spinecor

[Sherie]

Hello all

About in-brace xrays, it's my understanding that in-brace xrays are required to see how much correction is being achieved, 50% is desired in order to hold the curve. Am I way off base here?

I do agree that being out of the brace for >24 hours is desirable for out of brace xrays. My daughter had a 10 deg. difference in out of brace xrays taken immediately after and one week after. Don't let them xray your child if they've just taken the brace off, that's uneccessary exposure.

As far as trying different treatment options, that's only something the parents can determine, it's their child and ultimately, they're the ones who have to live with their decision. While so far, my daughter is ok, I would have done anything (and did try many treatments) to prevent fusion surgery, it's final and irreversable. Having a long fusion will impact her life and I still can't say I'm happy about it. I will always have an extra degree of worry, but maybe that's just me.

In my opinion, this forum should be a place where we can share our experiences, be it good or bad, so that others can make their own informed choices. We should not be criticizing anyone's decision, that's very personal and we already feel enough guilt over what our child's going through. I've been criticized in the past over some of my choices and it really hurt. I hate that there is so much bickering lately because this used to be such a great place to find support and comfort.

Best wishes to all and let's all be hopeful that whatever treatments we choose, that they will be successful for the kids, it's about them after all.

[flowerpower]

Well said, Sherie.

Renee

[WNCmom]

Just to add some of my experience with SpineCor: My 12 yo son had a 45T curve and complensating L curve after being in a Boston brace for 6 months--he progressed during that time (a growth spurt). Our ped. ortho at a teaching hospital in Chapel Hill NC didn't tell us about SpineCor or anything else, including VBS, and wasn't even very enthusiastic about bracing, but I think he felt he had to do it.

I wish we had known about SpineCor when the curve was 30-35! When it reached 45, our ortho essentially told us there wasn't anything more to do but watch and wait and wear the brace and pray. So, I found this forum, did some research, and we decided to go for it. The closest provider who fit the SpineCor brace was a chiro in Atlanta. He was clear with us that chances of stopping or reducing it were about 50/50 with such an advanced curve. We felt we had nothing to lose (and still didn't know much about VBS) at that time, so we switched. Sidney's curve has progressed some over the last 6 months. In May we are going to try intensive therapy to see if we can reduce it. If it works, we will consider VBS if he is eligible. Our short term goal is to delay fusion at least until he stops growing--we anticipate he has a foot more to grow.

Would the curve be larger if he wasn't wearing Spinecor? We'll never know. But if he had been put in Spinecor 18 months ago when we discovered the scoliosis, I believe there would have been a much greater chance of reducing the curve, and it might be smaller now. If I could do it over, knowing what I know now I would have used Spinecor first.

As for in-brace x-rays for SpineCor, my understanding has always been that if the curve progresses, it will show up on the x-ray in-brace. That has been our experience, unfortunately. He will have an out-of-brace x-ray in May for a base-line before we begin therapy.

Our entire first appointment to fit the brace, with out-of-brace (for 3 weeks!) x-rays and in-brace x-rays, the exam, and the brace itself, cost us $4300. Our insurance covered all but $600 of it, because of course the chiro is out of network. The brace and all its parts are guaranteed for two years--he would have needed at least one new Boston brace by now anyway, because he's grown so much. We don't regret our decision. Sidney can be so much more active now than he could be in the rigid brace. He realizes that, and he wears it (mostly) without complaint. He's a trooper.

Mary Ellen

[RugbyLaura]

Re out/in brace xrays. My understanding is that yes, the out of brace xray is not a measure of where the curve is unless it is taken after a period of some days without the brace. However, at Imogen's stage of treatment the measurement out of brace is not the important one. At her last appointment the xray was taken without brace at the request of her consultant. The orthotist said at his appointment (immediately after the one with the consultant) that we could have another in brace xray taken but that it would not be very different to the out of brace as he had not tightened the brace much and her spine had not had time to move before the out of brace xray was taken. (Sorry - does this make sense? It does to me!) I have not mentioned that the 27 degree xray was out of brace for this reason. I am not saying that this is a true picture of her curve and that she has a permanent correction. Mr Mills (orthotist) is only really interested in her in brace xrays at the moment.

In June Imogen will be having in & out of brace xrays. I will ask questions again then & try to post the answers promptly - before I forget the detail.

Incidentally, Mr Mills measured her curve on the last xray to be 25 degrees (not 27) but I have gone with the most pessimistic measurement (that of the consultant surgeon).

[mariaf]

So let's try to keep our emotions at bay, and just "state the facts" and information as best we can, without resorting to written "shouting matches"... I know when something is near and dear to us, our emotions can be ready to burst open with the slight provocation. It's good to share, good to see different ideas of treatment, and even good to have constructive (helpful) criticism, but presented in a caring manner. We can all do that if we try.

Hi Susie,

I agree with you - however, most of what has been going back and forth ("most" not all) HAS had to do with differing facts as well as opinions. It's not like folks are name calling or anything. Sometimes the written word is interpreted a bit differently than if it were spoken in a calm tone.

I think we NEED to address issues where we feel something isn't accurate or might be misleading - just to ask for clarification. It's in everyone's best interest.

I, for one, wouldn't want the forum to lose people who are willing to state truthfully what they may have learned or experienced and end up with a bunch of nice people who are just going to "yes" each other to death and NEVER question anything. What good would that do in terms of sharing information? Who would learn or benefit from that?

Just my honest thoughts.

Take care,

[mariaf]

I am not saying that this is a true picture of her curve and that she has a permanent correction. Mr Mills (orthotist) is only really interested in her in brace xrays at the moment.

That is the part I do not understand. If an in-brace x-ray is not a true picture of the curve AND if there are some kids who are ONLY getting in-brace x-rays while in Spinecor, that could be dangerous in terms of catching progression early.

Whatever our differences of opinion on treatments may be, I would NOT want that to be the case for your daughter or for any child, to be progressing while the parents had a false sense of security because in-brace x-rays were not showing an accruate picture of what was actually occurring.

[RugbyLaura]

Maria,

Perhaps I phrased this badly. Obviously the xray is a true picture of her curve at that moment in time. It MAY not be a true picture of where it would be after some time out of brace. Our medical professionals are treating Imogen with Spinecor primarily to avoid early fusion. If her curve had continued to grow at such an alarming rate she would have needed surgery at a very early stage of maturity. This would mean the risk of crankshaft and make surgery more complicated. She would also end up with a short torso and therefore be of small stature. She is only just over 4'6" at present. She only has a small chance of avoiding surgery but we believe that Spinecor gives her the best chance of any option available to us.

My understanding is that the theory behind Spinecor is that it teaches the body to carry itself in a different way. This is normally achieved within 18 months. With a child of Imogen's age it will take longer as it needs to carry on until a while after puberty.

If/when Spinecor ceases to be effective at holding her curve it will become apparent in the in brace xrays. This will not mean that Spinecor has failed for her as it will have bought her some inches. Her consultant surgeon uses Spinecor during progression to 1) slow the progression as much as possible and 2) allow the spine to remain flexible in order to achieve as good a correction as possible at fusion. Flexibilty is not maintained with a rigid brace.

Is this any clearer? I will try to get more info at the next appointment.

Laura

ps - as I have stated before, I am not entirely anti VBS - it is not an option over here.

[Susie*Bee]

Maria-- I am in total agreement with what you said about the need for sorting out information and sharing opinions. I did not intend to say we should in some way "Pollyanna"ize the forum, or be like ostriches hiding from the truth. I am saying that there are nicer ways to share information than frontal attacks, which is how some of it came off. Again, that poster probably did not intend to sound that way, but it sure came off like that--at least to many of the readers. And this was directed at a new member and her first posts, seeking information and help.

[jillw]

Christine, thanks. I have noted your daughter's fluctuations and am hopeful it will be the same with Katie.

Regarding Xrays: I don't fully understand why an occasional out of brace Xray is not taken. I have a simple answer; I plan to have out of brace xrays taken periodically. I understand the relevence of in brace xrays for comparative purposes, but I have not been told that her in brace xrays are an indication of her actual curves (nor would I believe it if somebody told me it was...which they haven't). Instead, I was told a progression in an unbraced spine would also show by a progression with "in brace" xray readings. Nonetheless, I will periodically "test" that statement by having out of brace xrays also taken - probably shortly after her next appointment (which will be 1 year since her scoli diagnosis). I plan to go a full week without brace before an out of brace Xray because that is what Dr. Rivard has recommended. With spinecor, he doesn't believe only a day or two out of xray is enough to reflect the true out of brace curve.
Depending on what the out of brace xray reveals (and the size of my daughter's curves at the time), I will either increase or decrease the frequency of out of brace xrays.

I haven't yet seen a perfect solution to juvenile scoliosis. It doesn't exist. We do the best we can with the options that are available. Thank goodness for these forums which made me aware of options other than a milwaukee brace 23 hours a day for my daughter for the next 9 years (or to just wait and hope that if her curves did progress, that it would be a small enough progression to work with and not a big jump like many others in similar situations have experienced). Unfortunately for those with children who were diagnosed with juvenile or infant scoliosis, there is not as much research. The SRS criteria state that results related to those with juvenile scoli should not be included in published papers. That is infuriating to me. I understand they are a different animal and massing JIS results with AIS results could be misleading. However instead of throwing out results related to JIS, they should be reported separately in my opinion. So I muddle through the best I can. In the short term, my daughter's spine is being held in a position with a 68% smaller curve. I like that. I view that as a success. Will the success hold? I dont know - frankly I'd be surprised when she hits her period of rapid spine growth at 9 or 10 if her curves didn't progress. If spinecor doesn't hold the curves will I re-evaluate treatment options? Absolutely yes. Will I view spinecor as a failure? Not if it reduced my daughter's curve by more than 50% for some period of time. It will have done the job that any other brace out there could have done without as much of the pain and heartache. Is this a short term solution or long term solution for my daughter? I just don't know. But like just about every other parent I've seen on these boards, we make a decision for treatment and periodically re-assess and re-evaluate based upon results.

I don't think many view this as a spinecor vs. VBS issue nor do I feel that issues are sugar coated in any way shape or form on this forum. Spinecor is not an option or good choice for some just as VBS is not an option for some and not a good choice for others. Both treatments seem well suited for the JIS segment who are otherwise faced with close to a decade of hard bracing and even then may very well need fusion (although both treatments are not limited to JIS individuals). I can't wait to see more recent results published on VBS because the number of patients who have received the treatment to date is exponentially larger than the 39 patients who were reported on in 2005 and it sounds like Dr. Betz & co have been experiencing some great initial results. Furthermore, by now they would have results with a longer than 1.6 year average post op time period. (which given my daughter's age is relatively meaningless; in cases such as hers at least 6-7 years post op would be more relevent). I suspect updated results will show that VBS is at least as successful as hard bracing and probably much more so. By the way, maybe more recent results have been published...I saw a 2007 report, but it didn't add new results. If there is something more recent which I have missed, please let me know!)

thanks

[jillw]

Theresa,

In Montreal we paid US$3300 for the brace, 3 bodysuits and the consultation fee. Additionally, xrays were 325 canadian dollars. This was 10/07. I dont have the receipts for MOnday's visit, but the xrays were similarly priced I believe and we paid US$100 for the dr. appointment/fitting.

[shaes mom]

Hello everyone,

First, I wanted to apologize for my behavior yesterday. I felt attacked. The worst part was, I didn't know why I was being attacked. I responded in a negative way and I should have known better. Anyway, I've made the decision to not respond to what I feel are negative posts. That's not why I came here.

Shae was diagnosed at age 9 - she's now 11. I've been reading the forums for a while. I tried to sign up a while ago so I could post and I must have done something wrong because it was never finalized. Anyway, I'm on now and I know everyone out there for the most part is supportive and caring. So I do want to thank all of you for all the information you have shared. I really don't have an opinion on any of the options. The only thing I know is I want my daughter to be as comfortable as she can be and where her curves are pretty minor compared to others I feel it's best right now to try the Spinecor first.

I truly wish everyone the best possible outcome with whatever choices you make.




Deshea,

Thank you, I did get your email. I got it last night but couldn't print some of the attachments so I printed them this morning. I actually talked to HP today and they told me the brace would be covered at out-of-network costs ($500 deductible and 80% coverage). Once I spend the max of $1,500 however, everything would be covered at 100%. So we will go forward and make an appt. with Dr. Rivard and deal with appealing the out-of-network thing later.

By the way, do you have Dr. Rivard's phone number? Do you know how long it takes to get your first appt.?


Theresa

[desheah]

hi theresa,

i'm glad you're back and taking deep calming breaths (as we all are!). that's great that harvard has given you more info. don't be surprised though if you still have to do an appeal after you submit your claim!

dr. rivard's # is 514/345-4839. he sometimes answers the phone or dr. coillard so don't be shocked. more likely, you will leave a voicemail and Joanne Lavigne will call you back. FYI -- their fax # is 514/345-7754. I've used that one often.

i don't remember how long it took to get an appointment since it was almost 2 years ago. for follow-ups, i call the month before we're due and get the appointment the following month. of course, the initial consultation does take longer.

also, as an aside, i'm not sure when the passport rules take effect, but do you have a passport for your daughter? i *think* it is in june that you will absolutely need one to get over the border so take that into account.

my best,
deshea

[desheah]

another post from me to say -- amanda, what a wonderfully detailed post on vbs. i'm glad that theresa and anyone else coming to this thread will have a better idea of what it is and your thought process on why you chose it for lorena. thank you for doing that!

my best,
deshea

[desheah]

My understanding is that the theory behind Spinecor is that it teaches the body to carry itself in a different way.

i wanted to also try and "discuss" the whole in brace x-ray versus the out of brace x-ray. first and foremost, i am a parent and not a medical professional.

second, a slight history of where i'm coming from, lucas wore a tlso from 18 mos to 2 1/2 yrs old from children's in boston. first fitting, he had x-rays in the brace. a month later, tightened the straps and another x-ray in the brace. next check up out of brace x-ray after 24 hours. slight modification to the brace. outgrew it in 6 months, had a new one made, but never had an in brace x-ray. i begged for in brace x-rays. no. the only way to see how the curve is responding to the brace is to do out of brace x-rays. BUT what if the brace is pushing against the curve where it should be. "we can tell". uh huh. in addition, we were being conservative and had lucas in a charleston night-time bending brace and the tlso during the day. 50% correction during the day and supposedly over-correction at night. we thought we were so smart! of course, it didn't help that the ortho would not do an in brace x-ray for the charleston. "we can tell." uh huh. lucas progressed. we went onto casting. (another very long story . . .)

okay, so there is my bias. i want an in brace x-ray to see that the brace is working. with the spinecor you will not get 50% reduction in the curve. it is not a hard brace. that is not the way that it works. it is making your child's body move in a way to correct the curve and making the muscles do the work of maintaining the corrective movement. it is an active "dynamic" brace. it is not squeezing the child, exerting pressure through the ribs to correct the spine and in the process causing rib deformity and muscle atrophy.

on another note, i did ask dr. rivard for an out of brace x-ray. he doesn't want to do it now. i'm okay with that for now. we're in this scoliosis game for the long haul. if lucas' numbers stay pretty stable in the spinecor, i feel that it is stable out of brace. if the numbers continue to go up, i will re-evaluate our options. that is one of the reasons that i had lucas seen by dr. hresko at children's in boston. he does vbs. if lucas' scoliosis is relentless and the curve progresses, then it is not necessarily a failure of the spinecor. this would happen with any brace (in my opinion). but then we have given bracing a try. just like we gave casting a try. i'm willing to try anything and delay surgery for as long as possible BUT surgery is not out of the question.

for now, lucas is in the spinecor, and i need the support of other parents who have chosen the spinecor for their children. i need to know the ups and the downs. as someone else mentioned, nothing sugar coated.

i hope this makes some sense, and i hope this helps facilitate constructive discussion on the topic of brace x-rays.

as always, my best,
deshea

[shaes mom]

Deshea,

You're my life saver this week. I hadn't even thought of passports. My husband is the only one who has one. Oh boy, best get moving!