through if it's not going to significantly slow the progression.

I agree. I tend to think the reluctance to use another type of brace is the reason. Even when we saw the Children's doc last October he did not mention anything other than TLSO. It was as if the Milwaukee was from the Dark Ages.

flerc
07-27-2012, 12:45 PM
Hdugger, it has sense what ISICO told you, but it has more sense if they are referring to strengthening exercise. I believe that stretching exercise may be very different even in such kind of curves. Certainly I believe that during growth strengthening exercises are so much important.. the exception may be Torso Rotation, I donít know.
About reduction.. I believe that nobody in the world may say that more reduction could be worse, but there are really many reasons about why should to be better, as a priori everything against the scoliosis vicious cycle . Of course it not guarantees anything, but anyway the more reasonable of course seems to be trying to achieve a high reduction.
Milwaukee seems to be the extreme brace in every sense. I think that principles behind braces seems to be exploited as in any other brace, but I (not sure at all) have heard also about some problems not existing with other braces.. of course it also seems to be extreme also in the bad side as discomfort is.

cello_mom
07-27-2012, 01:07 PM
Hdugger, it has sense what ISICO told you, but it has more sense if they are referring to strengthening exercise. I believe that stretching exercise may be very different even in such kind of curves. Certainly I believe that during growth strengthening exercises are so much important.. the exception may be Torso Rotation, I donít know.

We did ask about exercises etc etc early on but every doc we visited said really they won't help. We did PT for a while to help with pain but they didn't seem to make a difference in curves. I am not familiar with ISCIO at all.

It is water under the bridge now as here we are at 36 degrees.

flerc
07-27-2012, 04:01 PM
Doctors says you what the protocol says and it only says about braces or surgeries or meds.
I think you should to talk with Daci
http://www.scoliosis.org/forum/showthread.php?13632-Our-daughter-s-success-story!-46-Cobb-at-age-14-improved-1-3-2-years-later&p=141622#post141622

mariaf
07-27-2012, 04:14 PM
I checked the link and it looks a lot like what he (the doc) was telling me about, but then I read further and it is not recommended for thoro-lumbar curves, which is what DD has

My husband seems to believe that we should make her to avoid surgery but his own mother thinks that's insane! His mom said to me on the phone we don't want to trade off the scoliosis for wanting to die.

Hi again,

When you say "it" is not recommended for thoro-lumbar cuvers, what are you referring to (VBS, tethering)? Sorry, I just wasn't sure.

What your MIL said (quite colorfully) is true in a way. If the child is going to be miserable (and I am NOT saying that all braced kids are miserable), then you really have to weigh whether any treatment is worth it, especially since there are no guarantees with anything.

mariaf
07-27-2012, 04:21 PM
I don't think VBS has a very good success rate once the curve is over 35 degrees. It's mainly successful in younger children with smaller curves. Tethering is very experimental - I have no idea what the success rate is like.

While VBS can work well on 'some' kids with curves between 35-40 degrees (my son and Amanda's daughter are 2 examples - they started out at 40 and 42, respectively - and are both in the mid 20's several years later), the success rate skyrockets for curves under 35 degrees. For this reason, VBS is normally not performed on curves over 35 degrees much anymore (they don't want to do surgery unless there's an excellent chance of success), although there are exceptions - and 36 degrees is borderline, so I would not completely rule it out without a consult.

As for tethering, it is newer than VBS and only performed, to my knowledge, at Shriners in Philly and by Dr. Newton in CA, but the results so far have been extremely promising. I think if it would give my child a decent chance at avoiding fusion, I would probably at least consider it.

mariaf
07-27-2012, 04:23 PM
Once you have anything other then a garden variety single thoracic curve, it's hard to find a surgeon outside of Shriners who is likely to have seen enough of them to come up with a good treatment plan.

Very well said!

leahdragonfly
07-27-2012, 05:13 PM
Hi,

you and your daughter must be so disappointed with the recent x-rays...that is so unfair after wearing her brace so diligently!

I wanted to clarify the location of her curve, you mention a high thoracic, a lumbar (maybe compnesatory?), and also thoracolumbar. If her curve is a high thoracic (in one direction) and also lumbar (the other way), the thoracic can be tethered if she is a candidate, and staples (VBS) can be placed to the lumbar if required. This type of curve pattern is sometimes referred to as thoracolumbar since both are involved. A single "truly" thoracolumbar curve that can't be tethered currently is one where a single curve crosses the thoracolumbar junction to involve a portion of both the thoracic and lumbar. At least that is my understanding. But since you are talking about her curve being so high thoracic that's it's difficult to brace effectively, that would have to be a really long curve to also extend into the lumbar. All the bracing info I have read says that TLSO/underarm bracing will not work for curves with apex above T7 or 8 (I forget which).

Best of luck with getting the brace adjusted, and with your upcoming second opinion.

cello_mom
07-28-2012, 09:34 PM
Hi

This was what the radiologist wrote way back at our first x ray last April. So it looks like her thoracic was at T8.

FINDINGS: There is S shaped thoracolumbar scoliosis. The superior apex is right-sided at the level of T8, measured at 21 degrees. The inferior apex is left-sided at the level of L2-L3, measured at 22 degrees. Neither curve complete corrects with lateral bending. No segmentation or other congenital abnormalities are identified."