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View Full Version : Worried about Spinecor


Sealy
25th October 2005, 03:31 PM
Hey gang,

As many of you know Deirdre is scheduled to get the Spinecor next week, a VERY flexible brace. She has been in serial casts for the last three and a half years (!!!) so I guess you can say, it's been rigid bracing all the way. Her back looks great right now, no sign of scoliosis. Sometimes she complains of pain in her leg and I see her walking a little funny but then she reverts back to normal - I'm thinking this could be due to just finding a new centre of balance :???:

I have complete faith in Dr. Rivard and I've read the Spinecor literature many times over and I understand the philosophy behind it - the one thing that really worries me is that I had a conversation with Miss Mehta back in 2003 and I mentioned the spinecor and she nearly passed out :ignore: All I remember are the words "NO NO NO " :-o I guess only time will tell if this was the right move..... I just want this scoliosis to be over and done with ! We've done so well up until now.

newgirl
25th October 2005, 06:27 PM
Sealy,
I can completely understand your apprehension, but I think no matter what route you choose at this stage its going to involve a leap of faith. It is difficult to get used to the thought of a non rigid solution, but what is the alternative, keep Deirdre in a rigid brace until she stops growing :???:
The other thing to remember is that this is not a irreversible decision, if you or Dr. Rivard decide that the spinecor is not doing it's work, you have the option of going back into a rigid brace or cast.
If I remember correctly the last cast Deirdre was wearing was very loose and it was not believed to be giving much support, surely the spinecor won't prove to less supportive?

Anyway, the very best of luck next week, we will be rooting for you and Deirdre and for the end to your scoliosis journey :hug:
Nicola

gerbo
25th October 2005, 06:43 PM
I think that at the time you asked her about it, it would have been an absolute no, no, no given her age and degree of curve then.

whether she has the same opinion about it with regards to older children, maybe not. In anty case, she advocated the lateral shifting (and many orthopedics would say no, no, no about that) as a way of dealing with scoliosis in the older child, and as far as i can see, spinecors action might just be doing that (lateral shifting)

I doubt that you could do much wrong, surely if things will deteriorate (god forbids) nothing has superior evidence behind it that it would prevent that happening. kind of saying; donot think you can do much wrong here, if there are no clear rules, you have to make them up, based on the best info available?

Still, isn't it hell lioving with this kind of insecurity all the time?

best wishes and keep smiling :D :D and keep hugging your daughter :squeeze: :squeeze:

gerbo

Sealy
25th October 2005, 07:05 PM
WOW !!! You guys are just ABSOLUTELY THE BEST !!!! Where would I be without you :squeeze: I'm beginning to feel better about this "leap of faith"

sins
25th October 2005, 07:28 PM
Sealy, technically Deirdre may even be ok without being braced.
So by trying the spinecor, I really believe that you can't possibly do any harm to her.You're using it under the supervision of a scolisois specialist and I'm sure the moment the curve should show any deterioration he'd discard it without hesitation.Deirdre's curve is at such a manageable size Sealy, you have several options, the spinecor seems perfectly reasonable.
Sins

Sealy
25th October 2005, 09:51 PM
Thanks Sins :squeeze: It's Sooooo difficult to choose between so many different alternatives. I'm already feeling better about going with the spinecor brace. THANKS GUYS :D

RosieRich
26th October 2005, 09:17 PM
I'm looking forward to hearing how you get on with the spinecor brace as when our daughter was first diagnosed we found out about it and it seemed like the way forward in bracing.

Sealy
26th October 2005, 09:33 PM
Thanks Rosie ! I'll be sure to keep you all posted, I don't think you'll have a choice :hammer: :-D Hey...it beats going to the shrink :-o

sins
1st November 2005, 05:29 PM
Good luck today Sealy.Hoping it not a difficult fitting and that you get home safely.Have a good trip.
Sins

Sealy
2nd November 2005, 03:18 PM
Hey Gang,

First off, I’m suffering from serious caffeine withdrawl - I had time for only one cup yesterday! We had to catch the 6:55 a.m. VIA rail train and as soon as I boarded our cabin, I knew something was foul. I’m very sensitive to odors and the cabin definitely smelled like an outhouse. At first, I thought it was just me and then I noticed half the cabin covering their noses – I knew there was a problem. We mentioned this to the attendant and half our cabin moved into the first class cabin – boy was it nice in there !!!!

Our appointment was scheduled for 1:00 p.m. and we arrived in Montreal at noon. Dr. Rivard’s secretary met us at the entrance to St. Justine Hospital because it's virtually impossible to find the clinic. I was very impressed with radiology because they put a lead jacket on Deirdre and did P/A rather than A/P x-rays - they also use digital x-rays, no hard copy hence less radiation. Her curve out of cast looked very good, it didn’t look very much different from the x-ray with the Spinecor brace. With the brace, the curve is down to 4 degrees !!!! Dr Rivard and Dr. Coillard were very happy with the results. I’m really happy with the Spinecor because when she wasn’t wearing her cast/brace she was VERY wobbly and couldn’t really support her back for too long. Now with the Spinecor, there is no problem whatsoever – she is very stable when standing. We have to go back in 5 weeks for a follow up. She is adjusting very well to the brace and of course she'll be able to wear a lot of the clothes which didn't fit her when she was wearing her cast. Looking at her this morning, I couldn’t even tell she had a brace on even with a snug fitting dress. She looks just like a normal little girl. The only problems right now are the crotch straps which are rubbing her legs and I'm hoping that they will stretch a little after a few days. She also can’t wear regular underwear because it’s impossible to remove for bathroom purposes. She has to wear a body suit with crotch snaps. I was given two body suits but I’ll have to find more at regular department stores.


Oh another thing, our appointment ended roughly at 4:00 p.m. and we had to board our return train at 5:00 p.m. Rather than taking the Metro and the bus to the train station, I thought I would save time and get a taxi (BIG MISTAKE !!!!!) First off, customers are NOT allowed to board any old taxi waiting in cue – customers MUST board the first one in line. It was raining, and after much confusion I boarded what I thought was the first one. I didn’t think our taxi driver would allow the stroller in the trunk but finally we managed to get it closed and it fit !! So we’re all in the taxi and getting settled in, when another frantic taxi driver shows up and starts screaming at our driver – it all seemed really comical in retrospect because they were screaming in French. I really thought one of them was going to pull out a gun and start shooting. Deirdre and I were in the back seat frozen with fear, I made one attempt to leave but I was stopped by our driver. All the while, I’m thinking we’re not going to make it out of here alive and we’re going to miss our train :-o Finally, the driver pulls off with the other driver clutching the driver’s door still screaming in French. Anyway, so that was our trip…



sealy

titch
2nd November 2005, 04:47 PM
:-o What an event with the taxis :shock:

It's really great to hear that Dierdre's curve is looking so good. I'm sure she will get more comfortable in the brace as time goes on, if nothing else the skin will toughen a little which will help, and I'm sure the straps will give a little.

Sounds like it was great except for the last bit of it all!

Sealy
2nd November 2005, 07:09 PM
Titch,

It felt as though I was witnessing a domestic dispute ! Our taxi driver looked as though he was about to collapse with a heart attack from all the screaming. I just wanted to get out of there and felt kind of removed from the whole thing, I'm not used to so much humanity and passion :-D

It's wonderful about the correction ! I'm really pleased ! I'm trying to get them to send me copies of the x-rays to my e-mail address. There are no hard copies, so it's kind of weird that way. Drs Rivard and Coillard are wonderful people and more importantly brilliant doctors. Dr. Coillard was the one who fitted Deirdre with the brace. They had pictures of another little girl roughly Deirdre's age doing headstands and ballet with her brace on - she looked very happy. Of course Deirdre took this as a challenge to do headstands with her brace as well :-)

sins
2nd November 2005, 08:30 PM
That was a superb fitting Sealy by all accounts! 4 degrees,wow how did they measure that?
I think after that you'll be the one doing handstands, never mind Deirdre....

Thaleias spirit
2nd November 2005, 10:34 PM
Great to hear that you both got on so well ..
4 degrees .. gosh .. i could only dream about that!

I can imagine how excited deirdre must be now ..
especially if she managed to do headstands afterwards !

First class travel and all .. :hammer:
(pity about the taxi driver though .. ).

gerbo
3rd November 2005, 08:09 AM
so glad it went well for you and deidre.

Doubt whether you need to worry too much about x rays, apparantly amount of radiation is so much lower then 20 years ago. also, if she gets properly sorted now, lifetime number of x rays likely to be much lower.

4 degree?? that's nothing and means to me she is straight in the brace. How much was she out of brace?

do they use same parts as for more grown ups, or is there is minispinecor for little people?

best wishes

gerbo

Sealy
3rd November 2005, 01:20 PM
They measured her curve with a computer program, I guess one could say she is straight in the brace. :-D The curve out of cast was about 15 degrees, from a clinical perspective she looked very straight - there was no rib hump. When she bent over for the Adams forward bending test, her spine looked like a straight line. Given her age and history, there is great potential for progression, so I think we're doing the right thing by focusing on her muscles and teaching her the correct movement. Unfortunately, I'm a bit shy and didn't ask too many questions - I wanted to ask about the long term study but I never found an appropriate time to ask. I was told that Deirdre will be used in studies they are conducting - of course no names will be used. They were very thorough in the evaluation. I raised some eyebrows when asked what her intial cobb angle was.

Gerbo, the spinecor brace she is wearing is extra small and yes the parts are all the same. I'll try to get some pictures later, I'm still recovering from the trip. I'm so glad I didn't drive all the way !

jfkimberly
3rd November 2005, 01:26 PM
It must have been enjoyable to raise those eyebrows by giving them the "before" information while they were looking at the "after"... Deirdre is quite the little success story so far.

Good luck with the new approach! I really hope her correction holds.

newgirl
3rd November 2005, 01:28 PM
Sealy,
That sounds so great, it is a pity the trip was so stressful but the results sound like they were worth it!
Nicola

Sealy
3rd November 2005, 01:32 PM
Thanks Kimberly/Nicola ! I have a feeling we're in the clear, but who knows....anything can happen.

gerbo
3rd November 2005, 02:15 PM
15 to 4 degree, that's worth the effort. I have a good feeling about this, you'll be ok :D :D :D