View Full Version : It's been a long time.....

16th May 2006, 03:50 PM
I was thinking the other day, that I haven't posted in this ol' familiar ground for a long time :cry: We have our 6 month followup with Dr. Rivard in Montreal on Thursday and I really don't expect any surprises - Deirdre's back STILL looks AMAZING considering where we started a few short years ago... I think we've done something right :niceone: I hope everyone is well and living life to the fullest. Give your kids a hug from me :squeeze: Oh, give yourself a big hug from me too.

16th May 2006, 05:37 PM
Congrats Sealy, it's so good to hear that Deirdre continues to have success with the Spinecor brace :-) Hopefully this is a good sign that the Spinecor is being proven to work, and doctors will eventually choose to use it in place of more uncomfortable braces and casts. Great work :D

Toni xxx

17th May 2006, 03:54 PM

I hope so too ! Quality of life for children with scoliosis is greatly improved with the Spinecor brace. It works best for curves under 30 degrees - there are actually documented cases of total curve correction after wearing the Spinecor brace for two years. Current bracing methods are in sorry need of an overhaul - most orthopaedic doctors don't believe in rigid bracing. STILL....I don't think we can blame bracing completely for it's failure - I think orthopaedic doctors who fail to treat children when curves are still below 30 degrees are to blame. They know full well that bracing after the curve progresses beyond 30 degrees is unlikely to do much good and these children will probably end up with spinal fusion.

Hope all is well Toni, take care of yourself....


17th May 2006, 11:17 PM
Hi sealy

I just wanted to say i'm so glad things are going fantastic with Deirdre and i really pray that things arent going to change and you and your family can move forward. I enjoy reading your posts so don't go too far


18th May 2006, 10:09 PM
Mark, I don't think you got rid of me just yet :-D Just a quickie update from Montreal.....Deirdre has grown 3 cm and is "1" degree in the Spinecor brace. *phew* :clap:

22nd May 2006, 02:36 PM
That's great news Sealy. I'm glad the spinecor is working for you. Unfortunately it's something that we'll never get to try, but it's really pleasing to see it working so well. :D

29th May 2006, 10:36 PM
Sealy, that is great news, glad to hear that all is going so well.
Andrea, how are things with you?
Nicola :squeeze:

30th May 2006, 04:20 PM
I was wondering how you two ladies were doing :-D Nicola, you still haven't changed that cat's expression :bear:

30th May 2006, 09:53 PM
Things with us are still the same, thanks for asking. We're back at STanmore on 20 June for another push, and then we'll go from there. I don't really want her casted every 6 weeks for too much longer - I just think it's too much. We've got a catch up with Mr Taylor in September to view her progress, or lack of it, and we'll see what he has to say.

Erin is still the cheeky little monkey she always was -3 going on 13!

30th May 2006, 10:16 PM
You have finally shamed me into changing it, I am so incredibly lazy!!
I think this one is more appropriate, what do you think??
Andrea, I don't blame you for not wanting to continue being casted every 6 weeks, it is very stressful, both for you and Erin.
Fingers crossed that Mr. Taylor may be able to get you back on the right track.
Niamh is doing great, more like nearly 3 going on 30 here though.
I still have not managed to get her measurements from her last x-rays, it is on my to do list although in reality it is not going to do anything that possibly annoy me if they are not as good as I hope so I may just hold off till her next cast on the 13th July. This will be the last cast she will have with our current surgeon as he is retiring in August.
Keep in touch the two of you :squeeze:

30th May 2006, 10:25 PM
Nicola - get those measurements!! We made the mistake of cruising along without getting measurements for a few months, and then when we did, it was such a shock to me that I just broke down in the consultants room - the first time I have ever done that. Had we know it was getting worse we would not have been so shocked.

I'm sure Niamh is doing great though - she certainly sounds like she is. I'm sure it won't be a disappointment.

I know Mr T won't wave a magic wand and make it all better, but at least i'll know if he thinks growing rods are the best way to go. I guess at some point Erin will move to a brace, and I just don't want her to get worse until an op won't give her a good correction, if that makes sense. I'm waffling now - 2 glasses of wine and this is what happens!

31st May 2006, 12:58 AM
Andrea - great to see you back on posting again - we've missed you! I hope the cast change goes well on the 20th, and indeed the appointment with Taylor in september!

We are all here for you..... :squeeze:

31st May 2006, 04:05 PM

LOVE the new you ! :kiss:


You can't stop kids from being kids, no matter what medical issues they have!

What a tough decision you now face, whether to continue with casting or submit to surgery. What is the difference between growth rods and the veptr ? I know that growth rods involve some degree of fusion and the vetpr doesn't involve the spine at all ?

Big hugs going your way :squeeze:

2nd June 2006, 11:12 AM
Hi Andrea,

I don't know if this helps at all, but at Erin's age and with similar sized curves I was in casts during the winter and braces during the summer. The braces lasted 6 months or more, and although they were Milwaukees I didn't have them adjusted for growth, so I guess a TLSO (corset-style brace) would last that long too. They usually change casts every 6-8 weeks for hygene reasons, and not because the child has outgrown the cast in that time.

Basically, what I'm trying to say is that if you can get Erin into braces, you'd probably only need to go and have them changed every 6 months or so, which would hopefully be a lot less disruptive to your lives :-) After all this time in casts I bet she would take to a TLSO really happily!

Toni xx

4th June 2006, 11:38 PM
Hi Toni. Erin can't wait to go into a brace. She asks me all the time whether she'll get a brace this summer as she did last summer. Mr L had plans to cast her for a brace, but agreed with us that it wasn't a good idea as he couldn't get the curve down to a level he was happy with.

My only concern with a brace is that the last time she had one, the curve deteriorated by nearly 30 degrees, which is quite considerable in 2 months. She went into it at 34 degrees, and then when she was measured again in September, in her first cast since the brace, she was 61 - back where we started.

Hopefully we'll begin to see some stability or improvement soon.

Thanks :squeeze:

Sealy - I haven't read up fully on the differences, although I didn't think that growing rods involved fusion. I thought the main difference was the attachment of the rods to ribs or vertebrae. I guess I'll need to read up on them both fairly soon!

5th June 2006, 10:49 AM
I think generally growth rods are only associated with fusion when they're used to treat congenital scoliosis - for example a hemivertebrectomy at say T5 with fusion of T4 to T6, and growth rods. With an idiopathic curve I suspect they'd just be used on their own. I could be wrong on that, but it seems to be what I recall from my days on the MIT list.

I hope things settle down enough to make a brace a good option again :squeeze:

5th June 2006, 04:03 PM

I'm saddened to hear that Erin's curve progressed so much within two months! I can see why you are so reluctant to get her back into a brace. There are so many things to consider - the most important of which is lung function - this is something I would be very concerned about. I think it's very prudent to look into alternatives.

There is halo traction followed by casting. I think growth rods are more invasive than the VEPTR since they involve the vertebrae. How do they secure the growth rods to the vertebrae? Wouldnít they have to fuse the rods into place? Iíve read that over time Ė 2 or 3 years - the vertebrae become very rigid and doctors are not able to get as much correction and there is some stunting of vertebral growth. A few growth rod studies have also shown that post fusion correction at maturity is not much different than the initial curve before all the growth rod surgeries. Another thing Iíve read is that the recovery time for growth rod surgery is much longer than for the VEPTR.

The VEPTR is a "new" procedure and itís not without complications Ė i.e., rod migration through the ribs.

Anyway..... just some questions to ask your consultant next time you see him/her.

Give Erin a big hug from me
:squeeze: :squeeze: :squeeze: :squeeze:

6th June 2006, 04:06 AM
There is certainly some stunting of growth when growth rods are used, but growth rods in the first place are an alternative to fusion to minimise the overall height loss while still applying powerful corrective forces. As far as I know, the general procedure is to fuse two or three vertebrae completely above the curve, and fuse two or three completely below, and apply the adjustable distraction between those two fused portions. The vertebrae near the apex of the curve continue to be straightened and fusion is delayed until skeletal maturity (or close).