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Pooka1
09-25-2008, 02:27 PM
Well my little Willow went in today for her six month check-up.

She slept without the Charleston brace last night and had a hard time. She is only comfortable sleeping in the brace it seems. The surgeon said about half his patients in that brace report that. He also said it is not necessary to stay out of the night-time braces to get an accurate angle like it is for the 23 hour/day braces. So she could have worn it last night and it wouldn't have mattered.

It seems her curve went up from ~33* to ~40* in the last six months. (That's 33.1047* to 40.082634* for you chiro types. :cool:)

She still has almost no rotation and the surgeon mentioned that quite a bit. So she's lucky to still look mostly normal even though she has a 40* curve. In fact she has the same amount of shoulder blade protrusion as her sister who was corrected down from 58* to 5*. Amazing.

Maybe the brace is slowing the curve progression from what it would be and maybe it isn't. The curve didn't move at all in the several month period before we got the brace. I suspect it moves when it wants to move irrespective of the brace especially since we have a diagnosis of hypermobility syndrome for Willow.

Her Risser is ~2.5 so she is half way home. If she can stay below surgery territory until she is a 5, she can lose the brace and avoid surgery.

Amazing how my identical twin daughters continue to have totally different curve trajectories.

I brought up the issue that even if she manages to stay at a 40* when her Risser is 5 that she might experience curve progression or pain that might necessitate surgery as an adult (my biggest fear).

He said that only 5% of folks who make it to a Risser of 5 and are below surgery territory ever have progression to surgery territory. That surprised me because of the testimonials on this group. But maybe the 5% is over-represented on this group.

I brought up the issue of adults having surgery due to pain even at a non-surgical Cobb angle and he ABSOLUTELY rejected that OUT OF HAND. He said pain in a smaller curve is due to something else besides the scoliosis.

There is hope Willow can avoid surgery. But if the curve continues to progress at this rate, I think we will pull the trigger for surgery on the next visit in March and that will put her in surgery at the beginning of summer and not have to miss any school. Small mercies.

emarismom
09-25-2008, 05:19 PM
Pooka,

I am sorry that you did not get better news. There is still hope that Willow will not progress anymore. We always have to keep that faith. We as parents are very fortunate that there is a surgery that can correct our children's conditions. There are others who don't have that hope. I will keep you in my prayers that the visit in March gives better news.

It is ironic that Willow now prefers to sleep in the brace, Emily would probably burn hers if she could:p


On another topic, I recently saw a thread on here about a research study being conducted by a company called Axial Biotech. The company claims they will be releasing a saliva test in early 09' that will be able to predict which scoliosis curve will progress in the future by using genetic testing.

Well after reading the article, I contacted the company. I have agreed to put Emily in one of their research studies. Even though the actual test is for "idipathic scoliosis", they have agreed to test Emily and put her in. I haven't recieved the kit yet, but assume that with it will come a more detailed explanation of the entire study. I do have the contact information if anyone else is interested.

I will not recieve the results of the study. As all participants are anonymous. I do however, fully intend to have this test done next year as soon as it becomes available. I sure hope that they publish some research studies prior to the test becoming available to the general public. I realize that there are "no guarantees", but I sure wish I had some inclination as to whether Emily's curve will progress. Even if the test never helps my daughter, hopefully it will help prevent some future young children and their parents, from living with all the uncertainty that scoliosis brings.

mariaf
09-25-2008, 09:40 PM
He said that only 5% of folks who make it to a Risser of 5 and are below surgery territory ever have progression. That surprised me because of the testimonials on this group. But maybe the 5% is over-represented on this group.

First of all, Sharon - I'm sorry you didn't get better news.

It's funny about what you wrote - someone told me once to keep in mind that a large portion (not all, but certainly a large portion) of the folks on any forum or support group ARE the ones who belong to that small percent who did develop problems. Many of the folks who encountered no problems or issues are off somewhere else. So maybe what he said about 5% is correct - I don't know.

Again, sorry there was any progression at all but I'll remain optimistic :)

txmarinemom
09-25-2008, 10:22 PM
I'm taking the liberty of reordering the very first portion of your post only so I can get laughter out of the way before seriousness ...


It seems her curve went up from ~33* to ~40* in the last six months. (That's 33.1047* to 40.082634* for you chiro types. :cool:)

That may be one of the funniest things I've read in a while ... and I needed the laugh. Thanks ;-).

Now ... onto the other ...


... She slept without the Charleston brace last night and had a hard time. She is only comfortable sleeping in the brace it seems. The surgeon said about half his patients in that brace report that. ...

That really doesn't surprise me. The (for lack of a better term) "overcorrection effect" of the Charleston probably feels fantastic. I could lie for *hours* (literally) over my balance ball (opposite the convex side of my thoracic curve) ... and it felt ... ~heavenly~.


... She still has almost no rotation and the surgeon mentioned that quite a bit. So she's lucky to still look mostly normal even though she has a 40* curve.

Remember the pre-op pics you saw of me in a swimsuit, Sharon. I was a +2 rotation, and 53 curvature. It was virtually invisible, and I honestly can't say why some curves hide and/or more balanced. I suspect it's far less rare than (as Maria said) what we see here.


... Maybe the brace is slowing the curve progression from what it would be and maybe it isn't. The curve didn't move at all in the several month period before we got the brace. I suspect it moves when it wants to move irrespective of the brace especially since we have a diagnosis of hypermobility syndrome for Willow.

I wish someone could answer your question of the brace for Willow (or any child), and I hope I live long enough to SEE it answered. As I've written before, I was largely non-compliant ... and my curve progressed to surgical range - and stopped. Even in adulthood.

Willow's Marfan-like CTD (just guessing that's the hypermobility syndrome ... correct me if I misunderstood) makes prediction even more difficult :(. I also believe some curves will be held by any brace, some by no type of brace - and some in the absence of *any* brace.


... He said that only 5% of folks who make it to a Risser of 5 and are below surgery territory ever have progression. ...

... I brought up the issue of adults having surgery due to pain even at a non-surgical Cobb angle and he ABSOLUTELY rejected that OUT OF HAND. He said pain in a smaller curve is due to something else besides the scoliosis. ...


Sharon, I might can agree with his view on progression (I was certainly an anomaly), but it's also proven that increased progesterone during pregnancy can make a previously sub-surgical range curve take off.

On his dismissal of pain, I must vehemently disagree. I personally know too many adults with scoli (even in the 30-40 range - and NOT on this list) who have pain. People who have had long term pain (i.e., since childhood), as I did. My curve wasn't 53 when I was 10, yet I had back pain that would drop most adults to their knees ... and it wasn't caused by DDD or bulging discs.

And I'll pose this question to his statement "...pain in a smaller curve is due to something else besides the scoliosis...":

If an adult patient with a, say, 35 curve has pain - and maybe there's a disc protrusion CAUSED by misalignment - isn't the root cause of the pain still scoli?

I know the camps are still split, but my surgeon is firmly in the one who believes it can - and often DOES - cause pain. Again, I had back pain at age 10. Just food for thought.

Hang in there (I know you will) ... and I have everything that's still "crossable" in place for a better follow-up on her next visit.

Regards,
Pam

Pooka1
09-26-2008, 07:19 AM
Pooka,

I am sorry that you did not get better news.

Thanks. I think she has been steadying herself over the last several months for the possibility of surgery. And my husband and I have been steadying ourselves ever since Savannah had her surgery for the possibility that Willow will need it also.


On another topic, I recently saw a thread on here about a research study being conducted by a company called Axial Biotech. The company claims they will be releasing a saliva test in early 09' that will be able to predict which scoliosis curve will progress in the future by using genetic testing.

That sounds interesting. I really hope they can make some headway on this. Some kids will avoid unnecessary bracing but it doesn't address whether bracing slows/stops progression in a meaningful way for many/most kids. Very hard to get that kind of data.

Pooka1
09-26-2008, 07:21 AM
First of all, Sharon - I'm sorry you didn't get better news.

It's funny about what you wrote - someone told me once to keep in mind that a large portion (not all, but certainly a large portion) of the folks on any forum or support group ARE the ones who belong to that small percent who did develop problems. Many of the folks who encountered no problems or issues are off somewhere else. So maybe what he said about 5% is correct - I don't know.

Again, sorry there was any progression at all but I'll remain optimistic :)

Thanks, Maria.

My perception is definitely skewed by who decides to post testimonials. It's such a small sample size as to be almost meaningless in the big picture. That's why I ask the surgeon the questions I ask.

Pooka1
09-26-2008, 07:33 AM
Willow's Marfan-like CTD (just guessing that's the hypermobility syndrome ... correct me if I misunderstood) makes prediction even more difficult :(. I also believe some curves will be held by any brace, some by no type of brace - and some in the absence of *any* brace.

I responded...
No the hypermobility syndrome is separate from CTD, ED, Marfan's etc. All of those were ruled out by the geneticist (and myself separately just in my reading). The only differential diagnosis we pursued was the homocystinuria which they don't have per the blood tests. The diagnosis for Willow is Hypermobility syndrome which is a type of collagen malfunction different from the other conditions as I understand it. We also can't rule out emerging Marfan's.

I misread this. I read the CDT as CMT.

Yes you are correct that hypermobility syndrome is a Connective Tissue Disorder. The surgeon called it a collagen disorder and was surprised to hear Savannah was not also diagnosed with it given Willow was.

Also, as afar as I know, a person can have hypermobility syndrome and not have Marfan's. I'll take hypermobility over Marfan's. What I know about this stuff wouldn't begin to fill a thimble. :(

Pooka1
09-26-2008, 10:24 AM
DOH!

I erased my original response to Pam by mistake.

In re the pain with smaller curves, I'm guessing he thinks there is no pain absent some disc problem. I don't know.

Thanks for your response.

sharon