spinecor

[concerned dad]

Wow, this is a long thread. I have not been able to read through all of it. Hard to keep track of where I leave off.
But, last night I did read some of the more recent discussions and wanted to add something.
While discussing the Wong paper (showed poor SpineCor results for a study in Hong Kong) this summer, Sharon made the following very valid observation about 30 pages back.

Some things I consider when looking at this situation is why was the rebuttal published only on the Spincor website and not in the journal? Maybe the journal doesn't publish rebuttals but maybe they do and did not accept this rebuttal for some reason.

I just wanted to add that since the time of that discussion, the rebuttal was indeed published in the Journal. It says much of the same as the rebuttal on the SpinCor Website. But, for me at least (and I am guessing Sharon), seeing it in the journal carries much more weight. It was in the Dec 1, 2008 issue of Spine.

What I took away from this is: Iff the SpineCor is an effective treatment, it DOES make a difference in who applies/fits the brace. I decided at that point that, if we were going w/ the SpineCor, we were going to Montreal. (Not that I dont think you can get good results elsewhere, but I would sure stay away from Hong Kong)

[BellasMom]

I totally agree with you on the subject of who fits it

Our regular doctor is the lead ortho in Boston Children's. He used to use SpineCor about 10 years ago, but then stopped. As he said, there were great results first year, but then they deteriorated. I suspect that he was not fitting the brace himself (being such a big fish), but was using technicians and I was not 100% sure that his technicians were all trained properly

We had an option to go to Connecticut or to Montreal, we obviously have chosen driving twice as long for the much better service

[concerned dad]

Insurance

Perhaps some of the folks here can consider the
Question I posted in the insurance section.
Thanks

[concerned dad]

Montreal hotels

This info may be useful for folks who travel to Montreal for treatment.

The Hyatt hotel in downtown can be had for $55 though Priceline’s opaque bidding product. (and this pricepoint may change in the future)

Details on how to do this are available on a forum whose sole purpose is to help people make informed Priceline bidding attempts. It is www.biddingfortravel.com
That forum is moderated with an iron fist, so before you post a question there (or attempt to bid) you should read the FAQ (frequently asked questions). You can see information there about Montreal hotels if you scroll down to the Canadian hotel threads.

I just booked two rooms at the Hyatt for $55 each. The best non-opaque price I see for this hotel is $130US. So this represents a savings of a fair amount of money (which I may need for some extra bodysuits).

The biggest caveat (and there are others) to be aware of is: No cancellations and no refunds.

I know it’s not for everyone, but thought I would throw it out there.

[pat]

Thanks for the bidding for travel website; we're heading up next week.
p

[LeahsMum]

Hello to all. I am one of those who have silently read these threads and never posted but now that I am one of you felt the need to post and say a HUGE thank you to all of you. I am from Australia and have an almost 7 year old daughter with right thoracic scoliosis at 28 degrees. We saw the orthopaedic surgeon who recommended the milwaukee brace which frightened the life out of me. I did as much research as I could and came across the SpineCor brace which interested me. It wasn't until I found this forum and read all of your stories, some successes and some not that it helped me make what was a difficult decision. We live in Queensland and as of yet the brace is not available here so we would need to travel to New South Wales so on top of the brace fee we also would have regular airfares as well. After putting it all together, the research and the personal stories we took the leap and decided to try the SpineCor first before anything else. Leah has now been in the brace 6 weeks and have just flown back to Sydney to have her first check where we also had her in brace xray. We we over the moon to see that at in brace she is 13 degrees. This was more than we had hoped for and is such a wonderful start and such a relief to us to know that we made the right decision for her at this time. We know that it's a long road ahead but so far so good. Once again I can't thank you all enough for putting the time and effort into sharing your stories and helping me make the right choice for my daughter. I hope to get to know all of you throughout this journey.
Tammy

[RugbyLaura]

Welcome Tammy!

My husband's parents live in Queensland.

Laura x

[concerned dad]

Hi folks, we’re back from Montreal and everything went well. Her curve went from 38 to 27 in brace. The hardest thing we are dealing with are the snaps. Hopefully they will become easier to snap as they get used more. Perhaps my daughter would disagree, but the main issue seems to be one of cosmetics rather than comfort. She will have to modify what she wears if she wishes to hide the brace. We picked up 3 bodysuits. Perhaps we’ll look at bodysuit.com to see if any others are suitable/acceptable to her.

I was impressed at how meticulous they are with the xrays. They are obviously trying to minimize error and variability. I was also happy to see they had one of those low rad xray machines that significantly reduces the dose.

I was also happy to see that they provided a letter to our insurance company with information necessary for reimbursement (assuming the insurance company reimburses out of network).

The hotel that I linked to above that we got through Priceline was fine. We booked two rooms and when we checked in I asked if we could have adjoining rooms (no guarantee of this w/Priceline). They upgraded us to a two room suite which was nice. Parking was expensive ($29 valet). The hotel is built above a large underground shopping complex and I understand that if you make a $25 purchase at any merchant they validate your parking. We didn’t learn this until too late. The hotel is located right on Rue St Catherine in the heart of the dining and shopping areas. Old Town Montreal would be a short walk (in the summer, not last week). St Justine’s Hospital is not close though, it is about 6 miles away.

We did some sightseeing. If I get up enough guts, I’ll share a story about one of our stops in another post.

[CAmomof2]

Concerned Dad,

Glad to hear that you made it safe there and back. The snaps do get easier - they probably are already! The outfits do need adjustment - my daughter has to wear shirts that have a higher neckline, and her pants need to be a size larger.
We are going back to Montreal in March for her next appointment. I am starting to get a bit nervous!
How is your daughter adjusting to her new brace? It seems to take a week or so to get used to it. Hope she is doing well and you too - it is hard on the parents as well.

[BellasMom]

Snaps really do get easier - we could not snap #4 all together - Dr. Colliard, me and my husband Now, Bella does it all by herself

We have an appointment on Tuesday for her first check-up - I am nervous. I won't even be there - my husband will drive Bella there on Monday and back home on Tuesday

Wish us luck

[concerned dad]

OK, this post is a little hard for me to write. If anyone has followed or joined in some of the discussions on the other threads you may know that I am a scientist at heart. Although raised a strict catholic, I am not a religious person. I am not anti-religion, I guess the only strong feelings I have on the topic are that, while science and religion are not incongruous, religion has no place in a science classroom.

In any event, I decided to share this story in honor of my late mom. She would have wanted me to at least acknowledge it happened. Some may find it a mere coincidence; others may sense a deeper meaning. So, here it goes…..

While preparing for my trip to Montreal I used, as I often do for trips, the website Tripadvisor. I pulled up a map of Montreal and found St Justine’s Hospital. Now Tripadvisor also shows points of interest (POI’s) to tourists. I saw the closest POI to St Justine’s was a church. My wife and I enjoyed visiting old churches and cathedrals during previous trips to London and Rome. I figured I would click on the POI link and read some reviews.

It turns out the church is called St Josephs Oratory. I started reading a review from a visitor. He mentioned a chapel loaded with votive candles and discarded crutches and braces hanging on the walls. This jarred a distant memory for me. I googled the church and found that it is a pilgrimage destination where faithful people come and pray to St Joseph for intervention. Part of the pilgrimage involves crawling up a long flight of stairs on your knees praying. Well, this jarred another distant memory.

I should say now that my mother was very religious, a strict old school catholic. She believed strongly in the power of prayer, miracles, Saints, pilgrimages, the works.

So, I emailed my siblings and asked if any of the older ones recalled anything about this church. My sister wrote back and told me that when my grandmother was dieing, our mom took us on a pilgrimage to St Josephs Oratory to pray for a cure. This was a long trip for us as we lived on Long Island. I was about 6 years old but I do remember the old crutches and discarded braces on the walls and crawling up the long stairs on my knees. My sister reminded me that grandma still died (thanks sis).

Well, the thought that I find myself back, 40 years later, almost across the street from this church filled with discarded braces and crutches where I made a pilgrimage with my mom, now getting a brace for my daughter, sends chills up my spine. I can imagine St Joseph saying, See Mrs. “Concerned dad”, you came to this chapel, like so many faithful, to pray for a cure for your mom. It is her time to come home, but I’ll tell you what - that young boy at your feet will give you a lovely granddaughter. One day that little girl will have a serious problem and I will steer her father back here close to this church for help. Not only that, but when he realizes this, he will rethink his skepticism of the power of prayer”.

I have to tell you, before I walked into that hospital, I turned around and looked across the street at the towering Dome of the Basilica of St Joseph’s and said a prayer.

[Susie*Bee]

Thanks so much for sharing.

[Pooka1]

NPR StoryCorps

Hey Concerned Dad,

That's the kind of story that should be on the radio.

StoryCorps

[pat]

That is a beautiful story, thank you. 3-1/2 years later, and 7 inches taller, and we're holding in brace at an 11. Drs. Rivard and Colliard are pleased, naturally we are too.
p

[mariaf]

Concerned Dad,

What a story! I just wanted to say that I smiled several times while reading it - your mom sounds a lot like mine, lighting candles in church, saying "novenas", etc. (right down to the fact that my family is from an area about 15 minutes from the Queens/LI border!). I actually could describe myself pretty much as you did - not "anti-religious", but not very religious either (certainly not compared to my mom - LOL!)

That said, I do believe things happen for a reason and that there are no coincidence in life.

Again thanks for such a great story.