spinecor

[pat]

Dr. Colliard. She doesn't seem to like many questions asked.... Not sure if anyone else has run into this?

It's truly just her English, now on the other hand, if you know French . . . . .
p

[Pooka1]

Sharon, are you aware of the "New Posts" function on the boards? it's across the top in the blue border next to the "search" function. That's what I always hit when coming to this board because it shows a summary of the threads that have new info since the last visit and I can decide which ones of those I want to open up and read.

Yes I knew about that but it seems like rather than start a thread about the visit folks tend to put Spinecor visit updates in this massive thread.

Maybe I shouldn't be starting a new thread with each visit my kids make like it's front page news??

[leahdragonfly]

'new posts'

Sharon,

I don't think Jill was talking about starting a new post, she was talking about viewing the new posts each time you visit the forum. You had mentioned that sometimes you don't see updated posts on the SpineCor thread or something along those lines. I know I always go right to the 'new posts' tab when I visit, to see which threads I want to read.

[Pooka1]

Ah I was unclear.

I do go to"New Posts" but I don't always read the Spinecor thread new posts because I didn't realize until recently that most folks with kids in Spinecor put their updates in that thread rather than starting a new thread.

[jillw]

I was going to say what Pat said....my sense is that Dr. Rivard is more comfortable speaking English than Dr. Coillard. I think Dr. Coillard's english is EXCELLENT and I wish I could speak french even a tiny fraction as well as she does english - but I get the impression she's not as comfortable with english as is dr. rivard.

Sharon, it's almost like this thread has evolved into its own forum - but instead of being a technically separate forum like say, the vbs forum, it's housed here in NSF. I know some don't like it, but, personally, I like that everyone posts in the same spot with results for spinecor and such. When my daughter was first diagnosed it was WAY easier for me to follow people's progress since most of the spinecor people posted in one place. Yes, reading through gazillion posts was time consuming, but because they were in mostly one place it actually took a fraction of the time it would have taken if there were 200 different posts with different questions about spinecor or different updates for the patients (and I could always skim through less relevent ones. However, you are correct in what you have recently figured out that most updates are posted here.

I think it's different in your case since there isn't really an equivalent "night bracing" section and maybe its not needed since it is more mainstream? In general, it seems like spinecor and vbs folks (on the separate vbs forum) post results after every visit, mainly I suppose, because they are newer treatments and this anecdotal evidence is interesting. I wish more who were in night braces or boston braces kept us updated on how their curves were doing from visit to visit-so you continue to post your front page news!

Christine, I guess I hadn't realized our daughters are the same age. So we'll both start to sweat profusely right around the same time!

emarismom, it makes sense there wasn't reduction - typical with their experience before a couple years or so. Dr. Rivard said that they used to take annual out of brace xrays in the earlier days and from this they realized that any potential corrections take longer to stick (my paraphrasing). However, they would prematurely lose patients who were discouraged that the in brace correction wasn't holding a year or so into it and that out of brace xrays showed curves at approximately the pre brace levels. I consider holding at pre-bracing levels to be a victory, personally, so it wouldn't deter me. However that doesn't keep me from hoping for a true correction over time.
sorry for the overabundant use of emoticons...i'm feeling more like my daughter than a middle aged woman at the moment. must be the spring in the air....

[CAmomof2]

In case anyone was wondering if the brace "sets off" the metal detector at the airport - it doesn't!! My daughter walked right through but they had to scan me!!! We had a laugh over that!!

[christine2]

back from a re check Great news

Hi all

We had a re check on Tuesday, My daughter is still holding at 1 degree!!

My daughter adjusted very well to her shiney new brace. Her new brace is a bit larger and snugger. Spinecor now has a a bodysuit with shorts. My daughter LOVES them.

[CAmomof2]

[QUOTE=christine2;74820]Hi all

We had a re check on Tuesday, My daughter is still holding at 1 degree!!


Congratulations!!! Wonderful news!

[BellasMom]

Christine, this is great news!!!! Congratulations!

[concerned dad]

yes, congratulations Christine.

I'm curious (if you feel like sharing), any talk about what to do next?

Dr Rivard told us that if we took my daughter out of the brace before Risser 4 she would loose all correction and it would be as though everything she had done would be for naught. I didnt really buy that (mostly the Risser 4 -vs- say, another measure of skeletal maturity such as a DSA) but we discussed it at length.

[CAmomof2]

CD,
We were told that it takes about 18 months for the brain to be "retrained" to hold the muscles / body right. I'm not saying that is all our daughter will wear it for - she is almost 10, so lots of growing to do!

[samsdad]

New here -- I welcome advice/insight from you all

Hi. My 8-year-old daughter, Samantha, was recently diagnosed with juvenile scoliosis.

Quick family history: I also have scoliosis. It was not detected until my mid-teens. I had no treatment until age 22 when I underwent spinal fusion surgery in 1985 (47 degree pre-surgery curve) and attained pretty good correction (about a 10-15 degree post-surgery curve).

Needless to say I was devastated to confirm what I had long feared -- that I would pass my condition/burden on to my children. Given my history, I think I am at least subconsciously sensitive to my children’s posture. About 4 months ago I took my daughter roller skating and spent about 2-hours skating behind her and noticed a slight asymmetry. Her 8-year-old check-up was coming-up so I made a note to ask our pediatrician to do an evaluation. The pediatrician agreed that there appeared to be a slight rib-hump and recommended I take her to an orthopedist.

She had an appointment with an orthopedic surgeon on April 2nd - the same doctor that performed my surgery. He took front and side x-rays and measured her curves as:
19 degree Left Upper Thoracic
22 degree Right Middle Thoracic
1+ rotation
Some hypokyphosis (slightly flattened)

The orthopedic surgeon recommended that we wait and watch for now. We have a follow-up appointment in July to see if the curve has progressed. The doctor indicated that if the curve does progress he would likely prescribe a Boston brace. I had done some research on my own prior to our appointment and asked about the Spinecor brace as an option. He said it wasn’t proven yet and that his practice goes exclusively with the Boston brace.

Both my wife and I are not in favor of putting our young daughter in a hard brace for what would likely be many years given her age. As far as we can tell, our only other options to a hard brace at this time are either the Spinecor brace or vertebral body stapling (VBS). Of those, Spinecor is our first preference since it is non-surgical and we would likely only consider VBS if the Spinecor brace was unsuccessful in stopping the progression of the curves.

We decided to send Dr. Coillard and Dr. Rivard an email describing Sam’s case to see if they would consider accepting her as a patient. I couldn’t believe it when Dr. Rivard called us later that same night and then called me back the next day to schedule a brace fitting appointment. We go to Montreal on May 7th! Given this I’m not so sure I will keep our July appointment with the orthopedic surgeon; I certainly wouldn’t want more x-rays taken in addition to ones that will be taken in Montreal.

I’ve spent some time reading this thread on the forum and I’m impressed with the support and knowledge you all share. Does anyone have some advice on how to make that first appointment go smoothly for my daughter? Also, we are driving from NJ (I think it’s about a 7 hour drive). We plan to drive more than half way, stay overnight at a hotel, then drive the last couple hours the next morning of our appointment. We then plan to spend one night in Montreal (to be close to the hospital in case we encounter something with the brace that first night that we would want help with) and then drive straight home the next day. Can anyone recommend a hotel about 2 hours outside Montreal (coming thru NY)? How about a hotel in Montreal near the hospital? Also, I noticed the post above regarding a body suit with shorts (Christine2). Do you get some of those as part of a fitting appointment? I could go on and on (I probably have a hundred questions) but I better stop for now. Thanks in advance for you support!

[christine2]

Samsdad

We either stay in Plattsburgs NY or Old Montreal. There is a very nice hotel, Springhill suites in Montreal. You can walk to the science center, lots of resturants, ect.. Plattsburg I am not sure, the last hotel we stayed in was a bit runned down. I am going to look for a nicer one.

You get 1 bodysuit with the brace. The last time we were there we bought 4 x tras. They are expensive $60.00 a piece. Bodysuits is a real problem for us. My daughter only like the spinecor suits.

[concerned dad]

Samsdad,
earlier in this thread I mentioned using priceline to stay in Montreal.
here
I dont recall seeing many (any?) hotels near the hospital. The Hyatt I mentioned and "Old Town Montreal" Christine mentioned are east of the hospital in areas (in my opinion) which would be preferable to stay (more to do and see).

Also, You can get your xrays in Montreal and share w/ your local doctor. They (St Justines) use a low dose x-ray machine.
You will likely have a follow-up 4 - 6 weeks after your initial fitting.

There are a lot of folks here who have children Sams age who have reported very good results with the Spinecor.

[jillw]

Christine, Great news!!!! I'm very glad to hear it!

On our last trip we got some of the newer "shorts" type bodysuits - but unlike your daughter, Katie hates them. She finds it harder when using the bathroom in them because the "flap" that you unhook isn't as long. Usually she pulls her bodysuit up and away and tucks it into her brace to keep her hands free (yet her bodysuit clean). This "flap" on this one isn't long enough. It's a bummer because we bought several shorts bodysuits and no regular ones at our last visit. I should have just bought one to see how she'd like it and stocked up on a couple of the older, tried but true ones. It's all a matter of personal preference I guess! Speaking of which, I've been meaning to go back to that bodysuits webpage to see if they ever did start selling bodysuits in children's sizes. We simply don't have enough "regular" bodysuits to last us until our next trip.

Samsdad, we have stayed at Springhill Suites while in Montreal also. Nice facility and nice cute location (the kids say the neighborhood reminds them of Hogwarts with its stone buildings). Nice tourist diversions right in walking distance. We have also stayed in Ruby Foos. We stay there when we are doing a quick over nighter and not going to have time to enjoy Montreal. It is much closer to the hospital and tends to be quite a bit cheaper also (not near points of interest; more near highway, strip malls etc). They have 2 grades of rooms. If you were to stay there, you might want to consider spending a little extra for the higher grade room (i forget, is it called deluxe?). Those rooms have been recently renovated and are very clean and modern whereas the other rooms, while adequate, are older.

Regarding hotels on the way...2 hours out is kind of tricky because it's fairly remote going up I-87 in that part of upstate. As Christine mentioned, Plattsburgh is a fairly developed area and would have several hotels/motels to chose from, but that is closer to Montreal than what you were looking for...it's approx 65-70 miles from montreal although it does take some time with the border crossing and all. What would you all say, is it 1 1/2 hours or maybe a little more from plattsburgh to the hospital?

South of Plattsburgh is pretty rural so don't know what lodgings are offered. Next closest "developed" area would be the Albany/Saratoga Springs/Lake George Corrider which is approximately 3-4 hours away depending where you stay. We live near Albany so I haven't stayed in hotels here, but there would be numerous hotels right off of I-87 near Albany, Latham, Clifton Park , etc. Of course that would leave you a longer drive than you want the next day.

My daughter is a similar age/curve size as your daughter (you can see more details in our signature, below). We also went through a similar thought process as you state. You say you've been reading the forum so you are probably already familiar with Shriner's Philly. They don't do spinecor, but they are the inventor's of VBS. However, in addition to VBS, they are a great resource for everything outside of spinecor. They try to think outside the box and come up with a customized solution (to the extent possible) that will work for a child and they are on top of (and/or behind) the latest scoli research. Did the orthopedist who diagnosed her say anything about getting an MRI? Although some doctors differ on their protocol, I believe it's fairly standard to have a full spine MRI when a young child is diagnosed with scoli (i.e. JIS not AIS). This is to rule out other underlying conditions which may be contributing to the scoliosis such as chiari malformation/syrinx, tethered cord, neurofibroma. Especially when there is a left thoracic curve - so I'd imagine that it would be warranted in your daughter's case. A question to ask the various orthopedists you meet with anyway....

Good luck! Let us know how it goes.