spinecor

[concerned dad]

Jill,
if you feel like sharing, I would be interested to hear details about that March 09 out of brace x-ray.
I would have expected (hoped) for a lower number (of course it could have been double that had you never braced I suppose).
How long out of brace and who did the xrays?
Did Dr Rivard offer any comments/analysis?
CD

[samsdad]

Thanks everyone for the hotel information. Plattsburg and Old Montreal sound like the right option for us. We'll look into the Springhill Suites and also see what is available via Priceline.

Did the orthopedist who diagnosed her say anything about getting an MRI?

jillw -- Yes, he prescribed a full spine scan (actually 3 separate scans) just "to be safe". At the time he didn't indicate that he had a specific concern or noticed some symptom, but I figured we'd do it as part of a normal protocol. Then when I called to make the appointment and was told that due to my daughter's age they may need to sedate her (or break it up into 2 or 3 separate appointments) because it would be more than 2 hours in the tube, I had second thoughts. My wife and I decided not to go ahead with the MRI because it seemed to us it was a "just covering my butt" kind of procedure for the Dr. I will do more research on the need for an MRI given my daughter's age and ask the doctors in Montreal what they think. Thanks for the insight.

[jillw]

Hi Concerned Dad,

Sorry- can't remember where I have posted what! Before we got out of brace xrays, we had asked Dr. Rivard what he would expect to see if we did it. Dr. Rivard had said that after 3 days out of brace, they would expect curves to revert to their original level at this stage in Katie's treatment. That is exactly what happened. She went 3 days out of brace and her curves were basically the same. The upper curve was measured at 20 degrees and I didn't write down what the lower curve was at but remember thinking it was also pretty much the same (maybe also a degree different) Dr. Rivard's group have found that curve improvements (which isn't a guarantee but something that spinecor has been found to deliver in some cases) generally don't show until the child has been in the brace longer and is closer to weaning. In the beginning, they used to do out of brace xrays also and this is how they learned that. They stopped out of brace this early in treatment because they were quite confident on their experience that if an out of brace curve was progressing there would surely be an in brace progression as well (and presumably to limit radiation exposure also?). On the other hand, some parents were disappointed that curves were unchanged instead of permanently reduced earlier in the treatment. It makes sense to me that curve reductions in spinecor wouldn't "stick" until after a while....a hard brace can often give a partial correction that will at least partially "stick" after 1-2 days out of brace. However, my understanding is that spines often become less flexible during full time bracing (not sure if that's the case for overnight only bracing). So a hard brace could move a curve into a better position and as the spine becomes less flexible the curve holds (until 2 years or so after bracing ends which is the period I have read it takes for hard braced curves to settle in to it's "true" curve). On the other hand, the spine remains very flexible in spinecor - so you won't have a bit of "stiffness" to help hold a curve in the earlier stages. That's my supposition, anyway. What's interesting is Dr. Rivard says 3 days out of brace. Other docs say 1-2 days. I'm curious if I had kept her out for, say, 36 hours if I would have seen another number. Next time she gets out of brace xrays I might do that just to get a feel for what is going on.
If my plan was to keep katie in spinecor no matter what (even if there was progression), then I don't think I would get out of brace xrays...I'd limit her radiation exposure. However, I do have VBS in the back of my mind and there is a limited window of opportunity there that I wouldn't want to miss so I do want to supplement with occasional out of brace xrays also)

[christine2]

Excellent posts Jill. I have to say I am happy that my daughter is getting most of her x rays in Canada using the Q Scan.

[jillw]

Christine, I fully agree - I can't help but worry about the radiation exposure over the years, but am happy that all the montreal xrays expose her to a lower dosage of radiation. I'd read somewhwere that that machine might be coming to the states soon, but dont know if it has yet. Hopefully it will become more widespread in children's hospitals so others can benefit as well.

[jillw]

Has anyone ever needed spinecor bodysuits between appointments and if so, what have you done? If I send a check will Montreal mail them to me? (I wish they took credit since that would speed up the process). How much does shipping throw on top? Does it take a long time to get through customs? thanks!

Sams Dad, We struggled with the same issues you bring up regarding my daughter's MRI. She is 8 like your daughter and I couldn't possibly imagine she'd be able to stay still for 2 hours in an MRI machine, but I was told if she was sedated it would be general anesthesia and I didn't want that either. Sometimes there is a middle ground - some people's pediatricians have written prescriptions for one oral dose of Ativan which has some anti anxiety and mild sedative properties. I had asked about people's experiences here and on the vbs website if you want to see how others with young children did it (http://support.vertebralstapling.com...aspx?id=161431 and http://www.scoliosis.org/forum/showt...ht=experiences)

We decided to try it without sedation and see what happened. My daughter is 8 like yours and also required a full spine MRI (i.e. technically 3 MRIs) They scheduled 2 hours for it. My daughter was anxious about her ability to stay still - but we talked about how it worked and we discussed it with the technician who agreed to ask katie every 10 min or so if she needed to scratch or wiggle a tiny bit. I was surprised (and thrilled) at how well it went. We brought a fleece blanket from home and they covered her with a blanket as well. They also put little wedge pillows on each side of her head to help hold it in position. Because she was warm and cozy she eventually went into a zone and towards the end even dozed off (unbelievable given the noise, but true; others posted the same experience) The time she spent in the MRI tube ended up being much less than 2 hours (about 65-70 minutes) . I think the 2 hours allows a cushion for if they have to retake a bunch of screens due to moving. They did have to retake one screen for my daughter (when her foot started to twitch as she was falling asleep) so I guess it technically could have been less time. When I scheduled the MRI, I had suggested that they schedule 1 session, take someone else in so we could take her to the bathroom, eat, let her wiggle and then finish about 45 minutes later. They didn't want to do that and it annoyed me. In hindsight, they probably realized it would go much faster if they just kept going instead of having to set things up again. Plus we went on a Saturday when it was much slower at the hospital so my guess is that if she had really needed a break, they could have squeezed one in. You can PM me if you wanted more details on how we prepared her, etc.

[jillw]

Sam's Dad, you might have to register at the VBS forum in order to see the post - but it's easy and free. There were more responses from those with younger kids there because usually an MRI is part of the VBS pre-op.

[christine2]

Hi Jill

I called Montreal and they sent them to me, I sent a check after getting the bill and the bodysuits. It did take a while for them to get to me, a couple weeks, Not sure if it was because of customs or the secretarys slow response. I believe the Docs are out of the office untill early May now.

[jillw]

Thanks Christine - was "international" shipping very expensive or was it comparable to a similar package sent in the states?

[christine2]

Jill

I really don't think they charged me for shipping, mistake perhaps, not sure but I'll take it.

[RugbyLaura]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

[CAmomof2]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

Laura,

Hope everything goes well tomorrow. We'll be thinking of you both. S.

[Pooka1]

Immi's review tomorrow - 22 months into treatment. Hope you're all well.

Laura x

Good luck, Laura!

[jillw]

Laura, How did it go? Good I hope.

[RugbyLaura]

Hi all, Have just got back from seeing Blood Brothers at a local theatre (or theater to you!) - which has not improved my mood.

The appointment went reasonably well. Was an interim visit (the one with no xrays) so no curve measurement.

Immi got a completely new brace as her old one was both far too small and a mangled wreck. Not lookng forward to the bill!

Good news was that her rotation was down from the previous visit - not quite down to last year's level, but a significant improvement on both October's and February's measurements.

One large worry though is that the secondary 'compensatory' curve, which is very high - C? - looks worse. We are keeping an eye on it and he has adjusted her brace so that her shoulder is not pulled so far down. He said that this is rare - only happens in 2% of cases. I have to admit that we are worried. Sounds like Lisanna all over again...

Perhaps it's something to do with ballet dancers.

Thanks for your good wishes.

Laura