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brmorris
21st March 2010, 06:48 AM
Quick background... we live in Edmonton, Alberta, Canada and our second daughter was first diagnosed with Scoliosis at the age of 5- a single thoracic curve of about 15 degrees. She is now 7, we just saw a specialist about 3 weeks ago and have found out that her curve has progressed to about 23 degrees. Because of the progression, they are putting her into a brace. From what they have described, it is mostly like a Boston brace.

I have been doing hours of reading finding information on Scoliosis and what we can do now to prevent surgery. Her specialist has said that the magnitude of her curve is working for us, BUT! her age is really working against us because she is so young! He also told us that the only thing we can do is put a brace on her and hope that we happen to be part of the 70% to stop any further curving, but it won't fix what's already there. Well, with my reading and asking lots of questions, I have found that there are many other options... this is where we are at...

She gets the brace on Monday, however, I have found a pediatric chiropractor who has worked with scoliosis patients before and has seen a 15 to 20 degree improvement. We are also seeing a Rolfing specialist who has also worked with scoliosis before. I have also found a Pilates instructor who has helped scoliosis patients, even as young as 13- her curve has corrected itself about 20 degrees. He is preparing us a home program. I was just given a name of a physiotherapist who has worked a lot with children, but other than that, I am going to be in touch with her this week. She has also seen a friend of mine who is trained in CranioSacral Therapy, however, she doesn't really like going.

I've done a lot of reading about the Schroth method and thinks it's amazing! The closest physiotherapists for us is out to Toronto or Ottawa or down into the states- Seattle would be the closest. I was really hoping to find someone out this way- Alberta would be ideal, but even BC or out to Manitoba, since we have family there. Does anyone know of anyone?

Another question is about the brace. Our doctor has told us that this brace (most like the Boston) is the only one they really work with here, but are looking at the Cheneau brace. From what I've read, the Cheneau is far far superior. Does anyone know of somewhere in Canada, hopefully Western Canada that we could find out more about a Cheneau brace?

and... what am I missing? I really believe there is a lot more that I can do rather than sitting around and hoping we are part of the 70%! Although- I do know enough from my reading and talking with our doctor, that with her age and the progression we've already seen, doing "nothing" will most likely end with surgery. I'm not prepared to sit back and not put up a fight!

Thanks!
Rachelle

GillyG
21st March 2010, 10:51 PM
Hi there :welcome:

I'm afraid I can't answer any of your questions on bracing as I have never worn one (even post-op) but just wanted to welcome you to the site. I'm sure someone more helpful will be along soon. One thing we always advise our members though is that, if you go down the non-surgical/alternative therapy route, always stay under the care of a scoliosis specialist so that the curve can be monitored. Scoliosis has a nasty tendency to suddenly progress rapidly, especially during the adolescent growth spurts, which is why so many curves are discovered during this period.

crazylu
21st March 2010, 11:15 PM
First, a big hello to you from Ontario. Did the doctor's give a name to your daughters type of scoliosis or did they think it was idiopathic? My daughter is 13 and wearing a Spinecor brace, so I only know what I have read about other types of braces. As far as chiropractors and other therapies go, I again only know what I have read. We have seen a number of orthopedic surgeon and specialist's in regards to our daughters scoliosis, and none of them have seemed too keen on any alternative therapies. I think the fact that your daughter is so young is in your favour though, as far as searching out other types of therapy, as well as the bracing. Again welcome. Lu

brmorris
22nd March 2010, 12:03 AM
Thanks! I'm really glad I have found a group of people for support! It seems like a very daunting path we are on!

We are definitely staying with our scoliosis specialist. We are doing the alternative therapies along with bracing right now. They believe it's idiopathic, but they are doing an MRI in a couple weeks just to rule out anything else. She gets the brace tomorrow, then we go back to the scoliosis specialist the end of May. He wanted to see her 2 months after wearing it full time to do another x-ray to see what was happening. At that point, I do want to find out how often they will be checking her.

I know the growth spurts can be "dangerous" and that is one thing the specialist said was working against us- because she has so many years of growth yet!

We'll see tomorrow about the brace and possibly what else we can do!? Thanks again!
Rachelle

Lucy7
22nd March 2010, 02:08 AM
Hi Rachelle,

Welcome to SSO. I'm glad to hear that you will be staying with your scoliosis specialist. Pilates is certainly worth trying. However, I'm not so sure about the rolfing. Years ago I tried something called Muscle Activation Therapy and found it to be extremely painful and actually quite distressing - I cried all through it. All my therapist kept on saying was "if you think this is painful, you should try Rolfing!".

Apart from that I can only echo what Gilly said.

Take care and please keep us updated.

Lucy

Amazed Jean
22nd March 2010, 06:04 AM
Hello and Welcome to SSO. It sounds like you are on top of the situation. Getting as much info as you can, asking lots of questions and getting opinions from more than one source and asking more questions is the only way to go. You might want to keep a notebook with you so you can write down questions as you think of them and by all means take it with you everywhere. When you see the scoliosis specialist you might want to take another adult with to help you remember stuff because I promise you are going to forget some of it before you get home. Congratulate yourself on being on top of stuff.

brmorris
22nd March 2010, 07:32 AM
The lady I found for the Rolfing is very gentle. I've had a number of people of people tell me that- it can be painful- but she told me that it really shouldn't be like that! She has worked with many kids and we saw her for the first time yesterday. Kaeli loved her! She hit a couple sore spots, but as soon as Kaeli said "ouch", which she had told Kaeli from the start to tell her if anything was uncomfortable, she stopped!

And I do have a note paper that I take with me to all of the appointments to keep notes on every appt. we have. I've learned from our first daughter and dealing with some health issues that I have to keep notes for different doctors!

Thank you for the encouragement and more information! I'm always looking for more! Kaeli gets her brace tomorrow, and thankfully, she is very excited!!

crazylu
22nd March 2010, 01:09 PM
I hope all goes well today for your daughter. It sounds like she is a very upbeat young lady. Keep us posted on how it goes. By the way her name is beautiful. Some Irish perhaps? Lu

GillyG
22nd March 2010, 05:56 PM
Good luck with the brace. You and your daughter's positive attitudes will stand you in good stead through all this :)

Simon
23rd March 2010, 12:22 AM
Welcome sorry been away since thursday hope you enjoy this great support site any think you want to ask just fire away

brmorris
23rd March 2010, 05:45 AM
Thanks! We got the brace. It is actually called a TLSO (Thoracolumbar Orthosis for the Treatment of Scoliosis)... It's a hard brace that was molded to her while putting pressure where it needed to be. It is a combination of a Boston brace and Cheneau brace (what the orthotist told me today). He actually molds them and makes sure that there is a "3-D" pressure to the spine.

We go back to him in 2 weeks for him to check in and see how it's going, then we see her specialist and get x-rays with the brace on in 2 months. The orthotist said that with the brace, there should be about a 10 degree improvement. After that, we check in every 6 months.

Kaeli is doing really well. She wore it for about 3 hours today and even talked about sleeping with it, but after lying down with it for a while, she decided to give her body a break. I told her that I thought it was a good idea! (It will be soon enough, she will need to wear it all the time.) We had a small party with some friends over tonight celebrating her getting her brace and she loved it! They are close friends, so I thought it would be a safe and good intro. for her to others- and it was!

We'll see from here... thanks everyone!

stana29
23rd March 2010, 10:21 AM
Hello,

What a great idea abou the party and inviting friends around to introduce them to the brace :-)
My daughter wears Cheneau brace and she is much happier in it than in her previous Boston brace. I am glad your daughter got at least a mixture of both.

Now you got me thinking, I will probably organise a party for my daughter to mark to years of her wearing a brace in June ;-)

All the best with the brace treatment.

Stana

tonibunny
23rd March 2010, 10:21 AM
Hi Brmorris,

It sounds as though your orthotist has confused you a little. The TLSO stands for Thoraco-Lumbar-Sacral Orthosis, and is a generic name for any corset-style brace that doesn't come up to the neck. The Boston brace is a TLSO made from prefabricated parts (they sometimes use pads inside to exert pressure on the curves) whilst the Cheneau is simply a custom-moulded TLSO in which the orthotist has applied some force to derotate the spine.

In reality, a lot of custom-moulded TLSOs are created with spinal derotation. The braces I used to have at the RNOH in Stanmore were made like this. I'm not sure if there is anything else which sets the Cheneau apart from these.

I believe that custom-moulded TLSOs can be very effective at holding curves, and also that they're relatively comfy because they are tailor-made for the wearer. So fingers crossed it does the trick! :)

Toni xx

stana29
23rd March 2010, 01:46 PM
Hi Brmorris,

In reality, a lot of custom-moulded TLSOs are created with spinal derotation. The braces I used to have at the RNOH in Stanmore were made like this. I'm not sure if there is anything else which sets the Cheneau apart from these.


Toni xx

Hello Toni,
Did your custom-moulded TLSO allow for a large rib cage expansion?
Jessie's Cheneau brace does and apparently this is very important, her Boston brace (measured for) squeezed her rib cage so tightly that made her short of breath at times.
It would be interensting to see a picture of your old custom-moulded TLSO, Jessie's old ineffective measured for Boston brace and her very effective Cheneau brace as well as Brmorris's daughter's new brace for comparison.
Toni, I am not sure if you read this already but I believe there is a great article on Cheneau brace found via this link http://bracingscoliosis.com/cheneau.aspx
Stana

crazylu
23rd March 2010, 01:47 PM
Rachelle, I'm so glad that it went well for you yesterday. The party idea was fantastic. Your daughter is lucky to have such a thoughtful Mum. It sounds like you have a good team working with your daughter. All the best and hugs all round. Lu

brmorris
23rd March 2010, 09:03 PM
The party was fun and she loved it! She wants more of them now! ;) That's okay though- I'd rather that, then wanting to hide out!! Today is more tough- she wore it for just about 3 hours this morning and was really hurting by the time we took it off. She took a break for lunch and now has it back on again for the afternoon. We tried adjusting it a bit and that has seemed to do the trick! She really is doing amazing! It's me that is hurting!! (for her) :(

Yes, Toni- you are right, I just couldn't remember the exact words for the acronym! :D Anyhow, what you described is what I understood and from all my reading, it sounds really good. I guess we will see the end of May when she has a x-ray with the brace on! I will try to post a picture of of her brace. She wanted me to take pictures... so we did! We do have to adjust for the breathing though- I want to make sure that it's not "hurting" her breathing.

Stana- that's a great idea! I will have to remember that! How old is your daughter?

I know that Kaeli really wants to meet some other kids (particularly girls) about the same age and older that wear a brace too and are dealing with scoliosis. I have to figure out where I can get that information from! Any ideas?

Thanks again!! We are one day closer to getting it off!!
Rachelle

stana29
23rd March 2010, 09:54 PM
Hello,
Jessie is 8 and she has been wearing back braces for almost two years, her scoliosis developed after her partial tumour resection and it's believed that she has neuromuscular scoliosis which measures 59 degrees. Unfortuanely, Jessie was left to watch and wait when her scoliosis was diagnosed and measured 23 degree only to be brace at 32 degrees 6 months later. Her Boston brace didn't halt her curvature which progressed to 59 degrees. Her Cheneau brace halted this progression and her curve has been stable at 59 degrees for more than a year now.
I posted her pictures here already but feel free to have a look at her old Boston and her last Cheneau braces.
http://picasaweb.google.com/stanajessie/JessicaSBack#5317137942198401042
and Jessie's new Cheneau brace since January 2010
http://picasaweb.google.co.uk/stanajessie/PICTURES?authkey=Gv1sRgCNfOmqO_6oy-owE#5451935377601108306
All the best with getting used to the brace!
Stana

tonibunny
23rd March 2010, 11:28 PM
Hello Toni,
Did your custom-moulded TLSO allow for a large rib cage expansion?
Jessie's Cheneau brace does and apparently this is very important, her Boston brace (measured for) squeezed her rib cage so tightly that made her short of breath at times.
It would be interensting to see a picture of your old custom-moulded TLSO, Jessie's old ineffective measured for Boston brace and her very effective Cheneau brace as well as Brmorris's daughter's new brace for comparison.
Toni, I am not sure if you read this already but I believe there is a great article on Cheneau brace found via this link http://bracingscoliosis.com/cheneau.aspx
Stana


Hi Stana,

All but one of my braces were Milwaukees, for which the lumbar part (the pelvic girdle) was moulded using the frame Stanmore had which applied derotation - so I had room to breathe as the Milwaukee exerted pressure on the thoracic curve from a pad on the apical side. The last brace was a TLSO but it was for post-op protection rather than correction and didn't have any cutouts.

I've seen the way Cheneaus are moulded (there's a video of the casting process around somewhere) and that process is no different to the Stanmore custom moulding process (except they stand the patient in a frame too) so maybe the difference is in these cutouts as you say?

Sadly I don't have any photos which show my braces or casts in any detail. Although I wore them for 10 years, my mother didn't like the way they looked and there were very few photos taken which show them at all. The one time I had a school photo taken wearing a Milwaukee, my mother got very upset because they hadn't taken the brace off for the photo.

Toni xx

stana29
24th March 2010, 12:29 AM
Hello Toni,

Funny, you say that, I share the pain of your mum seeing you wearing the brace as I threw Jessie's second Boston brace in a recycling bin ;-) only to find out later her disappointment with me as she wanted to keep it for a display ;-) I kept her 1st Boston brace and her first Cheneau one as well and I guess that is enough to keep us remanding the large curve in her little body! I don't like Jessie wearing the brace but she has to and it became a huge part of our life, she is actually more comfortable having the brace on than off as she does not have to work her tummy and back muscles that hard.

Anyway, according to what you say, there might not be a huge difference in the custom-made TSLO and the Cheneau brace as both are moulded to the person's body and derotation is also involved in both cases however it seem that there is a huge difference in the measured for Boston brace which Jessie had before and the Cheneau brace she has now. I will never understand why she was measured for it at GOSH rather than moulded especially when her curve was developed after her surgery and was believed to progress quite fast.

brmorris
24th March 2010, 11:14 PM
I completely understand the "mom side" of this! It hurts me to see her hurting. Fortunately she is tougher than me! :) I always thought of myself as tough, but when it comes to my kids- I'm a wimp! From the "child side", we had to make sure and bring the camera and take pictures, and she loved the idea of having a party and wants more now! She has also already talked about saving it! She's doing great with the brace. She keeps asking me if she can put it on again. Her tummy muscles are definitely getting a workout!

Wow Stana! I read Jessie's story on the CaringBridge site. We have some other friends on there too- for something else. It's an amazing site! What a story! You are doing amazing! If you want to send me a private message, feel free, but I was wondering where you live? Is Jessie in contact with other kids with scoliosis or everything else she is dealing with? Would she be interested in communicating with Kaeli? Kaeli, I know, would love it! I haven't looked too much on the forum here, but was wondering if there was a "kid's place".? Our oldest daughter has uveitis and I'm part of a forum for that, and they have a "kid's place" where the kids can talk to each other. Erika really likes that! I like it for her too. Although, uveitis is much more rare. Kaeli really wants me to look into finding other kids who are dealing with scoliosis. I need to find out where I do this!?

Take care... prayers to you and your family! and especially Jessie!
Rachelle

tonibunny
24th March 2010, 11:21 PM
Hi Rachelle, I've PMed you regarding the kids' forum :)

stana29
25th March 2010, 03:52 PM
Hi there,
I would also be interested in any kids forum for Jessie to get involved!!!
We live in London and there are few children with back braces at Jessie's school as they have a center for children with special needs downstairs and the primary school kids ofter go downstairs to play with the children with special needs, paint with them, sing etc. so she does not feel alone ;-)
If you are far from London, perhaps they could write to each other :-)))
I am sure your daughter is tough, they all are! We have lots to learn from their courage, don't we?
Stana

tonibunny
25th March 2010, 08:16 PM
Have PMed you too Stana :)

brmorris
25th March 2010, 08:55 PM
We actually home school so as far as adapting, I'm sure it will be a little easier for the start to get used to wearing her brace. She is just more nervous when she has to go out, because she is not as used to dealing with others. But yes, they are so so strong! and yes, I can definitely learn from her! Once a week, Kaeli and her older sister (Erika) go to classes at a school. She was so excited to take her brace for show and tell today!! I'm was excited for her! The kids were great! This next week, I will be going with her to her Brownies group to introduce her brace and scoliosis to them. Kaeli is a little more nervous about this. She has already told everyone though, and continues to.

We are definitely far away. We live in Edmonton, Alberta, Canada! I know Kaeli would love to write to Jessie! I bought her a journal a bit ago, just after finding out she was going to get a brace. This seems to help her, but writing to a real live person would help even more!! :) I will PM you with our address! I would really like to talk to you more too!

Rachelle

spiritofbamboo
17th May 2010, 08:05 AM
Hi Brmorris,

It sounds as though your orthotist has confused you a little. The TLSO stands for Thoraco-Lumbar-Sacral Orthosis, and is a generic name for any corset-style brace that doesn't come up to the neck. The Boston brace is a TLSO made from prefabricated parts (they sometimes use pads inside to exert pressure on the curves) whilst the Cheneau is simply a custom-moulded TLSO in which the orthotist has applied some force to derotate the spine.

In reality, a lot of custom-moulded TLSOs are created with spinal derotation. The braces I used to have at the RNOH in Stanmore were made like this. I'm not sure if there is anything else which sets the Cheneau apart from these.


I believe that custom-moulded TLSOs can be very effective at holding curves, and also that they're relatively comfy because they are tailor-made for the wearer. So fingers crossed it does the trick! :)

Toni xx

Actually, from what I have read, the Cheneau Brace is a pretty sophisticated brace that has at about 40 or so points that must be specifically measured (depending upon the individual.) The Boston Brace and other TLSO's are padded at points to apply pressure generally whiile the cheneau is molded specifically to work with the entire spine and pelvis.

Brmorris,
I think you are doing a terrific job. The cranial work is essential because there are cranial restrictions that tug on the fascia through the rest of the body. Hardly anyone talks about this and I think it is a critical part for helping some scoliotics. When one releases the restrictions in the head, it can produce a significant effect on the spine and the paraspinal muscles. I have found this to be so with my clients. It may be that your daughter doesn't like the cranial work because it is deep internal work and it changes things profoundly. Who knows for sure.....

tonibunny
17th May 2010, 11:25 AM
Actually, from what I have read, the Cheneau Brace is a pretty sophisticated brace that has at about 40 or so points that must be specifically measured (depending upon the individual.) The Boston Brace and other TLSO's are padded at points to apply pressure generally whiile the cheneau is molded specifically to work with the entire spine and pelvis.



Yes, that's what I said, the Cheneau is custom-moulded. This is the same as the custom-moulded TLSOs produced at the Royal National Orthopaedic Hospital in Stanmore in the UK for many years; they are created whilst the patient stands in a frame and has derotation applied all the way down the spine and to the pelvis. Not all TLSOs are off the peg and then padded inside. However, it sounds like the Cheneau may provide a lot more in-brace correction than other braces, and it has specifically designed cutouts to help achieve this.

ponygirlsmom
23rd May 2010, 01:52 AM
Hi Rachelle, I don't come on this forum often so I am catching up a bit. My daughter has been wearing a Rigo-Cheneau brace since 12/08. She was 7 then, going on 9 now. She has done beautifully in it. Her curve was 35* OOB, and is now 11* OOB. She wore the brace full-time for 1+ years and now wears it 12 hours/day. We're pretty big fans of the R-C. Anyway, it's late for this and it seems like you're set, but I think Sick Kids in Toronto prescribes and fits the Cheneau. We are in the US and get the brace here but I have a friend in Toronto whose daughter is seen at Sick Kids. They actually get their Cheneau here in the States but I think it's available there--it was going to be a long wait so they came here. I know Toronto is probably thousands of miles from you but it's in the same country at least. If you have a need, you also can get the Cheneau in California, if that's closer and/or easier...Re finding kids for your daughter to communicate with, our orthotist here keeps a notebook of forms filled out by kids with how old they are, what their favorite things are, how they feel about scoli, etc, and contact email if parents are OK with that. Maybe your ortho does something similar? Hope all is going well.

redangel21
23rd July 2010, 01:04 AM
I think the boston brace is good..I have it and it is way better than the braces with neck parts to them.

lucida
15th August 2010, 12:13 AM
Hi new to this site and found your message.

I've had a very positive expeience with bowen technique, and althgough I wore a boston brace when I was younger i didn't wear it very well often taking it off and I really hated it. as an adult i think the bowen has helped my top curve significantly, also swimming and yoga have eased pain and stretched me out no doubt about it as I grow a good inch when im well exercised and flexible.

Cranial sacral ahs also been good for me but if your daughter doesn't like it maybe its too intense. Look into bowen tho if you have time its very gentle and non invasive and swimming just gives you time to enjoy your body without gravity and a brace.
xx