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emarismom
06-04-2009, 05:49 PM
Today I took Emily for an xray and appointment with her regular ortho. The xray read at 27 degrees out of brace. It is within the margin of error of last years out of brace (24 degrees) and still below out initial baseline (28 degrees). But it is trending upward. Doctor stressed to keep Emily braced as he feels that this year will bring alot of growth and with that the possibility of progression.

I will visit the brace doctor in three weeks in Atlanta to readjust her brace and probably change out some of the parts. I'm sure that he will want another xray at that point to see what her curve is in brace.

Looks like Emily will be spending much of her summer in doors!!:(

mamandcrm
06-04-2009, 06:23 PM
Hi emarismom,

I'm really sorry your appointment did not bring you the news you were looking for. But it looks from your signature that your daughter has not progressed passed her initial measurement and, after a few years, that is not a small thing in my opinion. I wish the best for you and hope things continue to hold steady (or improve, of course). She's still in an OK place:)

Pooka1
06-04-2009, 09:02 PM
I agree. Her curve has been stable for almost five years. That's a big thing. Hopefully she will at least hold there and maybe ever get straighter. Maybe the brace did buy time to date.

Good luck.

S4Sarah
06-04-2009, 09:19 PM
Some people said they had their doctor drill small holes in their plastic brace and it kept them cooler. Maybe you want to look into that?
Have you also tried exercises or Spinecor? Spinecor has had better success in some cases than the hard plastic braces. One girl in one of the testimonials not only had her curve stay stable while she grew it improved with Spinecor!
Another thing you might want to look into.

Good Luck

emarismom
06-05-2009, 12:57 AM
S4 Sarah, Emily is using a Spinecor brace. She has been using it for 2 years.

Sharon and mamandcrm, I know that it isn't terrible. In some ways it is great that she has never progressed past the baseline. It may well be that her brace is keeping her curve smaller. However, there have been OOB xrays in the past 4 1/2 years as low as 17 degrees, so I tend feel that we may be at the start of seeing movement in the curve. Especially given the fact she is now 10 1/2 years old.

Next week we are going on a cruise, each minute I have her OOB will have me worried now.

RugbyLaura
06-05-2009, 12:15 PM
Michelle, sorry to hear your news - I know how much we all read into any change in measurement, however small.

Immi has not been wearing her brace much at all recently - we're all so paranoid about the new upper curve that we've lost faith a bit (well, a lot really). She tends to go the whole school day without it on and then wears it for the rest of the time :eek: She's loving it! Although feeling a little guilty, as all of us are - who knows what the right thing is? We all just do the best we can.

Next appointment in August for us - good luck to you in 3 weeks, and keep us informed (why not on the spinecor thread?)

Laura x

emarismom
06-05-2009, 12:49 PM
Laura,

Thank you for your thoughts. I didn't post on the Spinecor thread because honestly I forgot about it. I wasn't really thinking straight yesterday. For the first time in 5 years our doctor really seemed to think that progression may occur. That really threw me off. Most of the time he just deals with all my questions and concerns, but I could always tell he thought I was over reacting and she would not progress. This time he told me in NO uncertain terms to keep her braced and to be compliant ( I told him I had been considering given Emily more time out over the summer).

I'm not sure if it because she is now entering a major growth spurt or if it is because Chiari related curves are typically very hard to control or a combination of the two. I got that OMG feeling I had when he initially saw us 5 years ago, before the Chiari and syrinx were even diagnosed.

I'm sure Immi must be thrilled to not have to wear her brace as much. It must feel good for you too. Just the thought of letting her be happy!

concerned dad
06-05-2009, 01:22 PM
I hope you enjoy your cruise and find strength in:

the knowledge that you have been successful at stabilizing her curve so far.
the good inbrace correction she is achieving
the minor change, albeit an increase, is still well within the margin of error for a stable (or even decreasing) curve.

mariaf
06-05-2009, 09:51 PM
Emarismom,

Sorry to hear this. I know the feeling of hearing the doctor say something other than what you're hoping for.

Keep in mind though, that sometimes a doctor's reaction is not necessarily indicative of what will happen - meaning they could be looking at the "worst case scenario" and trying to prevent it - hence, his recommendation to be compliant.

I know it's hard not to worry, but remember too that this is within margin of error and that sometimes the curves DO fluctuate a bit.

Good luck,

emarismom
06-06-2009, 07:52 AM
Thanks CD and Maria,

I know it isn't the end of the world. My "expectations" and "reality" just haven't meshed yet. Part of it is the hope I had that putting her in a Spinecor at such a young and flexible age would bring some correction. Obviously not the case but still the best option of the few bad options there are.

Maria, how long ago did the stapling start? Meaning how old the oldest children to have the stapling done? Has the correction achieved through stapling held through the teenage growth spurts until and past maturity? I did talk to Janet a few years ago, but decided on the Spinecor. Maybe I should reconsider the stapling.

mariaf
06-06-2009, 07:17 PM
Hi Emarismom,

When we first researched stapling in 2003, I spoke to parents whose kids were between 1-2 years post-op, so I'm guessing it began in 2001 or so.

Out of all the kids stapled since then, I'm sure some have gone through the teenage growth spurt and reached skeletal maturity. Many others who were stapled at a young age (6, 7, 8, etc.) obviously have not reached skeletal maturity. I don't know what the numbers/percentages are of kids who've gone through the teenage growth spurt, but Janet would have a very good idea I'm sure.

I do know one girl who was within the first 20 patients ever to have VBS when she was around 11 or 12. She is now in college and has done very well.

Please let me know if you have any other questions and best of luck to you and your daughter!

jillw
06-07-2009, 02:33 PM
Michelle, This is a long and tough struggle, isn't it? Really the past 4 years have been a major success, but I can understand how a curve increase of a few degrees, even though within the margin of error, can cause so much anxiety. I bet you are right that it is Emily's age that caused the ortho to seem more serious/concerned. It's a scary age since you know the rapid growth is about to begin (or maybe has begun). Has she grown faster than usual recently? Good luck at your next appointment-maybe some brace fitting adjustments will make a difference. When will you get the next out of brace xray? I hope when that time comes, you are given good news about the curve remaining stable or even decreasing closer to the 17 degree range it had reached at one time.

Cheergrl
06-07-2009, 07:44 PM
i know how you feel my curve was around 34 degrees but in the brace about 20 something degrees and im 12 years old by the way but i have a MAYJOR:eek::eek: heat rash because of mine and hey its ok ill be indoors alot to so tell her its not so bad but boring and maybe shell be able to outside sometime im really sorry about your problem and if you need any advise please feel free to ask i know all about it:):):)

emarismom
06-07-2009, 07:58 PM
Jill and Cheergirl, thank you for the thoughts.

I don't think that we will have another out of brace x ray for a year. Our ortho wants us to have at least one out of brace a year to monitor her. The Spinecor doctor prefers in brace, so I've been trying to have one every six months and alternate out of brace and in brace. This time it looks like I will probably need to do an in brace in three weeks when we get the brace adjustment. It is very hard to balance the ortho with the brace doctor.

Her growth has been pretty steady actually. 3/4 inch in the past 3 months,
1 1/2 inch over the past six months. She is about 55 inches tall now, so she still has quite abit of growth left (Although not too much as I am only 5'0 tall;)

Pooka1
06-07-2009, 08:14 PM
I don't understand why Chiari-associated curves move at all after the Chiari is addressed. Why does the curve continue to move??? Is all the curvature about the one point where the Chiari (ETA: I think I meant syrinx not Chiari) was or am I completed in the dark about this?

emarismom
06-07-2009, 08:39 PM
I do not know why the curves move. In many cases, once the decompression is done. The curve stabilizes or improves, especially when the syrinx recedes. However, when the curves do progress, they do so rapidly. The studies that have been conducted tend to focus on the immediate future following the decompression- about 5 years out. The few longer term studies that I have found suggest that while initial curve stabilization or improvement is the norm, further out can be a very different story.

Larger curves in older children (above 10) do not have the same initial outcomes as smaller curves in younger children. It would appear that the adolescent growth spurt does impact these curves.

Noone really knows what the connection is between chiari/syrinx/scoliosis. The thought is that the syrinx causes the scoliosis. The chiari causes the syrinx. Yet there is no rhyme or reason to the three conditions. Some people with very larger cerebral herniations (Chiari) have no syrinx or scoliosis. While others with small herniations have large syrinxes and may or may not have scoliosis. Also the size and location of the syrinx is not an indication whether a person will have scoli.

Pooka1
06-07-2009, 08:42 PM
Hey thanks for that explanation! I was not grokking CM/SM/scoli at all.

It's sort of amazing how "black box" it still is. Hopefully they will put that puzzle together soon.