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mbellcamp
05-13-2009, 08:59 PM
Hello, We are new members....great site to gather info and wisdom.

We were just given the news last Thursday that our daughter "C" who just turned 14 has a severe case. Numbers are T39.8 and L43.9 No prior indication until she complained about her back hurting a couple of months ago. We mistook it, that her heavy backpack was the cause. Three weeks ago, we had her at the emergency room with what we thought was a partial collapsed lung. After an x-ray, they said it was inflammation around the lung lining and sent us home with some anti inflammatory meds. It was a week after, when our daughter noticed in the mirror her hips were slightly out of balance. Off to a Pediatric Ortho who gave us the news last week. Shock is an understatement. They have us scheduled this Monday for the brace fitting. The prescription is TLSO, so we believe it will be the Boston brace. The Ped Ortho Surgeon says she just has to wear it at night and after 6 months they will see if it held the progression.

Our questions, among many, are: first, is "just at night" the right thing instead of 22hrs (the Dr. says they try and spare the kids the extra stress of being "different" at school). Is this because he knows that with her high numbers we are inevitably looking at surgery so why add undue effects to her self esteem? She hasn’t started her Menarche and the Dr. says that from looking at her growth plate she has about another 2 yrs of growing. Second question; do they wait until they stop growing to do the surgery or go ahead if after 6 to 12 months they are over 50 with their numbers?

Sorry for such a lengthy post. We are trying to take it all in and our heads are just spinning.

RugbyLaura
05-14-2009, 07:05 AM
Hi mbellcamp,

Sorry to hear your news. For what it's worth (and I'm no expert!), my answers are:

1) Never heard of using a standard TLSO at night only. (I would certainly have considered this option for my daughter if offered).

2) It seems to depend on your surgeon... and the flexibilty of the spine in question. My daughter's surgeon is "happy" to wait until her curve gets "into the 70s" as long as it remains sufficiently flexible to allow for good correction.

All the best,

Laura

edited to add - as I understand it, fusion of a spine which is still growing is a much more complicated procedure and is not desirable if it can be delayed.

concerned dad
05-14-2009, 07:05 AM
Our questions, among many, are: first, is "just at night" the right thing instead of 22hrs (the Dr. says they try and spare the kids the extra stress of being "different" at school). Is this because he knows that with her high numbers we are inevitably looking at surgery so why add undue effects to her self esteem? She hasnít started her Menarche and the Dr. says that from looking at her growth plate she has about another 2 yrs of growing.


Welcome.
Is it the "right thing" (Night bracing), well, I dont think anyone can say if it is right or wrong but I can tell you it sounds reasonable and if I were in your shoes I would probably give it a shot (as opposed to full time bracing). I suspect they will not use the Boston brace but rather a Charleston or Providence.

Is surgery "inevitable" in your daughters case, I dont know if that is the word to use, but the evidence points to the belief that curves that large in premenarchal girls almost always progress.

You have to be aware that there are no orthopedic doctors here and any advice folks offer should be taken with a grain of salt.




Second question; do they wait until they stop growing to do the surgery or go ahead if after 6 to 12 months they are over 50 with their numbers?

Sorry for such a lengthy post. We are trying to take it all in and our heads are just spinning.

I think they usually wait till 50 degrees, but if your daughter is in pain I would think that would over-ride anything else. There are others here who can better address that question.
So, the ER Xray did not catch the scoliosis? Is your daughters pain still present?
I wish you the best.

Pooka1
05-14-2009, 07:40 AM
Hi. Sorry about the diagnosis. I'll try to answer the questions.


(snip)
Our questions, among many, are: first, is "just at night" the right thing instead of 22hrs (the Dr. says they try and spare the kids the extra stress of being "different" at school). Is this because he knows that with her high numbers we are inevitably looking at surgery so why add undue effects to her self esteem? She hasnít started her Menarche and the Dr. says that from looking at her growth plate she has about another 2 yrs of growing.

Can you email this question to your surgeon? Our surgeon fields email questions. None of us can guess why the surgeon told you that. I am sure he will tell you exactly what he is thinking on this matter.


Second question; do they wait until they stop growing to do the surgery or go ahead if after 6 to 12 months they are over 50 with their numbers?

There is risk to operating on kids with a low Risser as the spine continues to grow at the front after fusion unless fused there also. I think they will balance the Risser with the curve angle considerations and operate at the earliest possible time that doesn't carry a large risk of crankshafting.


Sorry for such a lengthy post. We are trying to take it all in and our heads are just spinning.

I don't consider that a unduly long post. :) Please don't worry about the length of posts.

It's a lot to digest. As you learn more about it, you learn what you can control and what you can't and then can make good decisions. You'll be a star. :)

Good luck.

gardenjen
05-14-2009, 07:54 AM
I think the Risser score (measure of maturity, usually looking at calcification of the pelvic crest) is important. I saw this formula on the SOSORT website, which might be a helpful guide if you can find out your score:

SOSORT formula and recommendations:

Risk of Progression = Cobb angle - (3 X Risser score) / Chronological age.

a. progression risk less than 40% = observation
b.Progression risk 40%: Outpatient P.T.
c. Progression risk 50%: Outpatient P.T., intensive program, where available
d. Progression risk 60%: Outpatient P.T. intensive, and part-time brace (16-23 hours/day)
e. Progression risk 80%: Outpaitent P.T., intensive, full-time bracing (23 hours).

I don't know who your surgeon is, but when we were looking at the possibility of surgery for our daughter (who has elected to postpone, with T and L curves ~45-50 degrees), George Picetti in CA was the guy who had done all that work on thoracoscopic minimally invasive surgery and we had hoped to see him. Our insurance didn't cover him so we had our consult and initial surgical plan through Shriner's in PA.

RugbyLaura
05-14-2009, 08:22 AM
Hi Gardenjen, just out of interest, I applied your formula to my daughter's figures of 2 years ago.

Cobb angle = 38 - (3 x Risser score) 0 / chronological age 9 = 4.2r

Have I done it wrong or am I missing something?

Laura

mamandcrm
05-14-2009, 08:26 AM
Hi there,

If you haven't already, I would read what is available to you via internet on the night time braces (it's not a whole lot and at least will orient you as to how they have been used in the study setting) and then use that information to ask further questions of your surgeon. That way you will know what he/she is thinking, and can decide if it makes sense to you. For whatever it's worth, I think your daughter's curves sound on the high end for night-only bracing but that does not mean it won't be effective to hold her given her particulars, or that full-time bracing would get you anything better. We were offered night only bracing at the beginning as well and I was relieved at that. I know I would have resisted full-time bracing at that point.

Hard to make these decisions. Good luck to you.

StephanieSmiles
05-14-2009, 04:00 PM
Our questions, among many, are: first, is "just at night" the right thing instead of 22hrs (the Dr. says they try and spare the kids the extra stress of being "different" at school).


Hi! Welcome! I'm not sure about surgeries or any of that, but I would like to share with you my personal experience.

First of all, I am fifteen and just got my brace about two months ago. I'd just like to tell you that wearing a Boston just at night (according to my orthotist) would definitely not be as effective as an almost-full time wearing schedule. I wear mine for 21 hours a day, and is giving me near-perfect results. My curve is not only holding in-brace, but it is reducing! Just wearing a Boston at night is not something I would consider ideal, since your daughter's curvature is realtively high. I would highly reccomend a 21 hour a day wearing schedule, but of course I am very young and certainly not a doctor. As far as being "different" at school, well this is just setting your daughter up for making her feel different. As a Freshman, things are hard enough as it is. And I was completely convinced that EVERYONE would know about my brace the moment I stepped into school, but I couldn't be farther from the truth. No one noticed and no one treated me in a strange way, as if I was "different" (as you say) or weird.

There may be some brief physcological issues (of course we're all sad and self concious when first wearing our braces) but it will usually go away. These days TLSO underarm braces are very low-profile and with the right clothes, unnoticable.

Again, I might not be the best to give advice, but from a kid's point of view, this is my honest opinion.

Good luck!!

Also: your daughter should make a SpineKIDS account. There are more kids she can talk to about scoli troubles and tough times!

concerned dad
05-14-2009, 05:56 PM
She hasnít started her Menarche and the Dr. says that from looking at her growth plate she has about another 2 yrs of growing.

Something else occured to me about your post.
You say she is 14 but premenarchal. As you may know (or will soon find out) menarche is used as an important skeletal maturity indicator (as well as the 'growth plates" you doctor mentioned which I assume is related to her Risser sign).

I guess my point is, IF (big IF) your daughter is more skeletally mature than her menarche or risser suggests it could be a positive thing relative to expected curve progression. (According to Wikipedia, not the best source of info but convienent, the average age of menarche in the US is 12.5 years. )

For my daughter, she was Risser 0 at 14 years (but post menarch). The doctors said these two markers were "discordant" (which one do you take to the bank?). We sought the opinion of someone who could determine her skeletal age based on an xray of the hand (I know, it sounds odd, but it is more accurate than Risser). Since my daughter was more skeletally mature than her Risser indicates, her prognosis was improved. Then of course you have the issue of just what to do with the new information. None of the decisions are easy.

Pooka1
05-14-2009, 06:36 PM
Hi Gardenjen, just out of interest, I applied your formula to my daughter's figures of 2 years ago.

Cobb angle = 38 - (3 x Risser score) 0 / chronological age 9 = 4.2r

Have I done it wrong or am I missing something?

Laura

The order of operations is Parentheses, Division, then subtraction.

So the answer is 38 - (3 x 0)/9 = 38 - 0 = 38% chance.

For my daughter it is (average of 40 and 36) = 38 - (3 x 2.5)/14.5 = ~37% chance

Strange equation. There is something wrong with it. Can someone check it?

Pooka1
05-14-2009, 06:44 PM
study (http://journals.lww.com/spinejournal/Abstract/2009/04010/Curve_Progression_in_Idiopathic_Scoliosis_.11.aspx )

Conclusion. Initial Cobb angle magnitude is the most important predictor of long-term curve progression and behavior past skeletal maturity. We suggest an initial Cobb angle of 25į as an important threshold magnitude for long-term curve progression. Initial age, gender, and pubertal status were less important prognostic factors in our study.

RugbyLaura
05-15-2009, 03:01 AM
So the answer is 38 - (3 x 0)/9 = 38 - 0 = 38% chance.



I see (maths was never my strong point :D ). Clearly this is wrong??!! a 38 degree curve at 9 has a 38% chance of progressing? We have always been told that her chance of progressing is as near to 100% as you can get.

Pooka1
05-15-2009, 06:47 AM
I see (maths was never my strong point :D ). Clearly this is wrong??!! a 38 degree curve at 9 has a 38% chance of progressing? We have always been told that her chance of progressing is as near to 100% as you can get.

No I didn't mean the 38% was clearly wrong for your daughter. I have no idea if that is correct.

What I mean when I say the equation is wrong is that if you try various combinations of angle, Risser, and age you don't get a wide range of risks.

Actually, now that I think of it, that article I recently posted suggests that initial Cobb is a best predictor and that's basically what the equation shows. You can't get big numbers with the equation unless you start with a big angle.

There is something wrong.

concerned dad
05-15-2009, 10:44 AM
GardenJen was missing a paranthesis and substituted the wrong term (it should be progression factor)
from this (http://www.scoliosisjournal.com/content/1/1/5/figure/F1) website

the correct formula is:

Progression Factor = (Cobb angle - (3 X Risser score)) / Chronological age

you need to use your progression factor with the graph provided on the link.

My daughter has a progression factor of 2.71.
Using the graph in the link suggests 100% risk of progression #$((*# (Expletive Deleted)

RugbyLaura
05-15-2009, 11:40 AM
Thanks for that CD, you really are fab at interogating the www!

Immi's worst reading (of 38 at age 9), was off the scale at 4.2.

Latest measurement takes her down to somewhere in the 90s. Yay! (I know, I know, I won't get too excited as this was an in brace measurement and therefore not valid :( )

mbellcamp, when will your daughter be getting the brace?

concerned dad
05-15-2009, 11:46 AM
And apparently is to be used during the growth spurt as the text says

The estimation of the prognostic risk to be used during pubertal growth spurt (modified from Lonstein and Carlson [33]). The numbers in the figure indicate the number of cases that each data point is based on. Note the small number of cases on which the upper margins of the graph are based. Lonstein and Carlson's progression estimation formula is based on curves between 20 and 29 degrees

Why age would factor into it (or Risser for that matter) I dont know. Risser is 0 during (at least most of) the pubertal growth spurt. I mean, if you are Risser 4, you're not in the pubertal growth spurt. Nor are you in the 'spurt" if you are 18.

Edit - I posted this simultaneously with Laura's post above. I know it posted. I saw it. But when I went back to see Lauras post it was gone. I used IE to go <back> and got to this point to repost. Interesting aspect of VBulletin

Pooka1
05-15-2009, 12:23 PM
GardenJen was missing a paranthesis and substituted the wrong term (it should be progression factor)

I KNEW IT! There had to be something wrong with that formula.


from this (http://www.scoliosisjournal.com/content/1/1/5/figure/F1) website

the correct formula is:

Progression Factor = (Cobb angle - (3 X Risser score)) / Chronological age

you need to use your progression factor with the graph provided on the link.

My daughter has a progression factor of 2.71.
Using the graph in the link suggests 100% risk of progression #$((*# (Expletive Deleted)

Okay using the correct formula, my kid has a progression factor of:

PF = ((38-(3*2.5))/14.5 = ~2.2

So she has ~95% chance of progression. Hmmmm. I guess I'm not surprised.

leahdragonfly
05-15-2009, 11:18 PM
Wow, my daughter's progression rsik factor is (way) off the chart at 4.5--

Maybe that's why our local (non-Shriner's) pedi/ortho told me it doesn't matter if we brace her or not, because she WILL progress and need surgery.

Thank goodness for VBS and other alternatives at Shriner's Philly--they represent our best chance to avoid a fusion for our daughter.

mbellcamp
05-15-2009, 11:51 PM
Thank you all for your replies with concern and advice. It means a lot. So much more to consider and new info to research. Math calcs, yeah. :)

Thank you Stephanie for your words of wisdom. I was trying to choose my words carefully and interpret the several different versions we got from a few doctors and the internet describing the initial phase kids go thru with the brace. Our intentions, as well as the others I am sure; is to give as much encouragement as possible. We will definitely have her sign up on the kid forum.

The ER doc must not have noticed anything, because she didn't say anything; but then again, no one suspected anything at that time and we were thinking it was more lung related. No harm no foul, I guess since we discovered it on our own less than 2 weeks later.

Her pain is really minimal and just occasional. Sometimes the backpack aggravates it or just sitting wrong. So we are hoping, if there will be surgery it will be because of the progression and not early, because of any pain related difficulties.

Interesting about the Risser details. We will have to look into that and ask them more on her stats.

Just a random pick out of our HealthNet provider list we ended up seeing Dr. A. Aminian for the initial consultant. After the visit we found out he is Head of Pediatric Ortho Surgery at CHOC (Childrens Hospital of Orange) so we think we luck out there. We just heard of Dr. Picetti on Tues, who is associated with Sutter Hosp in Nor Cal, so we can keep that info in the back of mind as a second option. From looking at it, I'm not sure our daughter would fit their criteria for being qualified for that type of surgery.

Good to know about the skeleton maturity rate. Something we can compare.

Our brace fitting app't is Monday so after a little (a lot) researching this weekend we should be ready. Just the info you all have given now and before on your other posts in this forum have helped immensely. Knowledge is powerful; but of course, as the old saying goes; ignorance is bliss. No wonder our grand ancestors were please if they were just going to see the bright light!! :)

You all are wonderful. This reply is a little disjointed as I was trying to answer everyone's individual concerns and questions. Thank you all again.

Matt and Trish, parents of Cortneanne.

Knowing that we are in God's hands.

Pooka1
05-16-2009, 07:31 AM
Thank goodness for VBS and other alternatives at Shriner's Philly--they represent our best chance to avoid a fusion for our daughter.

It certainly seems that way. It definitely might pan out. I would try VBS if I had a JIS kid.