spinecor

[mamandcrm]

Hi Laura,

I just wanted to let you know that I, for one, really appreciate your candor with both the good and the bad, and I'm sure others do as well. We are all trying to make decisions based on very murky information and the experience and reporting of people who are trying various devices/methods is invaluable. So thank you.

[concerned dad]

I also feel very about guilty voicing my doubts on a public forum - Spinecor has been wonderful for Immi; her life has been much more bearable than it would have been with the rigid alternative. I don't want our experiences to put people off - but I do think that we have a duty to report all experiences; good and bad.

Ditto that for me.

[samsdad]

Sam's brace fitting

Samantha had her brace fitting last Thursday, May 7th, in Montreal with Dr. Rivard and Dr. Coillard. The trip went well. Getting to and into Montreal from NJ was no big deal. It is about 420 miles.

Going into this appointment we were assuming that Samantha’s two thoracic curves were both structural, which we understood would have made this brace less effective in stabilizing or correcting her curves. We got some really good news when Dr. Rivard told us that her middle right thoracic curve (apex at T8) was structural but that the upper left thoracic curve was a compensatory curve. It was actually sweet how genuinely excited Dr. Rivard was to find this out and tell us the good news. He seems really relieved and more confident that the brace could help.

Out-of-brace her curve measured 24 degrees, in-brace it measured 12 degrees. My daughter is adjusting pretty well to the brace, though somewhat uncomfortable at times and a bit of a hassle to fit into her daily routine. You all know the routine; we go back to Montreal for an initial evaluation/adjustment in 5 weeks (June 11th) and then we will go back every 5 months for the same until treatment is done. Now I have to see what Aetna will cover – I’m pretty sure there is a clause about not covering out-of-country treatment, though I’m hoping the brace itself may be covered.

We do have some questions about the brace fit/comfort to anyone with experience that may be able to answer.

- Initially Sam was walking like a cowboy, all bow legged, saying the thigh and crotch bands were uncomfortable. She has gotten used to them being there more since last week, but occasionally walks a little stiff legged or wide. She also tends to bend with her legs wide to pick something up. Is this an indication that something is not fitting right or will she simply get used to it and start walking/bending more normally.

- She played her first softball game in the brace on Monday night. She had no problem throwing or swinging a bat that I could tell, though again her running and bending was stiff. Thinking about it after, I can understand how her running stride could be hindered since her thighs are tethered to the brace’s base. She was supposed to have “full range of motion” in the brace – does that include all out running? Again is this something that she will simply get used to or is it an indication that something is not fitting right?

- When Sam unsnaps the crotch bands and sits to go potty it seems that the base rides up little. This seems apparent because when she goes to re-snap the crotch bands they are tighter. We have been trying to re-shift (push down) the base lower on her hips (it will only move slightly) before re-snapping the crotch bands and that seems to do the trick. But, is it normal for the base to ride up slightly when the crotch bands are unsnapped and she sits to go potty?

- This morning for the first time Sam woke up with some red marks caused by, I believe, her crotch bands. I assume the brace rode up during the night. How tight should the crotch bands be between her legs? Should they touch her skin or should they have some slack so as not to touch the skin between her legs?

Finally, thanks all for the conversation above regarding the Spinecor potentially aggravating upper compensatory curves. Since Dr Rivard declared Sam’s upper curve non-structural he did not even give in or out of brace measurements on it. I know from Sam’s initial diagnosis in April that the upper curve was measured at 19 degrees. I will do what I can to research this concern and certainly ask the docs in Montreal about it. I think I will insist that they track the upper curve measurements as well.

[CAmomof2]

samsdad,

The way you described your daughter walking / running etc. sounds normal to me. It is the way our daughter reacted too! She will get "use to it" with time. The crotch straps should be a bit loose. They should not rub her skin, and yes the base does ride up and we were told that it is normal and not to worry. Feel free to ask any more questions... S.

[christine2]

Excellent news Samsdad

It does take a bit to get used to, my daughter is even able to do cheerleading in brace, her back bends need a little work but she is getting there. My daughter has a small compensatory curve. I don't think it has ever been measured either. I watch it at every x ray and don't see a change in my eye but will watch it also.

My daughter does not undo the crotch snaps at all. She discovered this herself. No problems so far. We also had some redness from the crotch bands there is actually some thickening of the tissue in that area now so she is not bothered by it. I was told by (not sure who) that you can criss/cross the straps too.

[RugbyLaura]

Hi Sam's Dad,

Immi did walk like a cowboy to begin with, but soon got used to it and now I sometimes can't tell whether she's wearing it.

Immi had problems with the crotch straps rubbing in the early days. The skin has toughened up she's had no more problems in that area. They should not be really tight though - the pelvic base should not be using them to remain in place.

Movement will become easier and more natural in the brace - but, in my opinion, there will inevitably be some loss of freedom / flexibilty / extension because of the brace. Immi takes hers off for 'important events', ie when she wants to be able to run at her fastest, etc.

Glad Sam is getting on well.

Laura

[jillw]

Wonderful news that the high the other curves are not structural! And that's a great initial correction. If you check my signature you'll see that we had similar initial results and then it went down even further a month later.

Ditto the cowboy walk with Katie. It does get better, but even to this day she does walk a little bit different.

I thought the crotch straps would be snug...even if they had been set looser, the pelvic base would then ride up higher as she moved, thus making the crotch snaps snug again. That is the "problem" area for us. It's not a huge problem, but as Christine mentioned, there is some thickening of the tissue . I have read of similar issues with TLSOs, and the advice there is NOT to put soothing lotions on the trouble spot because it softens the skin instead of making stronger. For the hard braces I have even read recommendations of putting rubbing alcohol on trouble areas to help the skin toughen up quicker (but I didn't do that for my daughter given how close that area is to parts that I wouldn't want exposed to rubbing alcohol). We generally try to do less, so her body could adjust, but there are times when it seems extra sensitive and then we put a big bandaid where the strap hits to lessen the rubbing. - maybe when your daughter will be doing a lot of running it and has multiple games in a tournament it might make sense to protect that area with a bandaid or moleskin. My daughter has been running daily half miles in gym class recently (trying to beat a time so although not a sprint, it's pretty much all out running) and she has been OK (so far at least) Her skin around there , though, is always pinker than the other areas.
I'm just re-reading your post...in your fourth bullet point did you mean the thigh bands rode up? Or was it the crotch straps (which are already right up there)? If the former, the thigh straps were a bit of an adjustment at first, but they don't bother her at all anymore (altlhough if you look closely she also a little pinker in that area as well)

But overall, over the next couple weeks I would expect her to become more natural with her movements while in the brace.

[Mom_15]

Last year we switched from the Boston Brace to the Spinecor brace. We were not seeing any correction in the Boston Brace, in fact the curve progressed. Since wearing the Spinecor brace, we have seen consistent improvement in both curves and rib displacement. In addition, her quality of life has improved. The Spinecor brace is less noticable under clothing, and allows for more freedom of movement.

We highly recommend the Spinecor brace over the Boston brace.

[jillw]

Hi Mom_15, Welcome to the forums. I saw elsewhere that you posted your daughter has a checkup coming up...good luck! I'm glad to hear spinecor is working for your daughter.

I'd love to hear more about your experiences. How old is your daughter currently? How long has she been in the various braces? How large are her curves currently (and what were they in the past). It's always nice to have new input here. I'm guessing you don't go to Dr. Rivard since you go in for more frequent checkups than they do - do you have to travel far for her treatment?

[Jenmom]

Done growing!!

Hi everyone,

It has been some time since I have posted. Jen went to her appointment with Dr. Chang on Monday and had a hand xray to see if she has stopped growing and he said she has (she is 14 now). He did an out of brace xray and her curve was 17, he did not do an in brace xray. He said at 17 she should not have to worry about her curve as an adult. She has to wear her brace full-time until December and then wean off six more months and she is done. We are very excited!!

Kathy

[CAmomof2]

Jenmom / Kathy,

Wonderful news! Thanks for sharing - it gives hope for the rest of us! What was your daughter's degree of curvature when it was 1st discovered? What age was she? I bet she is counting down the days!! Congratulations! S.

[jillw]

Kathy, great news! I also am curious about how old she was/how big her curve was/etc. How exciting it must be to see the light at the end of the tunnel!

[samsdad]

Sam's 5-week follow-up

It’s been some time since I last posted. Sam just had her 1st 5-week follow-up/adjustment appointment in Montreal. Based on the further correction achieved by some of the younger kids described in this thread we had hoped for some more in-brace correction compared to her initial brace fitting. That didn’t happen, but we are very thankful that her curve is holding at 12 degrees. It’s probably not likely that we’ll see any more correction, but if she can hold under 24 degrees by the time she finally stops growing (like 6 or so years from now) we will be very pleased.

Dr. Coillard adjusted bands 3 and 4 to be tighter. She positioned them further back where they attach to the bolero at her shoulders. This has caused the brace around her shoulders and neck to be a little more conspicuous. It tends to shift closer to her neck on her left side so now you can see the edge of the brace with collars on shirts that didn’t show the brace before, which has been a little upsetting to Sam (and my wife since these shirts were bought specifically to help hide the brace).

Other than that, Sam has been adjusting to the brace better than we would have expected. I’m sure that I am like many other parents on this site who are thoroughly impressed and proud of their child for dealing with this so amazingly well.

It’s taken these 5 or so weeks for my insurance company to finally make a decision (EOB for those familiar) on my claim for the Spinecor brace. Their verdict: Not Approved. Their reason: “Experimental services and supplies are not covered under your plan…” Apparently the only braces that Aetna considers to be medically necessary for the treatment of scoliosis are the Boston, Milwaukee, and Charleston braces. They consider Spinecor, Providence, Copes, and Rosenberger to be experimental and investigational.

So now the long hard, and probably fruitless, appeal process will begin. That’s OK; I didn’t have anything else to do

[christine2]

Good news Samsdad

This post must be quick, getting ready for wrk/school. My husband has been fighting the insurance company for a # of reasons one being Spinecor. He has been very diligent and winning. Don't give up!!!

[RugbyLaura]

Hi All,

Had Immi's 2 year (actually 2 years & 2 months) appointment today.

Curve measured 35 degrees in brace. Sounds bad but is really not too awful. The brace has done a great job up to now and she's still in with a shout of avoiding surgery.

Compliance has been a bit of an issue recently, but we'll have a go at being better for the next six months.

Laura x