spinecor

[emarismom]

Ruth,

I'm seeing Dr. Savedoff in Miami. Originally Dr. Oulette from Atlanta braced her and Dr. Savedoof has been following her as he opened his office just a few miles from my house. I took her in three months ago and he readjusted the brace, but I did not have an xray done. I have been very careful when I have washed the brace to put it back together exactly as he adjusted it. The part that seems to have caused the trouble is where the shoelace is in the back. It wasn't tight enough. But I haven't even untied that part at all. I have washed it by hand. I have been meticulous to put the thigh bands and the crotch straps exactly where the line was drawn.

I do know that Emily does pull on it, but I didn't think she could make it go up to high, as the thigh bands and crotch straps should have been holding it in place. She isn't able to untie the shoelace part, and there is noone who would have loosened it for her. I really just can't believe it, and I've lost time.

I've decided I will email a picture of the brace to the doc every week after I wash it and we put it back on. Then once a month, I'm going to stop by to have him look at it to make sure it is fine.

We are also going back to the orthopedic to see what he thinks. Of course, he doesn't think she needs a brace at all yet, so I don't think he will say much.

The hardest part is that visually she DOES look better. She has no tilt in her shoulders now. Her hips are almost even. They are definitely more even than they have been since her original diagnosis in 9/04. Her rib hump looks smaller and her overall posture is much improved. But as soon as I saw the xray, I knew the curve had increased (even before he read it). Can someone tell me how she can appear so much better, yet really be worse?

[Celia]

Cheryl,

I read your news last night and I couldn't bring myself to type anything because I know words can't comfort the anxiety and dread you feel for your daughter. I'm still in shock that the curves could have progressed so quickly. You have our collective shoulder to lean on anytime you need it.

[Celia]

Michelle? (Emily's Mom)

I'm sorry the news wasn't better for you. The doctor said the brace wasn't being worn properly? After he made adjutments to the brace did you find out if the curve is back down to levels of three months ago?

[gerbo]

Cheryl, I am sad and upset for you and your family and have my own fears and anxieties multiplied. I know you have a great religious faith and get lots of strength out of that; I sincerly hope this will continue to support and sustain you. (((sometimes I just hate words on paper (screen) because they seem so empty and meaningless in situations like this!! )))

In all honesty I would have to think very long and hard if I were in a similar situation next month what to do next. I have always said to myself and L that "the only other option" if it came to it, (besides the "new kid on the block; stapling" and surgery) would have to be a hardbrace, like the Cheneau, but only if it would give lots of initial correction. Considering that option (and i now more talking about my self) would have so many implications (practical on where to get a "good" one, and psychologically how L would cope with it) and ofcourse the lack of garantee it would work, that I don't know what in the end I would do.

Cheryl; we all care for you

gerbo

[AILEA]

Cheryl, I’m so sorry you got those results..

I know what you feel; I was nearly in the same situation time ago, when we realized spinecor was not working for my daughter. Should I suggest you to have one’s eye on Cheneau braces? I know you didn’t get good results with the boston, but our orthos usually put boston but when the curves are too high (as in my dd´s case) he works with the Cheneau brace.

I think Spinecor is a very good option when the child is still young, with flexible and medium-sized curves, but when they are older, and their curves are becoming less flexible, perhaps there are other better ways to try to keep that curves. There have been several cases in this “spinecor thread”: Pola, Melissa, Latginer, now Cheryl with those “not good” results…and it hasn’t been a crowded thread

Of course, life is quite different wearing the spinecor or a hard brace, I know, my daughter has wore both, but I’d like to point this because sometimes I regret I put my dd in the spinecor and I wish someone had told me be more careful due to her age.

Best wishes

[gerbo]

ailea; how is your daughter doing?

I think Spinecor is a very good option when the child is still young, with flexible and medium-sized curve

but in all fairness; cheryl's daughter was relatively young, and had a great initial reduction (so enough flexibility), there was nothing to indicate it wasn't going to work???(up till last 6/12)

I wish someone had told me be more careful due to her age

but who and how?? We are all so dependent on the knowledge and facts and opinions and facilities available, which is so variable and different dependent on who you talk to??

[RugbyLaura]

Michelle & Cheryl. Horrible news. As Gerbo said, it's so hard to find the words to express our support & compassion. We are all with you on this journey & you are very much in our thoughts & prayers.

Cheryl, hugs to you XXX. I have nothing practical to say as you're further on up the road than we are (although I'm sure we WILL be following you). I'm sure you'll remain strong and will always do your very best for Rachel. How does Rachel feel about it all?

Michelle. I feel the same as you; that Immy's back looks so much better recently. We have her 6 month review on Monday. I think it's less obvious to us partly because we have become used to it and partly because we are much less anxious (so not building it up in our minds). I really feel for you as you have been so good with the brace & washing routine. I stick Immy's in the washing machine on a 'normal' wash, 40 degrees, 1400 spin & tumble dry (!) & it seems fine. Immy is in shows at the moment so only wears it for 18 hours a day (at best - when there are matinee performances it's more like 14 hours). My husband always says "Expect the worst but hope for the best" so we expect her to need surgery one day. In the mean time I strongly believe that she's got to have an enjoyable life.

Love to all,

Laura

[Celia]

I have always said to myself and Lisanna that "the only other option" if it came to it, (besides the "new kid on the block; stapling" and surgery)

Gerbo,

Even in the darkest of moments you always have a way with words that makes me smile and sometimes laugh out loud. You're the best!

[gerbo]

just to make sure we all agree; i think there is something quite exciting and inherently logical about this stapling approach, and I know Celia thinks on similar lines........

[mariaf]

Gerbo,

I think we all agree as well that some of the newer approaches - be it surgical (i.e., stapling) or non-surgical are more appealing to some folks than their traditional counterparts (hard bracing, growing rods, etc.)

I always say that choosing a treatment for scoliosis comes down to whatever a person sees, for them and their child, as the lesser of the evils.

A lot of us who chose to go with the stapling, while not happy about our kids having surgery, did so in order to avoid the alternatives either in the immediate future (years of bracing) or down the road (growing rods, fusion, etc.).

Unfortunately, for all of our kids, there are no perfect options - I wish there were.

[jillw]

Cheryl, Is she still wearing spinecor or have you taken her out of it so you can get out of brace xrays?

Some of the comments you all make are interesting because Spinecor seems to work best on those with milder, flexible curves which is often with the younger children. However Dr. Rivard had told us that despite the good initial results, the tricky/tough part will be the peak velocity growth spurt (i.e. preadolescent/early adolescent). We're still several years away from that and anything can happen in the meantime, but I wonder if Spinecor (or anything for that matter) is "strong" enough to hold a curve when one is growing inches in a matter of months. I think the ideal candidate would be someone who starts out with curves in the high teens when they are something like 11 or 12 and have already had the initial burst of rapid growth but only have mild curves after it.

I've wondered if maybe wearing a hard brace at night and spinecor by day would be more successful for those going through rapid spine growth? I assume that would not be supported by the spinecor folks, but have been thinking (depending on how things go in the interim; i don't know what kind of progression she will have first) that I may raise that question down the road.

[gerbo]

agree, don't know though whether this is by choice (i.e. I considered the options and decide to do this or that) or by default (i.e. I take the route I do, because this is what my doctor has advised me to do and I do not know about anything else)

sometimes you just wish that somebody would just take you by the hand, sit you down and say; just do this and you'll be OK.

all this thinking and considering and deciding and wavering and doubting and reconsidering can get very exhausting......

at the least the company is good (if not a bit lively and excitable at times)

edit; this is response to Maria's post, Jill's slipped in between

[gerbo]

I've wondered if maybe wearing a hard brace at night and spinecor by day would be more successful for those going through rapid spine growth

been thinking this before as well, might have to revisit it at some stage.....

[mariaf]

I think the ideal candidate would be someone who starts out with curves in the high teens when they are something like 11 or 12 and have already had the initial burst of rapid growth but only have mild curves after it.

Hi Jill,

I think that if a child got PAST their adolescent growth spurt and ended up with a curve in the high teens, then they should have a very good chance of avoiding fusion no matter what the treatment (hard brace, spinecor, etc.). Reason being that if there was not much growing left to do, the curve most likely would not increase much anyway.

Of course I don't see ANYTHING at all wrong with your idea of asking about a hard brace at night in addition to Spnecor during the day. There are even some nighttime bending braces made specifically to be worn only during those hours. Of course, this could be contraindicated for Spinecor which is why I said it's a good idea to ask your doctor.

Just my thoughts

[mariaf]

agree, don't know though whether this is by choice (i.e. I considered the options and decide to do this or that) or by default (i.e. I take the route I do, because this is what my doctor has advised me to do and I do not know about anything else)

Good point. Being as determined and stubborn as I am, I sometimes forget that there are folks who might actually just do the latter.

That's why forums like this are great - they get information out there regarding all the options to be considered.