Can you see progression?

[mmm2001]

Hi-
My 7yo dd has jis. Curve initially was only 11, then 15, 19 and at last visit 23. It is right thoracic. Those films were all about 4 mos apart. Anyway, next appt is in 2mos (which will be about 6mos from the last one.) I have been fairly calm but now am getting paranoid again and keep looking at her back. It looks good to me, but then it always seems to look the same to me

My question is this-to anyone who has had a child progress- have you been able to see the progression just by watching, or have you thought things were fine only to find that the x- ray showed progression? Just trying to buy myself a little sanity as this appt draws near... Any thoughts would be appreciated!

Lisa

[mamandcrm]

Hi Lisa,

I think you really can't eyeball small progressions accurately. I know I've read posts from folks on here who were SURE their kids had progressed only to find at the next x-ray that they hadn't. But the days/weeks leading up to x-rays can be nailbiting, I know. We've got our next one coming up in 3 weeks and I'm already thinking about it. If it looks good to you, then think it's good. For me, I try not to look at my daughter's back too much, partly so as to not drive myself crazy, and partly so as to not broadcast my concern about it to her. She doesn't worry about it and I don't want her to.

Hang in there and you'll have your answer soon. I hope it's good news for you!

[mamandcrm]

And I suppose I should answer your question--did I see my daughter progress? No, but I didn't look for it.

[christine2]

We have a re check coming next week. I start sweating about 3 weeks ahead of time. I have in the past thought I have seen progression but it turns out to be fine. Infact the other night I was looking and thought I saw her curve again only to have her bend again and now I am not sure. The doctor really loosened her brace last time so we did not over correct and that makes me nervous. My daughter is getting a new brace this visit, we are looking forward to a nice, new CLEAN brace.

[concerned dad]

Lisa,
From your last post I know you are a doctor. I am guessing we will all be interested to see what you ultimately decide to do, be it VBS, Spinecor, TSLO, or watch and wait (or, <gulp>, some kind of excercise based program).
I think it would be really hard to eyeball a 4 degree change in curve. Perhaps if you had a series of photographs taken during a forward bending test you might be able to discern the gradual progressive change your daughter is experiencing. But as a parent, I would have to think that fears and imaginings would overpower any real ability to see it one way or the other.
I thought you might be interested in the attached figure from Sanders 2007 in JBJS. It shows the curve history of 24 girls. A bit tough to read, and I dont know the Lenke classification of a right thoracic. Basically it shows that some increase to surgical levels, and some dont, which I am sure you already know - it's just nice to see some real data.

[mmm2001]

Thanks everyone.

I know that I need to stop looking at it because I will most likely give her a complex...

This appt worries me more because if it is above 25 degrees I will feel compelled to do something. I'm on ortho #3 who will brace, or do VBS. I am very much in support of all of the parents and kids that are currently bracing. I just cannot wrap myself around placing her in a hard orthotic 23 hours a day for 8-9 years, as was suggested by ortho #2. I have read a myriad of studies on bracing, all of them fairly flawed, but I think that it probably does work, especially in small curves. This sounds terrible, but I'm not sure it's worth it even if it does work. That's my opinion as a Mom, of course, not as a doc.

In medicine there is not a lot of thinking outside of the box. Most doctors do what they believe is right, but there is an intrinsic bias that is based on training and not necessarily supported by fact. Our ortho #2 that wanted to brace at 19 degrees (due to a >5 degree progression), was a nice guy, and a good surgeon by reputation, but didn't seem to understand why I thought 9 years in a TLSO was extreme.

Oh well, thanks for letting me vent!

Lisa

[mamandcrm]

Hi Lisa,

I know it's hard. You are right at the point where the next news you get may be the news you've been hoping you never get. But then again, maybe she won't have progressed. Have any of your orthos suggested having her wear a night-time brace? We are not exactly the poster family for that as it completely didn't work for our daugther but I think it does work for a good deal of kids and she never had any problem with it, either physically or emotionally. It's what we hope to get back to at this point. VBS seems like a good option for you too, given your daughter's age and small curve. We actually have her on the schedule for it this summer, and plan to go forward with it if we do not get any encouraging news at the next x-ray visit. At best, that probably will still leave her with a night-time brace but we'll take it!

Good luck with your decision-making.

Chris

[Snoopy]

I think it would be really hard to eyeball a 4 degree change in curve.

I have to disagree. There were times I could see change in my daughter's back and x-ray always confirmed what I already knew. This was especially true when we were dealing with her junctional Kyphosis.

Mary Lou

[scoliboymom]

I have to agree with Mary Lou. I was always able to see my son's progression although his progression was usually about 10+ degrees. So if it were just a small increase maybe not so obvious. It was probably more the rib humps that became noticably bigger. And the formation of a lower rib hump

[mmm2001]

Well, for anyone out there with a morbid curiousity--- curve was stable, same as last time (23-24). So...either you really can see progression and my assessment is accurate, or you can't see a small progression anyway and I just got lucky. Personally, just relieved to have dodged the bullet this time. Plan is to completely avoid looking at her back for the next 6 months.

[mariaf]

Great news!! Stable is always good news as far as I'm concerned.

As I was reading this thread from the beginning, I was able to relate to everything that was posted - the knot in the stomach a few weeks before an x-ray or checkup (a friend of mine even has a name for it - the "dreaded x-ray day feeling"), wanting to look at my son's back but stopping myself so as (a) not to drive myself insane; and (b) not to make him self-conscious or worried; the feeling when everything is stable that I can breathe for another 4-6 months, etc.

At least we can all understand what each other goes through.

Again, I'm VERY happy for you.

[leahdragonfly]

Hi mmm2001,

I am glad you got news today that your dd's curve is stable, stable is good! We are in a similar position to yours although my dd's curve has never shown any true progression. I hate having to live from appt to appt, I wish I had the crystal ball to see the final outcome, but I can't seem to find it...

Thanks for sharing your news,

[Pooka1]

I have trouble eyeballing progression as opposed to rotation.

My formerly braced daughter's curve defies prediction by me because there is almost no rotation. It's a matter of is her torso touching one arm more than the other MORESO than a few months ago. I can't eyeball that.

With my fused daughter, she was twisting up like a pretzel. People who had no clue about what scoliosis is saw it.

[S4Sarah]

Hi I hope DD is doing well

My curves were originally barely anything, my doctor let me decide whether I wanted a brace or not, I said no. I went to another doctor alter on (a child specialist) and she said I was fine. Then I was recentley at my family doctor and she felt my back and wanted me to go abck and get another X-ray. Over that time they thought I would be fine I actually got worse. I have a mid-thoratic curve and a Lumbar curve. I ahve heard Thoratic curves progress faster than Lumbar curves. I would suggest maybe looking into one of the newer braces like TriaC, Spinecor or maybe even the Charleston bending brace. Talk to her doctor about it she is 7 and has much more time for it to progress. I'm done growing and don't have to worry as much.

Good luck to you and DD, everything should be fine there are so many fantastic treatments out there. It is good you found it her curve now, the earlier the better.
Good Luck I'll be thinking about you two. Let us know how everything works out.

[S4Sarah]

Oh I forgot to include a lot of times you can feel it. I agree with Mary Lou a 4 degree difference or any small increase like that can be noticed. You can't always tell by just looking at the person, but the person with the curve can feel it. Like when my curves got worse I knew it, I could feel it when I run my fingers down my spine and even just the feel of my spine like you can feel the pressure the curves put on you sometimes. But I can also see where Concerned Dad is coming from as a parent just looking at your child it is harder to tell and sometimes you can't tell by just looking at them.

[Snoopy]

Plan is to completely avoid looking at her back for the next 6 months.

Good luck with that! :D It's been 4 1/2 years since Jamie's surgery, and I can honestly say I don't look at her back anymore looking for progression. However, I still get that "dreaded x-ray day feeling" whenever we get close to a follow-up appointment.

Although we've put Scoliosis behind us, there are times it just creeps back into our lives unannounced. Jamie needed the straps of her graduation dress shorten the other day and the friend doing the adjustments freaked me out! She announced that she had shortened both straps the same amount, but yet the one strap was obviously still falling off her shoulder. I felt this sinking feeling of panic in the pit of my stomach. I tried to keep my voice calm and reassuring because Jamie's face showed concern and said, "are you sure, because her shoulders were so even after surgery?" She looked at the straps again and said that yes she made a mistake, one of them wasn't shortened as much as the other. UGH! Now I'm really trying not to freak out until Jamie's next x-ray in a few weeks.

Does it ever end?

Mary Lou

[mmm2001]

Thank you guys- I appreciate the support.

I agree with you Sharon- my daughter also (thankfully) has very little rotation. Barely a rib hump. So I think that progression becomes much harder to clinically monitor. However, prognostically that is good, so I am definately not complaining. Her RVAD has also appeared not to progress, which I understand is less predictive in JIS, but still a positive from what I have read in the EXTREMELY limited literature on JIS.

[abbysmom]

First of all, congratulations on good news! I just wanted to weigh in on the "very little rotation" thing: my daughter progressed from 14 up to 22 from ages 5 to 7. We were going every 6 mos. and had been told bracing was imminent. I was SURE that I saw progression before both of her last two appointments, and (happily) she actually regressed both times. I, too, was trying to tell if one arm was touching her hip but the other wasn't. I sew and had the same experience with the straps on a jumper I was making for her. I think that part of the trouble is that we parents are always trying to assess on the sly, and that is probably not very effective. Believe me, I know that it is easier said than done, but you do have to try and put the waiting game out of your mind and live in the now. I think I had a good 18 months of depression, really (which I had never experienced before) trying to deal with Abby's diagnosis. I think I was probably not the mom she was used to, (no matter how hard I tried) until I forced myself to wait for the next xray. I hope your daughter's curve stays stable. Try to enjoy her more and worry about her less;)

[mmm2001]

Hi-
Just thought I would update. One year later, curve is still low 20s. (21 at last visit.) We never did brace, even though we were told to by our ortho 2.5 years ago to do a Boston 23hrs/day, 7 days a week. I am NOT telling people to be noncompliant, or saying there is anything wrong with bracing. I am just saying, get a second opinion by someone who is experienced in scoli. Our current surgeon is very experienced. He told me he thought, just looking at her rotation, that she would be OK watching for now, and he was right. If we had braced her for the last 2 years, we would have thought it was working, when in reality it just wasn't going to get worse. It bounces back and forth between 18 and 25, all within the error range.

Best wishes to everyone dealing with this. It can be tough. Again, this is not a commentary on bracing, just an update on our experience.

L

[michael1960]

L

Congratulations. Your post raises that big question for all of us whether to brace or not.

My daughter was 7 with a 23 deg curve. It was suggested that she not brace. Then 4 months later it was 23 and suggested again that she not brace. Then 4 months later it was 36.

So, here is a case in which we wish our ortho would have suggested bracing when she was at 23. She was 36 last October (2009). And through bracing and some other treatment we are trying our best to get it back down. She has been in a SpineCor brace since October 2009. And is wearing the SpineCor and Boston brace since March 2010. The 36 deg curve (T4-T12) is down to about 23 deg but she still has a T5-T10 curve of about 28-30 deg.

Unfortunately all we can conclude is that some children progress and some do not progress. It is a very hard decision to brace or not brace. You may had done years of bracing only to find out it was not necessary while in our case it may have prevented curve progression.

Of course there is always the possibility that a 20 deg curve could be reduced to 0 deg +/- 5 or 10 deg through bracing. Especially at such a young age. Another question on the table whether a 15-20 deg curve should be braced for stabilization or maybe even curve reduction.

Fortunately we are seeing with some JIS children some curve regression. My ortho told us that bracing only stabilized a curve, but did not reduce it. This may be true for AIS but not so sure for JIS. There are several cases of children being in the mid 30s reduced to low teens through bracing. This is what we are hoping for at this time.

But it still raises the issue, so what if we get it down to 10-15 deg, do we have to continue bracing for another 6-8 years to hold it. That is a long time. I think some who have reduced the curve to 10-15 deg are trying the no-bracing or night-time bracing at this point to see if that is enough to hold it. And if it continues to progress go back to full-time bracing or maybe at that point make the decision to have something like VBS.

I am sitting here today wondering whether we should continue bracing and try to get to 10-15 deg or less or just have VBS and hopefully no more bracing.

Thanks for sharing. I started to read the post not realizing it was in the past and then said I sure wish I had an update, and there it was. Thanks

Michael

[mmm2001]

Thanks Michael,
That fear of a sudden and unexpected progression is always in the back of my mind. I wish there were some factor that we could use reliably to predict who would progress and who wouldn't. I still worry about her reaching the adolescent growth spurt, but I worry less now than I used to. I just thought our story did show that JIS really is unpredictable, and there is some subset of kids out there that won't get worse. When this was all new to me I read only the horror stories, so I thought getting our story out there may be helpful to someone.

I wish you guys the very best in your decision-making, because it sure isn't easy... We need better research in JIS. I don't think it is like early AIS, which many orthos consider it to be. I think that it is it's own entity with different outcomes and different responses to bracing, as you said.

L.

[Anna's mom]

Christine2,
Hi, I'm new here and was noticing your daughter's numbers. I was told that a brace would only prevent progression and not correct the curve, but the numbers I see for your daughter are getting better. Please comment as my daughter's scoliosis is progressing and we have decided against a brace and are pursuing the exercise and torso rotation route along with a melatonin supplement each night. Don't want to go against our ortho's rec for a brace if it might be beneficial.
Thanks!

Anna's mom
Daughter dx'd 3/10

[mmm2001]

Hi Anna's Mom-
It has been a while since I posted. My daughter is now 9 years old. Just went to the ortho about a month ago. She remains in the lower 20s. Her rib hump may be a little worse, that's about it. We see him every 6 months.

Obviously I am glad I did not brace because if I had, I would have thought it was working, and therefore would have continued it. She is still prepubertal and of course the adolescent growth spurt may cause her curve to progress, although I am very hopeful.

We did not do any specific exercises although I will say that she is in 5 sports and can easily do 50 push-ups (like a boy, she points out), so she does work her core quite a bit.

There is no convincing evidence that exercise changes the outcome of scoli. To me, there also was not enough good evidence that bracing did either (at least not for how onerous the treatment was), so we took a chance. I would never advocate that anyone else take that chance. The truth is I could have been wrong and she may have progressed quickly and then I would have felt guilty.

We went to a very experienced pediatric spine specialist that I trusted, and he was OK with my plan. That helped, although I knew up front he could have been wrong, too.

I wish you the very best of luck. Sorry for the long post...

Lisa