spinecor

[emarismom]

gerbo,

You have put up a good fight, sometimes we just have to take what is handed to us and make lemonade. Thankfully, as bad as it is, we do have fusion surgery that CAN correct these curves. We may not always like the means to the end, but in the end Lisanna will fine. (I tell myself this on a daily basis to keep myself going).

Mom37,

That is wonderful that Amanda is able to do so much SO soon!! I think I would hold off on the rollercoasters as long as possible too. Especially with the syrinx (Is it completely gone or has it reduced?). Emily has never been tall enough for big coasters, and also not too interested, but in March we will be going to Six Flags Over Georgia, and I have been getting worried about the bigger coasters and her CM/SM.

[jillw]

Gerbo,
Emarismom is right...you certainly have put up a good fight and in the process have educated people such as myself to all kinds of alternatives to a boston brace. It was through you (by starting this thread) that I learned of spinecor and from your other posts first heard of the Cheneaux brace and torso rotation exercises, etc. You take a very thoughtful/logical and holistic approach to this condition that I wish I could find in a Dr.! I am very grateful to you for your help and knowledge and will keep my fingers crossed that the exercise/osteopath work better than you expect. How does Lisanna feel about the potential for fusion in the future? Please keep us updated when you have time!

[gerbo]

thanks

i'll try to stop feeling sorry for myself

L is just happy being braceless, I don't think she has a clue what fusion might entail and mean in practice, might be better for now

and yes, I will keep you updated of new developments as and when they occur

.....and thanks again

[MATJESNIC]

Gerbo,

Hang in there. I feel sorry for myself many times, and for Nicole, of course. Other times I think, "What am I carrying on for?" It varies from day to day. We are all rooting for Lisanna and we will help get you through anything you will be facing. This support group has been so necessary for me. I hope you find comfort in it, as well.

[jillw]

Gerbo, Scoli su**s and if I were in your shoes (and I very well may be in the future) I would also be feeling very bad and sorry for my daughter. I think you have every right to feel that way (and we can't really control how we feel anyway, can we?)

I'm glad she's enjoying her brace free time but it must be very hard for you knowing that at some point she may be forced to learn the reality of fusion surgery. I think the hardest part of our "journey" so far was when I learned all the implications of what might lie ahead for Katie but she was still innocently ignorant. She's still ignorant, of course, in most ways but at least she's gotten used to the idea of wearing a brace for a while. You have probably seen that Melissa is taking Nicole for her 6 month check up in a couple weeks. I hope that in a few months Melissa is posting that Nicole is back to dancing and able to perform at the level she previously had. I hope that will offer hope for you if Lisanna does eventually need fusion (and again, I'm hoping that she won't!)

[jillw]

Hi Melissa, it looks like we were posting at the same time... I was just "talking" about you!

[Mom37]

Mom37,

That is wonderful that Amanda is able to do so much SO soon!! I think I would hold off on the rollercoasters as long as possible too. Especially with the syrinx (Is it completely gone or has it reduced?). Emily has never been tall enough for big coasters, and also not too interested, but in March we will be going to Six Flags Over Georgia, and I have been getting worried about the bigger coasters and her CM/SM.

Thanks. Amanda will be doing her 1 year follow up since her 3 month post op for Chiari in April. She had enough reduction of the syrinxes to to spinal fusion 9 months later. Her neurosurgeion gave her clearance to do roller coasters so we aren't worried about the Chiari/SM. Check with Emily's doctor on the rides, but I bet it isn't much of an issue if any. Have fun at Six Flags.

[rtremb]

Gerbo:

You have been on this forum a lot longer than I have and probably already read all about these two things but I'll suggest them anyway in case you haven't.......

Did you try Rolfing for Lisanna? Esme's posture has really changed since she started having this done. Don't know about her curves yet but for sure she is standing up straighter. Worth looking into perhaps?

Also, Esme used to walk with her toes pointing outwards (like a duck). Her rolfer recommended Esme wear Superfeet pronator insoles. After wearing these for a few months Esme now walks with her feet straight even when she isn't wearing her shoes. There seems to be some belief this walking with the toes pointed outwards contributes to scoliosis.

Just a couple of suggestions sent with the best intentions.

Ruth

[emarismom]

Mom37,

Emily's NS did release her to do anything, including rollercoasters, ice skating, horseback riding, etc. It's just me being overly cautious. Since I know that the syrinx is there (even though it is a lot smaller), I still try to keep her safe from anything with jolting and jerking motions. As she gets older, it will get harder to say no, especially now that she is getting tall enough to ride more. On April 4 we will go for her next MRI. (This is the 5th, and its with sedation, Emily refuses to do it without). Every year since decompression the syrinx has gotten smaller, so I am keeping my fingers crossed that this year will be the same. I'll be keeping them crossed for Amanda too.

[Mom37]

Emarismom,

I understand. I am not sure what we will allow ride wish. We didn't have to worry about Six Flags until we got that approval and now it is opening tonight. She has a friend who wants to go in the next few days. We are not sure, and are not really thriled with the idea. She has been careful before so that I was really not worried. I think that you and I will just have to use our gut and decide. I think that she will need to test lower/smaller rides and work her way up to see what her body is comfortable with. I wish you the best. I hate to be too cautious, yet we don't want to do the wrong thing either. Let us know how the MRI goes if you can, and I'll try to do the same.

[WNCmom]

Hi Everyone--

We've been gone for the past 6 weeks and I just caught up with this thread. We have an appointment for our first 4-month check-up next Thursday. I'm quite nervous; I'm hoping against hope that Sidney's curve hasn't progressed (he grew an inch while we were gone--it was summer where we went), and worried that it has. I've been reading all your comments about curves that just won't stop no matter what. Perhaps Sidney, too, is headed to surgery eventually. But since he's only 12, I do wish we could hold off until he stops growing!

HaleyMom:
We are also in North Carolina, and I would be interested to know who your first ortho was (the one who said exercise and bracing would make no difference). Ours told us something similar... Who did you switch to (if you don't mind sharing)?

[rtremb]

Welcome Back Mary Ellen. Hope you had a good holiday. Hope all goes well Thursday - will be thinking of you both.
Esme isn't wearing her Spinecor at the moment - it seems to be really pulling her down & forward at the left shoulder and it is also hurting her hip. Tried without success to discuss this over the telephone with Dr. Coillard. Anyway, we go to Montreal on March 13th so we will be able to explore alternatives then with the doctors in person.
The rolfing (SI) is going really well and Esme's back seems a lot better to me (hope I am not misjudging this or I will be crushed). Her back looks flatter and she is standing up straighter all the time. When I run my fingers along her spine (I do this once a day or so - can't help it) it feels less curved. Miranda (her Rolfer) keeps saying her spine is unwinding/unravelling. Hope she is right. Miranda is showing Esme some new yoga moves too.
Ruth

[jillw]

Hi Mary Ellen, Good luck at the appointment! let us know how it goes (is it on the Thursday in 3 days or the Thursday the following week?) Katie's next appointment isn't until mid April and I'm already starting to get nervous so I can guess how you might feel.

Ruth, Esme's appointment is just around the corner also! I hope they are able to do something to make the brace feel/work better. I hope you get good news also.

[WNCmom]

Thanks for the good wishes, Jill and Ruth. Our appointment is Thursday March 6 in Atlanta. Off and on I've been in a real panic, but over the last few days I've felt calmer--I hope it lasts!

Ruth, the SI sounds really good. I'm looking forward to hearing how the March 13 appointment goes. It'll be here before you know it.

Mary Ellen

[wnorm]

I just got a SpineCor Brace

I'm a 55 year-old woman with untreated AIS. I just got my Spinecor Brace today from Dr.Louise Marcotte in Montreal. I feel pretty good. I have never felt staighter. I recommend it . Of course, today is my first day with it. Let's see how I feel after a week of looking slightly weird in clothes and feeling like I'm in a straight jacket. I guess I will get used to the inconvenience for the sake of avoiding a collapsed spine and spinal fusion. I welcome any questions.