Tuesday, May 28, 2024

EDS Consult-Responses

Pantages, Jason

Thank you to everyone who sent me ideas on this EDS consult. This was my first time posting on the listserv and it is great to know how much support we have in our field. I have copied the emails that were sent to me on recommendations for treatment. I will confer with the physician and let you all know what plan he decides to go with. Once again, thank you to everyone who helped me this situation.

Best regards,

Jason Pantages M.S., RO


This might work for creating traction using a cervical collar. I’m not sure what manufacturer’s recommendations for wearing time are, but see what your physician says.

EDS patients with neck pain are very difficult to handle with any cervical orthosis. The problem with a standard orthosis like the Aspen Vista is it is dependent on the chin and shoulders for support. The position described for relieving the neck pain is allowing the patient to extend without upward force to gain relief. Normally a patient with these issues would be in a CTO with significant support distributed over a large surface area. A custom Minerva is a good example of an orthosis that could give maximum control but in order to prevent dislocation of the shoulders you need to use a wide surface area of the chest shoulder and back for the frame. Other options include using a CTLO that use the hip and mid section for an anchor instead of the shoulder. There are a number of combinations using plastic frames and metal frames to hold the cervical orthosis and connect it to the thoraco-lumbar section. Without seeing the patient and not knowing at what point the loose joints shift it is hard to tell you exactly what type of CTO or CTLO would work better.

Each EDS patient has certain limitations that govern what orthosis works best.

This patient population responds well to compression suits or devices. You may also want to consider the Head Master cervical device. I would be hesitate to apply manual traction with a device on this population as their soft tissue is already hyper flexible. You do not want to stretch it more. Just some thoughts. Good luck

This sounds like a challenging situation. I suppose one of the factors that I would consider is what are the parameters for when the patient needs the support. In other words is this meant to be a full time orthosis whenever the patient is erect? The Vista is a good option since it can be adjusted so easily. I have seen patients wear a simple soft cervical collar backwards (taller part on the posterior and shorter part under the chin). This may provide enough support of the occiput to provide relief while not pressing too hard on the TMJ or shoulders. You could play around with customizing the collar. May want to start with a larger size than you need, removing the stockinette and then shaping the foam to fit the patient’s anatomy more closely. The foam may not be strong enough to hold the weight of the head but may be worth considering.

I developed a “micro-specialty” by default after seeing a number of EDS patients in a very short time span. In general I found type 3 and 4 EDS patients do not tolerate any kind of “rigid” orthoses at all. Rather, they did best with devices that served to guide instead of controlling or stopping motion. Rigid mechanical stops merely serve to move the dislocation to the next vulnerable joint.

In the case described the Aspen with its adjustable anterior component is useful. The Philadelphia collar with and adjustable anterior can be useful. Consider adding the soft thoracic extension to either to temporarily move the loading/stress pattern.

All are only temporary.

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