Son's posture

[laurieg6]

I posted this info into an adult thread but thought I'd put it here too.

My son has tilted since his surgery and it does worry me a lot. He holds himself with his right shoulder higher than his left and he bends his left knee, thereby leaning a little to his left side. He has been in physical therapy for it since late March and it is only helping a little. It does really help with his flexibility and strength though so we plug along at it twice a week for the most part.

He has finally started to become a little more self-aware of how he holds himself. He will now go and look at himself in the bathroom mirror and try to even out his shoulders if I ask him to do so. He has a checkup with the surgeon this Thursday (it's been 13 months since his surgery) and I wonder, as always, what, if anything the surgeon will say can be done about this posture issue. Alexander is doing great other than his posture though and I would hate (really!) for another surgery to be mentioned as a way to fix it.

If anyone has any comments about this or suggestions about fixing this problem, thank you in advance.

[emma12]

Hi,

Sorry to hear that Alex is still having some postural issues after surgery. My daughter also is having a "lean", as I have posted about in various places on the forum. She was sent to "postural training" with physical therapy, which seems to be helping somewhat, but, she still "leans" to the left. When she bends her right knee, her back appears straight. Her shoulders are even, it is her hips that appear uneven, her orthotist (she has for pronated feet) says she has an oblique hip, that would resolve with a lift in left shoe. Physical therapist and surgeon don't believe we should go that route at this time. I've tried to get her to do the "mirror thing", but, she tends to not think about it unless I am "nagging at her". She has no complaints, at all, with her appearance or with pain.

Her situation is a little different than Alex's, she was fused T2-T11 one year ago, with compensating lumbar curve left alone. It didn't correct itself as far as we had hoped, although it does not seem to be progressing (it is now 36ish, down from 53).

We've had 3 opinions now in the past 3 months, and all agree that she has a trunk shift of about 3.5 cm (which is causing the "lean", as I call it). The last 2 opinions say that she "looks" much better than her xrays would suggest. The first (very strong) opinion stated that aggressive surgery to L4 and thoracoplasty, asap, before she is done growing should be done or she will certainly have future problems in mid-life. Her own surgeon was not so opinionated, but said that she probably should be further fused to L2 or L3, but it could wait a year or two.

Our latest opinion, from doctor who also treats adult scoliosis patients (and followed our case when she was first diagnosed before we moved), said we should not have further fusion done at this time. He presented a very, very strong argument as to why long fusions would be more likely to have back problems later in life, said he has many adult patients who have xrays similar to hers with no problems or pain. He also ripped apart (putting it nicely!!), the suggestion that she have thoracoplasty. At this point, I was glad to hear the third opinion, as I don't want further surgery either, but am frankly confused as to why I've heard such differing opinions from two well respected surgeons. This last doctor suggested that if we keep seeking opinions, he guesses we'll hear 50/50 to have surgery or not, but recommended that we see doctors who also treat adult scoliosis, as he feels they would have better idea as to what effects further surgery would have in the future for her than would a pediatric orthopedic surgeon.

So, while I don't have many suggestions, I am hoping to hear of any posted here. Good luck to you and Alex!

[nate03]

Hi-
My son also developed a significant shift after his stapling surgery (VBS). He was put back into a boston brace. We were told that the shifting issue often responds very well to bracing - 80% success if I remember correctly (much better than the results usually achieved for treating curves). He has only been in the brace for about 6 weeks, but to my eye he looks much better. We go back Sept. 7th for x-rays and I am definitely optimistic.

I am sure the last thing your child wants to do is wear a brace again, but we were told it would be a short term treatment (2 - 6 months).

-Cara

[laurieg6]

Thanks for responding Cara and Emma12. I hope that Nate gets really positive feedback during his appointment in Sept. I'll be waiting to hear about it. I'd read about him through various links and was very hopeful that the stapling would be the answer to his curvature.

I am also sorry to hear about Emma's leaning issue. With her lumbar curve relatively small (?) now, maybe it will continue to decrease or at least stay the same. I hope she can just "wait and see" about future surgery? Our surgeon does both pediatric and adult spinal surgeries. He only deals with spines so I was hoping, like you are with your last opinion, that he knows the effects of longer fusions in childhood on adults. He really seemed confident that fusing to L3 was enough for my son, although the pediatric specialist we saw suggested that if we didn't go to L4, another curvature would develop. But so far, the xrays don't show additional curves but Alexander's posture still needs improvement. Like Emma, he has no complaints about his appearance or any pain. It's like the surgery never happened but he doesn't need the brace anymore (so far).

I will continue to update, esp. after his appt. on Thursday with our surgeon. Thanks in advance for any additional input anyone has about their posture or their children's posture after surgery.

[BETall]

Hi,

Sorry to hear that Alex is still having some postural issues after surgery. My daughter also is having a "lean", as I have posted about in various places on the forum. She was sent to "postural training" with physical therapy, which seems to be helping somewhat, but, she still "leans" to the left. When she bends her right knee, her back appears straight. Her shoulders are even, it is her hips that appear uneven, her orthotist (she has for pronated feet) says she has an oblique hip, that would resolve with a lift in left shoe. Physical therapist and surgeon don't believe we should go that route at this time. I've tried to get her to do the "mirror thing", but, she tends to not think about it unless I am "nagging at her". She has no complaints, at all, with her appearance or with pain.

Her situation is a little different than Alex's, she was fused T2-T11 one year ago, with compensating lumbar curve left alone. It didn't correct itself as far as we had hoped, although it does not seem to be progressing (it is now 36ish, down from 53).

We've had 3 opinions now in the past 3 months, and all agree that she has a trunk shift of about 3.5 cm (which is causing the "lean", as I call it). The last 2 opinions say that she "looks" much better than her xrays would suggest. The first (very strong) opinion stated that aggressive surgery to L4 and thoracoplasty, asap, before she is done growing should be done or she will certainly have future problems in mid-life. Her own surgeon was not so opinionated, but said that she probably should be further fused to L2 or L3, but it could wait a year or two.

Our latest opinion, from doctor who also treats adult scoliosis patients (and followed our case when she was first diagnosed before we moved), said we should not have further fusion done at this time. He presented a very, very strong argument as to why long fusions would be more likely to have back problems later in life, said he has many adult patients who have xrays similar to hers with no problems or pain. He also ripped apart (putting it nicely!!), the suggestion that she have thoracoplasty. At this point, I was glad to hear the third opinion, as I don't want further surgery either, but am frankly confused as to why I've heard such differing opinions from two well respected surgeons. This last doctor suggested that if we keep seeking opinions, he guesses we'll hear 50/50 to have surgery or not, but recommended that we see doctors who also treat adult scoliosis, as he feels they would have better idea as to what effects further surgery would have in the future for her than would a pediatric orthopedic surgeon.

So, while I don't have many suggestions, I am hoping to hear of any posted here. Good luck to you and Alex!
Please visit _ www,scoliosisjournal.com/content/content/3/1/9

[laurieg6]

I could not find the article when I went to the link you gave, BET all.

[laurieg6]

I thought I'd post an update about Alexander's one year follow-up appt. with the surgeon. Apparently, from a surgical perspective, Alexander is doing really great. The surgeon says he's growing well into the fusion, is both coronally and sagitally well-balanced (I think that means both side to side and front to back) and they couldn't have hoped for better.

The surgeon said that Alexander just has to increase his awareness of his posture and try harder to stand up straighter. I felt better but also frustrated hearing this because I am tired of being such a nag but I just can't stand seeing him tilted and slouching. He looks so great when he stands up straight but does not do so on his own for the most part.

We will continue with physical therapy and hope that it will help... Does anyone have any other, non-surgical treatment ideas? We did craniosacral massage, hellerwork, chiropractic and acupuncture prior to the surgery but I'm not sure what to continue with now and some of our practitioners seem to be unavailable for various reasons now. I would really appreciate hearing what might work from any of you.

Thanks,

[Susie*Bee]

Laurie-- that is great news that you got such a good report from his surgeon! I'm sorry you have such a challenge/struggle with the posture thing. It made me remember back to when my own mother, eons ago, used to try to get my brother to not slouch. Sometimes about that age, other things come into play (inhibitions, etc.) that make kids want to slouch... like not wanting to be noticed, feeling they're too tall, etc. I used to round my shoulders some because I didn't want my boobs to stick out very much... :rolleyes: Adolescence is such a difficult time!!! :eek: Anyway, I think sometimes posture problems go with the territory of being that age, but maybe his is just related to his scoli, the surgery, and what "feels right" to him. If so, is there an incentive you can dangle that would cause him to WANT to try harder? That's probably my only suggestion. I do wish you luck with this. And mostly wanted to say "YAY!" about his good report from the doctor. :)

[nate03]

Hi Laurie-
I hope this comes across in the way I mean it - not critical at all of anyone - just my thoughts/trying to understand.................

I really hate when doctors blame problems on the patient, and I really feel that he should be helping you more with finding a solution (besides having to nag). Medically speaking - is his posture a problem (will it affect his fusion, cause any problems) If you didn't bring it up - would the doctor be concerned?
When you look at his x-ray, is there a visible shift? With Nate there is - if a straight line is drawn up from the center of his spine, it goes to the right shoulderblade, & thru his eye. If the posture is really a worry would some sort of brace (like a post-op protective brace not tlso) help him remember to stay straighter. Maybe it is just going to take time for his muscles to grow & fill in evenly around his new straighter spine?

We tried Physical Therapy for a few months & during this time Nate's shift actually got worse - not saying it made it worse - who knows?!? But the drs did have us stop the PT. Nate liked going & he asks to go back - but we are taking a break for a bit to see what happens.

I know this doesn't probably help you too much - but I just wanted to reach out & try to help brainstorm a bit.............I understand what you are going through.
-Cara

[emma12]

Laurie,

That is great news! I know how you feel about the nagging--when I see my daughter sitting all slumped over, I can't help but think that she is just reinforcing the muscles to stay that way.

Her surgeon did suggest trying a brace again, but, as she did not have much compliance before, I kind of doubt that she will wear it now, so, I've been trying to find some alternate method. He also didn't hold much hope that this would help, and neither did the other two opinions we've had.

The way cara describes the straightline is exactly how my daughter's xray appears, the line from the center of vertabrae in pelvis would go through her eye.

As for the article from betall, the link didn't work for me, either. But, did you mean the article about the sensor shirt that alarms if the wearer is leaning or going off of center? It is kind of an interesting concept, but, where would you get one of these? It would seem that wearing one of these for even just a short period may "retrain" the child into realizing when they are leaning on their own. I will ask her doctor if he has ever heard of these.

This is a trying age, when these kids just want to fit in, and certainly not be different or stand out from everyone else. And, also probably a little bit of "rebellion" against what their parents want them to do??? I know I'm getting little bits of that---

Glad to hear that you got such a good report!

[trulyaries]

I really hate when doctors blame problems on the patient, and I really feel that he should be helping you more with finding a solution (besides having to nag).

Cara hit the nail on the head for me. I'm far from young, but I am facing the same issue of bending forward. My surgeon looks at the xray and says everything looks fine. And I want to scream and say, "don't look at the xray, look at ME!" I haven't posted in awhile because I was embarrassed to admit that I'm still not "fixed" after my last two surgeries were done in part to correct the bending. The wonderfully good news is that I am no longer in pain per se, but I suffer constantly with the strain of trying to hold myself upright. And I'm tired of family and friends always telling me to stand up straight. I'm trying to - all the time!! My surgeon just released me for physical therapy. Until now he only wanted me to walk - the one thing I couldn't do for any length of time without bending over! I'm two weeks into PT (which by the way uses Pilates exercises) and praying that it works, because I can't bear the thought of another surgery.

I just wanted to point out that perhaps the kids have the same problem - holding yourself upright constantly is a strain and it's easy to forget or to give in and bend over or tilt.

I don't want to hijack this thread but wanted to comment, so if you want to reply to me personally send me a private message.

[smileyskl]

Hi Laurie,

That is good news that you son doesn't have to have more surgery. :D I don't know from experience but I would think a brace would be the best solution. Not necessarity a hard, confining brace but just a regular back brace that would serve as a reminder to stand straight. I think even wearing one part of the day would work. I know how much my daughter hates her brace now and after her surgery, I am sure she will not want to ever wear one again but as you know slouching all the time (whether you have scoliosis or not) will make your back hurt so its not just about your image. I would tell him that and remember to say how great he looks when he is straight. Also, it may help if someone else (like the doctor, good friend, etc.) mentioned this to him. I do believe sometimes kids do get tired of our "nagging" and tune us out instead of "really" listening. Just a thought. :) Good Luck.

Smileyskl

[mariaf]

I do believe sometimes kids do get tired of our "nagging" and tune us out instead of "really" listening.

Ain't that the truth - LOL!!!

[BETall]

I could not find the article when I went to the link you gave, BET all.
I am sorry. Please try again:-www.scoliosisjournal.com/content/3/1/9

[Shelgrl66]

I posted this info into an adult thread but thought I'd put it here too.

My son has tilted since his surgery and it does worry me a lot. He holds himself with his right shoulder higher than his left and he bends his left knee, thereby leaning a little to his left side. He has been in physical therapy for it since late March and it is only helping a little. It does really help with his flexibility and strength though so we plug along at it twice a week for the most part.

He has finally started to become a little more self-aware of how he holds himself. He will now go and look at himself in the bathroom mirror and try to even out his shoulders if I ask him to do so. He has a checkup with the surgeon this Thursday (it's been 13 months since his surgery) and I wonder, as always, what, if anything the surgeon will say can be done about this posture issue. Alexander is doing great other than his posture though and I would hate (really!) for another surgery to be mentioned as a way to fix it.

If anyone has any comments about this or suggestions about fixing this problem, thank you in advance.


I had this same problem when I had my posterior-only surgeries. For me it continued to worsen, so much so to the point that I went from 5'9" down to
5'2" and it had fused in this manner. The only way I could stand was to bend one leg and over time that dwindled down to MAYBE 5 minutes at a time. I was bent over forward and tilted over to one side more than the other as well. Once I had another reconstructive surgery w/further extension, as well as an anterior surgery, this problem went away. I needed the stablization in the front as well with cages in the entire lumbar region. There was NO WAY before this that I could have POSSIBLY stood straight, whether there would have been physical therapy or not, it was NOT happening. It was as if you had tried to bend a bone in the opposite direction that was not meant to bend that way, NOR was it going in that direction. My doctor tried to pass it off until eventually he admitted I needed another surgery. Hopefully this will not be the case for your son. I wish your son all the best.

[CurvySAT05]

Laurie and Emma,
Have your children been measured for a possible leg length discrepancy? (LLD) The reason I ask this (Emma's post especially) is that I had a LLD that went unnoticed until I was fused to L5 when one of my Physical Therapists was grasping at straws to figure out what was wrong with my gait. She then realized my legs didn't look quite right.
After a revision surgery in December that went down to my sacrum, it is HIGHLY noticeable now to the point where without a built on shoe lift I walk "long leg, short leg, long leg, short leg" I call it my waddle.
Without my shoe lift for the shorter leg, I stand leaned over towards the shorter side, and when standing I typically bend the longer leg so that my pelvis is even. When I put my shoes on (with the lift on the left shoe) my shoulders are even and so is my pelvis.
When I was at the Orthopedist's office one day he measured me for a lift by putting wood blocks under the shorter leg, and when I got to 3/4" I was finally even...something I've been waiting for for a LONG time.
Hope you both are able to get your children "straight", even if it just takes a little time.

[emma12]

Yes, my daughter has had several of her doctors looking at leg length discrepancies, and they all agree that she does not have that. It seems like she does because of the way she appears when she bends her right knee (she straightens right out), or wears only one shoe. On xray, you can see that it is actually her hip that is off (one called it an oblique hip), and when they do all of the measurements... for her legs, it's clear that it is not a true leg length discrepancy, although it does act somewhat like that. None of this was an issue prior to her fusion surgery, and I'm not quite sure that I understand why it has occurred now.

The orthotist that made her shoe arches (she also suffers from pronated ankles) wanted to put a 3/4" lift in one shoe because he thinks that would even her out (it certainly makes her look even), but the physical therapist and doctor don't want to go that route at this time. We've still had ongoing discussions about this though, one pt suggested trying the lift temporarily to see if that didn't strengthen the muscles on one side. For now, we're holding off on this though, her pt is working specifically on strengthening hip exercises. Not seeing a whole lot of result at this point, although it is a struggle to get my daughter to do her exercises daily--but, she is staying flexible, and getting alittle more motion to her hips than she had when we started.

Thanks for the suggestion!

[nate03]

Laurie,

But, did you mean the article about the sensor shirt that alarms if the wearer is leaning or going off of center? It is kind of an interesting concept, but, where would you get one of these? It would seem that wearing one of these for even just a short period may "retrain" the child into realizing when they are leaning on their own. I will ask her doctor if he has ever heard of these.



Hi- I just came across a study about this - it doesn't sound like it is available yet, but just thought I would pass it along:

http://www.scoliosisjournal.com/content/3/1/7/abstract

[laurieg6]

Hi Everyone,
I haven't been on here for a week or so and I want to thank everyone who responded for your positive and helpful advice. Getting Alexander a brace seems like an interesting idea in some ways but he is adamantly opposed to it (when I mentioned it, he almost freaked out) and I can't see trying to find someone to prescribe one now since his surgeon doesn't seem to think it's necessary. He is so happy to be out of the brace for now.

Regarding leg length discrepancy, if Alexander does have this, the surgeon and the physical therapist both said it would be minimal, and they both believe that the x-rays involved in finding out for sure are too much for him, given his ongoing x-rays since the age of 5 or so for the scoliosis.

If Alexander actually thinks about standing up straight, he really can do it so I'm hoping that as he continues to mature, he'll start to get feedback from other kids (only kind comments :) ) or start remembering to stand straighter himself.

The article I had tried to read from BETall was not about the sensor shirt. When I tried again to read the linked article, it was a really grotesque article about all the failures of spinal fusion surgery and all it's complications. It was really nasty and unnecessary for me to read (I only read a little). I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

[txmarinemom]

The article I had tried to read from BETall was not about the sensor shirt. When I tried again to read the linked article, it was a really grotesque article about all the failures of spinal fusion surgery and all it's complications. It was really nasty and unnecessary for me to read (I only read a little). I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

Go figure. She posts Schroth as a cure for everything, and that's ALL she posts.

EVER.

I hate she pointed you to something like that, and you might might to email the President here (jpobrien@scoliosis.org) to ask why they have advertised her (Beatriz Torres ... a Schroth practitioner) on the NSF home page.

There are enough quacks and scare tactics around. This venue should be somewhat immune (at least to *condoned* quacks). I have never seen her post anything helpful, and that wasn't an attempt to drive business her way.

[nate03]

I thought it was really mean and cruel of someone (BETall) to put in a link to an article like that in a place where parents and patients go to find support about the surgery. Most people who would read in the surgery section are either imminently facing the surgery for their kids or the kids have already had the surgery. We parents often have enough anxiety about the surgery and many of us have tried alternatives to it and we don't need to read such a negative article when the surgery is really our only option for helping our kids have a relatively "normal" life (whatever that is).

I wish the article I read was really about the sensor shirt and I will find that one next.

Hi Laurie-
I completely agree with your sentiments about BETall. Just FYI, I reported both of the posts in this thread and also sent an email to Joe O'Brien on 8/20. Joe never replied to me or removed the posts - very frustrating.

I hope you saw the link I posted above about the shirts. And, I completely understand your son's feelings about the brace ~ I am glad the drs do not think it is necessary.

Take care,
Cara

[mariaf]

I hate she pointed you to something like that, and you might might to email the President here (jpobrien@scoliosis.org) to ask why they have advertised her (Beatriz Torres ... a Schroth practitioner) on the NSF home page.

Pam,

It is VERY interesting that the President of NSF in a recent e-mail wrote (with regard to MY posts on vertebral body stapling or VBS) that "there was concern in the past that some of those posts had been more recruiting/advertising in nature than they were educational".

Doesn't "advertising" usually infer that someone is profiting? I don't make a penny from my posts - on the other hand, BETAll is obviously attempting to profit - and in a very distasteful manner I might add.

Yet despite all of the above, BETAll, as you say, DOES have her contact information appearing on the NSF home page. As you know, when we requested that a link be added on the home page to www.vertebralstapling.com, we were first told by the President that an endorsement would be necessary from the doctor(s) who perform VBS before such link could be added. This endorsement was subsequently obtained. However, there is still no link to the VBS site on the NSF home page.

In light of all this, and other events that I won't go into here and now, it is difficult not to feel that certain treatment methods are given preference here.