spinecor

[Celia]

Thanks Gerbo ! Hopefully we'll be assigned to first class seating since the curtains on the windows available *only* in first class are *absolutely* necessary since the blinding sun in the morning prevents me from reading the morning paper LOL !!

I was also going to comment that we're having a lovely Indian summer here in Canada

[cherylplinder]

Celia,
Have a great time!

Christine, how did your visit go?

Hugs,
Cheryl

[Celia]

Hey guys,

Just a quickie update... I`m waiting for our return train home as I type this. Deirdre`s curve is still at 1 degree and holding. Dr. Rivard wanted a lateral x-ray as well this time around, so we had two x-rays. We got new crotch straps and that was it! I don`t think Dr. Coillard wants us to replace the brace until next year when it`s anticipated that Deirdre will have outgrown it. I was discouraged from replacing the elastic bands and it was explained to me that replacing the elastic bands is a big no no

[MATJESNIC]

Celia,

I'm happy to hear that Deirdre is continuing to do so well!!!


Melissa

[cherylplinder]

I am not surprised at your results, but I can't believe how relieved I am. Your blessings make me feel blessed. I am rejoicing with you, because I know you are beyond rejoicing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!

Did Dr. Coillard explain the theory about the bands?

[gerbo]

[christine2]

Cheryl

I did post when we got back from Montreal but I will do again. Thank you for asking.

5 weeks post bracing my daughter is holding a 11 degrees, was 9 (margin of error) Dr Colliard said she looked great out of brace as well. She tightened the shoulder strap I assume to get more correction.

We are all very happy with the decisions we have made I just hope that it stays that way!!

I want to screem from roof tops early detection and Spinecor. What a great product. My daughter has not complained once about it. I fight with her to take it off!!!

We do not go back now for 5 months which makes me nervous. I called and spoke to a nurse at Childrens Hospital in Hartford CT and was told that they had another girl they are seeing wearing Spinecor.

Pat is that your daughter ? We have an appt in early December.
I was initially nervous about going there because I was afraid that I would be shamed into considering a hard brace but it sounds like Pat has paved the way for us and future kids.

Thank you to all for allowing me to vent and feel some what in control thru this. My familiy has been through alot the last couple months and being able to come to this forum has helped alot

Christine

[gerbo]

I`m waiting for our return train home as I type this

. first class, or did you have to sit with the ordinary people ??

Deirdre`s curve is still at 1 degree and holding

.

that's not a curve, that's straight in my opinion

Dr. Rivard wanted a lateral x-ray as well this time around, so we had two x-rays

. did that give any additional info, ??anything still abnormal on the lateral??

I don`t think Dr. Coillard wants us to replace the brace until next year when it`s anticipated that Deirdre will have outgrown it.

any indication how long they think she needs to stay in the brace. Do they think she is at increased risk of developping scoliosis again at a later stage??

You must feel very chilled, relaxed and happy

[Celia]

Cheryl,

Your post left a lump in my throat, it’s so emotional. It is quite a relief that her spine is holding at 1 degree, out of brace her back looks amazingly straight. This is quite an emotional journey and we really don’t know what the outcome will be but until that day…. it’s great to have a few buddies to share our joys and disappointments.

Gerbo,

Since you asked… on the trip to Montreal the conductor usually uses one of the first class compartments for economy because they overbook by 20%. The trip is five hours long and every little bit that adds to comfort helps! It’s hard to be “fresh” after a five hour trip. Each seat in the “luxury” compartment has an outlet where portable dvds and laptops can be plugged in, not so in the economy. Yes we did get into one of the “luxury” compartments on the way there but not on the way back. As for how long she'll have to wear the brace is really a non issue for me - it's not like she's being tortured as she would be in a Milwaukee brace and for all intents and purposes is living a very normal life right now and I see no signs of psychological trauma. I think I would be more of a nervous wreck if she didn't have any kind of support.


Anyhoo…. in the morning since the train heads east, we see the sunrise over the lake – which was absolutely spectacular and on the trip home, the train heads in the direction of the sunset and that was equally spectacular….hey I’m trying to enjoy this journey!

[gerbo]

mmhhh, crossing canada by train, sounds like a bit of a dreamjourney to me, well, you never know, once I've done the transsiberia express...........

[Celia]

I didn't have time to post this earlier but in response to Cheryl's question regarding the elastic straps....dr. Coillard said that some European centres were replacing the elastic bands every three weeks and were having poor results. I could feel that this a very contentious issue at the moment and nerves are strained. She did say that if I really wanted to replace the elastic bands or the entire brace for that matter that I would have to come back in 1 month to have everything adjusted and I guess additional x-rays. Alternatively, they don't like the idea of shipping the elastic bands out to parents in advance since we may not know where to place things and screw everything up. So.... that's it in a nutshell!

Gerbo, I don't know why a lateral x-ray was taken but I think it does have some predictive value otherwise he wouldn't have asked for one - maybe he's looking at the kyphosis or lordosis number?

[gerbo]

I don't know why a lateral x-ray was taken but I think it does have some predictive value otherwise he wouldn't have asked for one - maybe he's looking at the kyphosis or lordosis number?

that's not like you, not to question the reason for why things are being done.

As for how long she'll have to wear the brace is really a non issue for me

I can completely understand your reasoning and your fears in this respect, however, it would be interesting to know whether the doctors still consider her at risk of developping scoliosis again. Are you confident, or are you still quite worried?

Still, the big picture is that you have really made a big difference to the life of your daughter, and you should be so proud of how against perceived wisdom you worked out yourself what was best for her, stuck to your guns, and now have the results to prove you were right all the time. Keep going!!

[Celia]

Thanks Gerbo! What a sweet thing to say!!!!! We're all trying to do the very best we can and I'm grateful to doctors such as Min Mehta, Dr. Rivard and Dr. Coillard who are making it possible for children to live/lead better lives....if not for them I don't think Deirdre would have done so well. I shouldn't forget the doctor who made it possible for Deirdre....Dr. Hedden the greatest doctor in the world !!!!

I already know why the lateral x-ray was necessary so I didn't have to ask

[Mom37]

Thank you all Spinecor support group!

I wanted to thank all for your ears and advice! If I hadn't told you, Shriners in Erie, PA said no brace will hold our daughter's curve, and she will eventually need surgery, but that it Spinecor was as good as any. So we went to Scottish Rite in Dallas for a 3rd orthopedic opinion due to rapid progression of the scoliosis to get our foot in the door if spinal surgery becomes needed. Dr. John Birch was terriffic. We will continue our orthopedic needs there should fusion surgery become needed. With my daughter's high thorasic curve, an MRI was ordered. She has a cyst in her spinal cord, a syrinx, and her diagnosis is Syringomyelia and Chiari I malformation. Great resource is www.asap.org. We were referred to see a neurosurgeon at Childrens Medical Center in Dallas by Scottish Rite. Their first date was Nov 27th, so we got the pediatrician to refer us to Cook Childrens in Ft. Worth, TX sooner. We have seen the neurosurgeon at Cooks yesterday and Chiari surgery will be needed before the end of the year. Scottish Rite got Children's to work us in sooner on Nov. 7th for our second opinion. doctor in We are continuing Spinecor for now as we want the curve to hold from further progression as long as possible as no guarantee the surgery will help the scoliosis from progressing, but is probably the cause of the scoliosis. We know Scottish Rite doesn't support Spinecor either, but they are also not sure a hard brace will help either like Shriners. Thanks.

[Christina_in_NC]

I tried to catch up on your history but I didn't see what your daughter's curve is. Did they think the Spinecor would not hold it because the curve is too high, or because of the other complicating issues going on with it?