May 23, 2013

Currently, we are in Gensingen, Germany, here again in pursuit of additional skills and knowledge, this time learning the latest about German scoliosis bracing by Dr. Hans-Rudolf Weiss. Bracing for scoliosis, an integral part of scoliosis management for many, is usually recommended when an adolescent with idiopathic scoliosis advances to a moderate scoliosis. An effective brace can be an important component in the fight against progression.

Marc’s focus for most of our trip has been the Weiss – Chêneau, or Chêneau – Gensingen brace. Orthomed, creates Dr. Weiss’ effective, state-of-the-art scoliosis braces for scoliosis, kyphosis and even pain management braces for adults with scoliosis. This week, on occasion, I have found myself sitting and working while Marc alternates between seeing patients with Dr. Weiss or working with Brian, and the other orthotists. They have been incredibly generous with their time and skills and are instructing Marc in brace making from the ground up, an experience that will culminate in his making a brace from start to finish.

It’s been an action-packed week, full of unexpected insights, meetings, dinners and visits. It is interesting to watch the kids and families as they come in for brace fittings and adjustments. The opportunity is unexpected, but allows me to stop and reconsider how kids feel when going through a scoliosis system. It was more than twelve years ago when we were the parents accompanying the child for the brace fitting, knowing little about scoliosis. Our life changed completely as a result of that experience. Watching the people here takes me back, and forward. Sitting here makes me realize I never want to have to accompany another family member, ever, to be fit for a scoliosis brace. However, once scoliosis is in a bloodline families must be vigilant. At least now, there is some comfort in knowing that if any future generations require bracing, this time we’ll have access to the right brace!

I watch kids walk in and out carrying their braces with their personal design imprint displayed: snakeskin, bright teal, comic strips, or images of sports equipment adorn the polyethylene plastic from which the most advanced versions of Chêneau type braces are formed. It is probably a welcome break for the kids to be carrying their braces rather than wearing them – even if only for a short part of the day.

To me, most of the kids who enter have an easily recognizable scoliosis or kyphosis: a low shoulder, an unlevel hip, or a rounded back. They are adolescents, who, without the brace, or close scrutiny, look physically typical to the unknowledgeable observer. The way they look out of brace is a credit to the bracing system. Orthomed has a foosball table and a flat screen TV, one example of how they to make the experience as upbeat as possible.

Among the patients are two sets of siblings, a pair of sisters with scoliosis and a pair of brothers with kyphosis. One of the sisters is in a photo referenced in the paper recently co-authored by Weiss and Moramarco on the benefits of the Chêneau – Gensingen brace. To learn more about this brace, created to exacting standards, read: Remodeling of trunk and backshape deformities in patients with scoliosis using standardized asymmetric computer aided design/computer-aided manufacturing braces.”

I work and observe. I know these kids are being fit for the best possible brace offered internationally, but understandably, the room is still quiet and serious. Even with the best brace, a fitting is not an experience a child wakes up excited for in the morning. Fortunately, there are no panic attacks or tears, like stories I’ve heard from parents in the U.S..

Most of the kids seem matter of fact, but one has a look that could be construed as sad, and another, grim. The girl and her mother do not utter a word. The siblings seem to have the best attitudes. I imagine there may be some small comfort having a family member who can relate to the experience.

The gender breakdown has been in line with what is expected for scoliosis: mostly girls and a few boys. There are a couple of girls who entered the offices without braces in their hands. They will be fit and measured for the first time, perhaps explaining the grim expression, probably fear, but she will find out there is no need.

The youngest patient appears to be about eleven years old. When she is called in for her brace measurements, she is accompanied by her older sister who speaks fluent English since they are not German. Their mother approached me after they went in because it is apparent I am from the US. She had overheard a conversation I was having earlier so she came and introduced herself as being from Bulgaria. She expressed curiosity about scoliosis treatment and bracing in the US and we did our best to have a conversation.

Like their American counterparts, most of the German adolescents waiting to have their braces checked have their necks tipped and eyes fixated on the screen of the latest electronic device – probably a good distraction. Kids are called in, then return to wait. Everyone is incredibly patient. Brace fitting, done correctly, is a process: first science, then art. Noises come from the shop area where they are carving and trimming braces, tweaking the fit perfectly so the brace will be effective, yet tolerable, and without discomfort.

Dr. Weiss is completely committed to making sure each child’s brace is as comfortable as possible. It goes without saying, but the more tolerable the brace wearing experience, the better the chance for an optimal outcome with the least impact from a psychological standpoint. Marc, Dr. Weiss and I have all discussed this subject, at length, and are sensitive to the emotional impact of bracing on adolescents with scoliosis. Bracing our daughter when she was twelve is a memory both Marc and I would prefer to forget – and we were not the one wearing the brace! I still have terrible feelings of guilt and remorse for unknowingly making her wear the wrong brace twenty-three hours per day. We did our due diligence, but our mistake was to trust the company’s propaganda and our well-intentioned doctors who led us down the wrong path after they were pitched a bill of goods. With that said, the bad bracing experience led us here to Germany, the Schroth Method,  Dr. Weiss, our friend Axel and of course, Frau Christa. Our experiences are what has inspired us to share what we have learned with other families and continue to build expertise to continue raising awareness about the German methods we have come to realize are best at managing scoliosis as opposed to traditional offerings via scoliosis doctors in the US.

Bracing must sometimes be a part of the proper management of a progressing scoliosis. Considering, the scoliosis brace is designed to corral an adolescent during what should be the carefree years, the mood here is pretty good, perhaps because the product is the best available.

The most effective scoliosis brace in conjunction with German scoliosis exercises can make a substantial difference over the course of a lifetime and the two together is the management program of choice. Learning what to do, physically, via curve pattern exercises and ADL’s, to halt progression or potentially improve scoliosis is enlightening and empowering. Adolescents who are active participants in their spinal destiny find the scoliosis exercise approach to be a refreshing change from the historical course of treatment in the U.S.. Having the confidence, as a parent, to know you are pursuing the best course of treatment for you child can provide an element of comfort and perhaps, even some peace of mind. To learn more about the German methods of treating scoliosis for an effective and empowering alternative treatment approach, contact us at Scoliosis 3DC®. We are here to help.

What Scoliosis 3DC® Patients Are Saying

State of the Art

“I think the work you do is state of the art, and I like the professional but very comfortable way you share information and knowledge. The passion you have for your work is unmatched.” Read More

Brace Was a Success

“M’s first day back to school with her brace was a success! She had it on 19 hours! She’s wearing it from bed time until she gets home from school which will be about 19 hours a day. M(sister) is wearing hers from 6pm until 7am to get in her 13 hours. So far so… Read More