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View Full Version : Brace check-up and some banter



Pooka1
03-05-2009, 01:19 PM
My "little" (actually ~5' 9" :)) Willow had a 6-month radiograph done. It was 36* so no change from the last visit when it was 40*.

Still almost no rotation. I wonder if the spine can physically curve any more if it doesn't start to rotate. Maybe it is locked at this angle and can't go higher unless it starts to rotate. We'll take that if it is true. :)

The curve was stable in the last six months after moving ~8* in the previous six months (while wearing the brace) and being stable during the six months before that (before the brace).

Clearly, the curve moves when it wants to move irrespective of brace wear.

So here's the new deal as we know it today (subject to change):

1. Risser is ~3 but he said not Risser, not Tanner-Whitehouse, not any other bone age indicators etc. were going to determine the maturity w.r.t. curve progression... in fact they are coming back to chronological age as the main predictor of maturity (if you can believe it) although he mentioned menarche onset also.

2. He agrees with my assessment that the bracing literature is a miasma... can't tell up from down. He still doesn't believe bracing has been shown to be efficacious. Bracing certainly might work but nobody has shown it yet in a well-designed study.

3. I voiced my concern about if Willow stays at ~40* when she reaches maturity and that would lock her out of surgery as a teenager and would seem to doom her to progression through life and eventual surgery as an adult. He said that 50* is the point where you expect most folks to have a progression through life that might necessitate surgery later on. He said Willow will likely not need surgery as an adult if it stays at ~40*.

I asked about pregnancy and progesterone and he denied that that triggers progression in a previously stable curve. That is, he seems to be claiming that progesterone or anything pregnancy-related won't jump-start a previous stable curve of Willow's magnitude.

I asked why the huge difference in average recovery between kids and adults and he said it was because most adults are not just having AIS corrected but have other problems being fixed. That's my understanding of what he said.

So it was a very good visit. We went in there expecting that we would be scheduling surgery in early summer. We came out thinking there was half a chance Willow would never need surgery for scoliosis. There was much rejoicing. And I again credit the power of no prayer whatsoever. :cool:

concerned dad
03-05-2009, 01:53 PM
Bracing certainly might work but nobody has shown it yet in a well-designed study.

:

What do you mean by "work"?
:D


And I again credit the power of no prayer whatsoever. :cool:


Well, um, actually, you see, it's like this ............ When I stopped at St Josephs Oratory outside of St Justine's Hospital I said a prayer for ALL our kids.

:p

Good news on the checkup.

BTW, I think I'm going to follow Pam's suggestion and keep some of the more scientific debates/discussions in the Research area. Makes sense.
of course, if I keep making stupid mistakes reading graphs maybe I should hang it all up.

Pooka1
03-05-2009, 01:59 PM
What do you mean by "work"?
:D

Touché. :)


Well, um, actually, you see, it's like this ............ When I stopped at St Josephs Oratory outside of St Justine's Hospital I said a prayer for ALL our kids.

:p

DOH! :eek: :D

Therefore God exists. :D


Good news on the checkup.

BTW, I think I'm going to follow Pam's suggestion and keep some of the more scientific debates/discussions in the Research area. Makes sense.
of course, if I keep making stupid mistakes reading graphs maybe I should hang it all up.

Don't sweat that mistake. It's extremely minor. Others have made far worse mistakes in peer-reviewed pubs.

WNCmom
03-05-2009, 03:46 PM
Great news about Willow's non-progression, Sharon. Although in a way you are still in limbo, no doubt it's a huge relief to not be heading toward surgery at this point. Will Willow keep on wearing the brace?

Pooka1
03-05-2009, 03:55 PM
Thanks Mary Ellen.

We talked about whether she should continue to wear the brace. Nobody in that room knew the answer though I think we left with our doctor assuming she would.

I continue to leave it up to Willow. I assume she will continue to wear it but I don't know that. It's her decision and while there is no obviously right answer, equally there is no obviously wrong answer.

In re limbo, the Pope said it doesn't exist so we can't be in it! :D It didn't exist, then it did, and now it doesn't!

Actually, we were so mentally prepared for surgery this summer that we feel like the governor called with a reprieve. And I actually have some hope for the first time really that she might not need surgery in her lifetime. But we'll have to wait and see how this story progresses.

mamandcrm
03-05-2009, 06:00 PM
That's excellent news about your daughter, Sharon, both about her remaining stable and her future prospects for surgery (or no surgery, I guess I should say). Your almost out of the woods, hopefully.

debbei
03-05-2009, 06:09 PM
Great news Sharon. I hope your daughter can continue to dodge the surgery bullet forever.

Pooka1
03-05-2009, 09:13 PM
That's excellent news about your daughter, Sharon, both about her remaining stable and her future prospects for surgery (or no surgery, I guess I should say). Your almost out of the woods, hopefully.

Hey thanks.

I need to research this business about progression potential at different angles at maturity. I know from reading testimonials that folks have progressed to surgery when they had smaller curves than Willow presently has. If I can find anything resembling research on it, I'll email it to the surgeon for comment.

Pooka1
03-05-2009, 09:18 PM
Great news Sharon. I hope your daughter can continue to dodge the surgery bullet forever.

Thanks, Debbe.

I know you were told your curves were stable when they were in the 30s and still they progressed. Were you told that was unusual? It doesn't seem unusual based on the testimonials I read here. But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

Anyhoo, nobody is going to fuse Willow if she is sub-surgical at maturity so I guess it's a moot point. She may just have to wait and wonder, unfortunately. That was the one bright spot for getting surgery this summer... she would presumably be done with scoliosis like her sister.

mariaf
03-05-2009, 09:37 PM
Great news, Sharon!!

While none of us know what the future holds, I don't think you could have asked for a better visit - stable curve and the possibility, as someone said of "dodging the surgery bullet" completely.

Pooka1
03-05-2009, 09:54 PM
Great news, Sharon!!

While none of us know what the future holds, I don't think you could have asked for a better visit - stable curve and the possibility, as someone said of "dodging the surgery bullet" completely.

Thanks Maria.

We were blind-sided by the stability because both Willow and I thought the curve had progressed.

She still has a ways to go but it's looking less certain about needing surgery. It's just lucky that she isn't rotated. If she was obviously rotated and also sub-surgical, I know it would bother her. Small mercies.

txmarinemom
03-05-2009, 10:18 PM
I know you were told your curves were stable when they were in the 30s and still they progressed. Were you told that was unusual? It doesn't seem unusual based on the testimonials I read here. But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

If I'm not mistaken from our conversations, wasn't your curve was deemed stable at skeletal maturity (or shortly after), Debbe? Maybe I misunderstood.

Sharon, I don't know of anyone (in the time frame of Debbe's bracing - within a few years of mine) who was told anything other than "when you're done growing, the curve stops". And whether you were 35° or 50°, they thought that's where you'd stay.

The 50° theory wasn't one widely subscribed to when I came out of my brace. I can imagine most doctors today wouldn't release an adolescent with a ±50 curve at growth end without discussing surgery, but they definitely did back then.

There are strong suspicions progesterone can allow a curve to move during pregnancy, but just like anything else, it has to be the type of curve prone to progression. Mine wasn't ... but I know plenty of people who did.

The Baylor Scoliosis Center (http://www.thebaylorscoliosiscenter.com/scoliosis/what.htm) states:

"Adults with scoliosis face more difficulties than children. Adult patients, particularly women, fall into one of these categories:

Young women with very large curves who have no pain. The probability of their disease progressing is 80 or 90 percent and that untreated, they may have problems later in life. Treatment options are determined on a case-by-case basis.

Young women who have a history of scoliosis who were told their curves would not progress in adulthood. Their curve was stable with no back pain, but after pregnancy things changed. The progesterone produced in pregnancy possibly causes the new curvature. The ligaments become lax during the pregnancy and to prepare for delivery and during this time, the curve progresses. Some of these women are now experiencing pain.
Women who had a small curve that continued to progress throughout adulthood, but not related to pregnancy. In their 50s, the deformity has become an issue and pain might be affecting their quality of life.


Research has shown that in adolescent idiopathic scoliosis, curves more than 50 degrees tend to show steady stepwise progression in adulthood at a rate of about one to two degrees a year. Although many smaller curves tend to remain stable into adulthood, there are some that continue to show unexpected adult progression despite falling initially short of the 50 degree magnitude."

This view is all I've ever read in about the last 10 years from the experts. I know I've seen studies on the progesterone link ... and will try to dig them up.

In answer to your question of what is usual, it appears NOTHING is really all that UNusual in women with AIS.

Who knows whether the fact my curve was JIS vs. AIS had anything to do with the fact my curve didn't progress at all ...

Regards,
Pam

debbei
03-05-2009, 10:30 PM
Sharon & Pam,

At the time I was released from my orthopedic doctor at age 23, I was told that I shouldn't progress any further. :mad: That's when both curves were around 30-35 degrees. Granted, this was back in 1985. Sheesh I'm getting old. :)

Then in 89 I had xrays taken by another Dr. Dumbell because I was having tailbone problems, who didn't know how to read them properly. He never measured them correctly. When I brought this 1989 Xray to Dr. Neuwirth last spring, he measured that old film at about 45 and 35. Since 1989 I continued to progress. I think it is my daughter's ortho doctor now who recently told me that at skeletal maturity with a 45-50 degree curve, the chance of progressing is 50/50. Some do; some don't and we really can't tell who will and won't. (Without that genetic test, I suppose)

Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.

txmarinemom
03-05-2009, 10:49 PM
Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance.

I feel exactly the same - very grateful I didn't have it for pain at 29 vs. 39 ... and I talked to a surgeon in '97.

There's not a doubt in my mind I would be SO messed up now if I'd let him touch me.

Regards,
Pam

RugbyLaura
03-06-2009, 04:23 AM
Sharon, your post made me smile from ear to ear. I know just how wonderful that expected good news (and glimmer of hope) feels, from our appointment last month.

Long may it continue!

Laura x

Snoopy
03-06-2009, 06:11 AM
But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

Sharon,
My daughter was diagnosed at the age of 12 with a Scoli curve of 36*. Within a year, she was skeletally mature and her curve was 46* and still progressing. We all know each person is different. Just wanted to share Jamie's experience as you do your research.

Mary Lou

jillw
03-06-2009, 01:18 PM
Sharon, sound like you got some good news and some interesting answers! Don't you love those satisfying appointments? I do find it very fascinating that with a 40 degree curve she has no rotation. (my daughter's pre brace curve was approx 20 and yet she already had rotation - just shows how unique each case is).

txmarinemom
03-06-2009, 02:07 PM
I didn't even say what GREAT news that is about Willow! After seeing Savannah's success, I'm sure she did have her mind set on being "done" with it (hopefully in a forever kind of sense). As amazing as surgery is these days, I hope she'll realize she really did end up the lucky one - unfused and in no pain. Hopefully it stays that way.

In another thread, I'm sure I seemed anti-brace. As I wrote someone earlier, it more accurate to say I'm not PRO-brace because anomalies often seem to be the majority with scoliosis. I just can't see fathom how any bracing study could ever be completed in the absence of clones (even monozygotic twins vary too much for comparison).

Debbe's case, my case, MaryLou's Jamie's case, and Jill's daughter's case (among too many others to mention) just demonstrate the variances in the population.

One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?

Regards,
Pam

Carmell
03-06-2009, 02:41 PM
One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?

Sharon - congratulations to Willow for a successful appointment. Those are always nice, emotionally. I do know that nagging feeling you'll have in the back of your mind, wondering if a 40+/- degree curve is a stable curve. Best wishes for more appointments like this one.

Pam - my daughter (now 23) has a lumbar curve with significant rotation. The curve measures about 30 degree now (had been measured as high as 39 degrees). Her's was diagnosed on her 13th bday. I know her's is typical adolescent scoliosis, not JIS. Significant rotation (in my book) makes no difference when the diagnosis was made. (That's not a grammatically correct sentence - ugh.) In all the talk about whether or not bracing is effective, I honestly don't think there is a way to get a good, scientific study done. Too many variables involved. Every person's body is so different, in make up, that no two are alike. Therefore, no two can be compared (extreme example, I know, but still). I am very happy Willow has no rotation (fabulous news, that, alone). With Kara's significant rotation, she was borderline for deciding if surgery would help. She (and docs) chose no surgery at the time, but careful monitoring (yearly xrays) as she gets older. So many things to consider.

Pooka1
03-06-2009, 05:08 PM
Research has shown that in adolescent idiopathic scoliosis, curves more than 50 degrees tend to show steady stepwise progression in adulthood at a rate of about one to two degrees a year. Although many smaller curves tend to remain stable into adulthood, there are some that continue to show unexpected adult progression despite falling initially short of the 50 degree magnitude."

The first part of this is what I was told. I wonder how many smaller curves progress to surgical territory over a lifetime.


This view is all I've ever read in about the last 10 years from the experts. I know I've seen studies on the progesterone link ... and will try to dig them up.

Thanks. I'll email them to the surgeon for comment.

Pooka1
03-06-2009, 05:12 PM
Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.

Yes this is the way I have to look at it. It's just that if what the surgeon says is true, that adults have a harder time because they have more issues being fixed than kids (on average), then that means the longer you have scoliosis the more associated problems you have. So even though the surgical techniques might be better, she will likely have more damage at that point to be fixed.

The techniques are good enough now that I wonder if they will lower the surgery trigger point to 45 or even 40 to avoid that if it can be shown that a large percentage of folks at ~40* will progress to surgery territory in their lifetime.

Pooka1
03-06-2009, 05:13 PM
Sharon, your post made me smile from ear to ear. I know just how wonderful that expected good news (and glimmer of hope) feels, from our appointment last month.

Long may it continue!

Laura x

Thanks and congratulations on your last appointment!

Pooka1
03-06-2009, 05:15 PM
But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

Sharon,
My daughter was diagnosed at the age of 12 with a Scoli curve of 36*. Within a year, she was skeletally mature and her curve was 46* and still progressing. We all know each person is different. Just wanted to share Jamie's experience as you do your research.

Mary Lou

Well 46* at maturity is within the precision of the magic 50* so I guess they would expect her to progress at 46*.

If Willow gets to 45*, I'm going to suggest that is indistinguishable from 50* and ask if it is still sub-surgical.

Pooka1
03-06-2009, 05:17 PM
Sharon, sound like you got some good news and some interesting answers! Don't you love those satisfying appointments? I do find it very fascinating that with a 40 degree curve she has no rotation. (my daughter's pre brace curve was approx 20 and yet she already had rotation - just shows how unique each case is).

Unique is right. Savannah's curve was extremely noticeable at a much lower angle due to the rotation. She was quite rotated and I was amazing how much of that they were able to correct.

Willow's curve is so different from that.

Pooka1
03-06-2009, 05:19 PM
I didn't even say what GREAT news that is about Willow!

Thanks, Pam.


One thing that appears somewhat more common (at least in my observation) is that rotation seems to manifest more frequently with JIS. Has anyone else noticed (or imagined - LOL) a correlation?

Well, as I've mentioned, I don't think Frick and Frack here have AIS but rather scoliosis associated with a connective tissue disorder. If so, and based on just their case, rotation is HIGHLY variable, ranging from extreme to almost none.

Pooka1
03-06-2009, 05:20 PM
Sharon - congratulations to Willow for a successful appointment. Those are always nice, emotionally. I do know that nagging feeling you'll have in the back of your mind, wondering if a 40+/- degree curve is a stable curve. Best wishes for more appointments like this one.

Thank-you, Carmell.

emarismom
03-06-2009, 05:36 PM
Sharon,

That is wonderful news that you had a positive appointment. We all hope and pray for those as the dreaded appointments near!! No rotation is amazing!!


Originally Posted by debbei
Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.


This is a good way for all of us dealing with scoli to look at it. If we can "buy"
time, maybe something will come along that will help us to avoid surgery or at least reap the benefits of new scientific procedures.

Because I went through decompression surgery with Emily when she was 5, I was terrified at the thought of a possible fusion. As the years passed, with no progression and no brace, that anxiety grew. There seemed to be no viable option except to wait and watch and LET her progress!! When I finally started to consider bracing, a hard brace wasn't an option in my mind. When I thought it was not even worth a shot to try the Spinecor, it actually CAME to me. The chiro that braced her was actually setting up an office less than 5 minutes from my house! He contacted me!

I don't know if the Spinecor is going to prevent my daughter's curve from progressing, nor do I know if it is even holding her curve right now. What I am most hopeful for is that it is buying me time!

Pooka1
03-06-2009, 05:53 PM
Emarismom, Thanks.

Buying time is really the name of the game with JIS (and some AIS cases). I really hope some of these approaches pan out.

Pooka1
03-07-2009, 09:01 AM
Forgot to mention something during the exam...

At one point, the surgeon asked Willow to bend forward and touch her toes. She couldn't get closer than about 8" and he said she had tight hamstrings.

The reason I find this curious is that Willow has a diagnosis of hypermobility syndrome, a hallmark diagnostic test for which is being able to not only touch your toes but lay you palms flat on the ground. And that wasn't the only test she "failed" for hypermobility syndrome.

On the other hand, I have always been able to lay my palms flat on the ground but I know I would have failed many, if not most, of the other tests for hypermobility syndrome.

Complexity and perplexity.

Snoopy
03-07-2009, 10:20 AM
[QUOTE=Pooka1;72660]Forgot to mention something during the exam...

At one point, the surgeon asked Willow to bend forward and touch her toes. She couldn't get closer than about 8" and he said she had tight hamstrings.QUOTE]