Monday, March 29, 2010

The Rigo-Cheneau System Brace, and The Short Version of Treatments Til Now

Originally posted 3/29/2010

Apparently, I needed a little time to live with the new brace before posting about it.  We got home with it a little over two weeks ago. 


The trip was wonderful, far better than we could have hoped for.  We took several exciting modes of transportation, saw snow, stayed one night in a hotel and two nights with friends who have toys, played outside, and got a new brace.  The Dude thoroughly enjoyed the transportation.  He loved the hotel and the friends.  He handeled the brace process remarkably well, and he made many people smile all over the east coast.

So here's a little sum-up of his scoliosis treatments to date, to give you the picture of our journey thus far.

The Dude was casted using EDF/Mehta method for just over a year, and had a series of 7 casts, most of which had shoulder straps. The last three casts gave no lasting correction, so he was transitioned to a Providence brace (night only). That was in November, 2008--his curves measured 29 and 22. A year later, December 2009, his curves had progressed to 39 and 24.

We had a consult with a doctor about VBS (vertebral body stapling) when The Dude came out of casts, but learned that his curves then were too great for vbs to work. It is an internal brace, essentially, that is meant to hold very mild curves. Also, his bones are still too soft to be a candidate.

So we stayed the course with the Providence brace until we learned it was not holding him.

We learned about the Rigo-Cheneau system brace from a Schroth physical therapist. This type of brace addresses the three dimensions of scoliosis--I don't know for certain, but I read that this is the only type of brace to do that. Our casting doctor grew quite excited about this type of brace after calling and talking with the orthotist who makes it, and encouraged us to go for it--writing letters for our insurance company and a prescription for the new brace also.

We were scheduled to go get this brace made last month, but Snowmageddon cancelled our flight, so we went last week. (We still had to climb hills of dirty slush and snow that blocked the sidewalks, but at least the weather was balmy and clear!)

The process was amazing.

The orthotist carefully examined all The Dude's xrays, from the first to the most recent, and looked at photos of The Dude before casting, between casts, in casts, and after casting. We also gave him a chart of The Dude's measurements throughtout his journey so far. (All you parents of PIS kids, if you do not yet have a notebook with all this stuff, I highly recommend making one now!) He examined The Dude clinically also, observing his posture while sitting, standing, walking, and just being The Dude. He also looked at both of our Providence braces.


To make the R-C brace, the orthotist uses a special camera to take a 3-D image of the patient's body. That image is then transferred to a software application that allows him to manipulate the image and apply some correction to the shape of the body. Then, the data is transferred to a lathe which cuts a block of foam into the shape that will become the mold for the brace. After the lathe, the orthotist makes further refinements to the form by hand, which takes a couple of hours more. Finally, he molds the plastic for the brace around it.

Then the process of fitting begins. At first, there is no padding on the brace at all. The orthotist makes marks on it to begin cutting it down to size little by little, top and bottom. He flares it in places and trims in places, adds padding, and gets a good, comfortable fit.


Then we took it home for The Dude to wear that night. In the morning, we checked for pressure points (red marks) and returned to his office for further adjustments. The Dude had been complaining that it hurt his tummy, so the orthotist cut a tummy hole. He also put in some ventilation holes all around the brace. He added some straps inside to push against the curves, and a strap over The Dude's right shoulder to help balance his shoulders. (His right shoulder is higher than his left due to his scoli.) The brace pushes up under the left shoulder. In the brace, he looks very good.

By the way, this is exactly opposite what the Prov does--it pushes way up under his right shoulder--they said that it has to do that to push in against his curve (which we have since learned meant only the lower curve, as the Providence brace cannot treat curves as high on the spine as The Dude's upper curve).  We feel a lot more optimistic about this different configuration, which manages to both push in against both of the curves, and up on the left/down on the right, thereby forcing that upper curve into better alignment.

The brace itself is quite lightweight. Whereas the Prov seems to be mostly a thick layer of padding and is heavier than the R-C brace, the R-C brace has very little padding. It does not need it. It is barely noticeable under The Dude's clothing! The shoulder strap is a type of elasticized velcro, and barely peeks out from under the neckline of his shirt. It is cut high enough in front to allow him to bend his legs up 90 degrees (unlike his casts!), but still it achieves purchase against his hips to gain the needed vertical correction--it does that by having fairly deep indentations just above his hips and going down lower in the rear/sides.

The Dude is not happy about having to wear this brace night AND day, but it is not an uncomfortable brace. Just being in a brace is not fun, but I think if a child has to be in one, this would be a pretty good one to be in.

We do not yet have an in-brace xray. Their method is to allow the child's body to adjust to the brace for about a month before getting the in-brace xray. This seems to make very good sense to me, especially after seeing the brace-making process, and how organic and body-patient-specific it is. If the in-brace xray looks good, we will then wait about 5 or 6 months and get an out-of-brace xray. The expectation is that this brace will last until he gains about 8 pounds, or about 9 months.



I cannot say enough good things about our orthotist. He was absolutely wonderful to work with, and is a very compassionate, devoted professional. If anyone wants to talk with me about it, I would be happy to answer any questions.  Just leave me a comment and I'll do my best.

6 comments:

  1. I am so happy you are pleased with the new brace. I pray this is what Todd needs and will improve his curve. I love his happy face in this pictures. I am sure he will get use to it as time passes on.

    ReplyDelete
  2. Hi - we've been following the dude's journey since our son's diagnosis in Nov 08. Your writing has been just a breath of fresh air, I really can't emphasize that enough. We're really interested in the orthotist you love so much. Please do share if you can - Gregor Clark/Amanda Ansorge. Our son is Guthrie, and he is a lot like your son. 3 1/2, 45 degrees in brace right now, casting did not change his prognosis, staring down the barrel at growing rods. He doesn't have the awareness yet that your son does - the playground story is heartbreaking. But we're trying to throw a net beyond casting now and R-C is of great interest. Thanks - gregor@catmanandmary.com

    ReplyDelete
  3. How has he done since wearing the brace? I might be interested in this brace for both my daughter and son. Can you email me? poohlvr1020@yahoo.com.

    ReplyDelete
  4. Hi - It looks like you went to the same orthotist that I am about to take my daughter to in a week and a half. Do you care to share more in depth about your experience? I have spoke with him on the phone and he is very nice and seems to care deeply about what he does. Please contact me at kirstenyoder@gmail.com

    Thanks!

    ReplyDelete
  5. Thanks for your wonderful posts! I too am seeing Luke for my 13 year old son. Yesterday, day 4 with the brace, was rough. I kept thinking how it would be easier if he were little still and I could tell him what to do. Thanks for reminding me that even littles facing this challenge ARE a challenge! We managed to go out for dinner together in the end. Baby steps. Sending prayers your way..

    ReplyDelete
  6. So glad I found this site. I have been trying to find somewhere to share our good news and reviews about Luke Strikeleather. I can't say enough good things about him. HE IS FABULOUS. My daughter was diagnosed with scoliosis at age 4 by our pediatrician. After monitoring the curve and seeing progression we elected to go with the Rigo Cheneau Brace (after doing lots of research on bracing). We took Maia to see him and she was fitted for her brace. Luke was amazing. Starting at 5 years old Maia had to wear her brace at least 23 hours a day for the first year. Then the scoliosis showed improvement (from 24 degrees to 12 degrees). So then she was able to only wear the brace 12 hours a day. As of May 7,2012 Maia's most recent xray shows NO CURVE at all. Maia is now on a brace holiday until September. We can't thank Luke enough. Thanks for having this website too.

    Tracy Morgan

    ReplyDelete

Please drop me a line here but note that comments are moderated and will not appear on the site until they are approved. Thanks for joining me on this journey!