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Perioperative Pearls for EDS and HSD Patients: What to Know Before Surgery: Part 1

Jul 25 1:06pm | James Samaniego | @jamesian51 | Comments (2)

Author: Sajan Gajarawala, Research Intern

Surgery for patients with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) can be a very complex process as we discussed previously, but being aware of the unique considerations can ease stress or any uncertainty. Here are some key tips or perioperative pearls to help you and your care team prepare for a smoother surgical experience.

  1. Planning Ahead Makes a Big Difference

Early planning is essential; therefore, your care team should be aware of:

  • Your specific diagnosis and subtype even if it is not commonly discussed
  • Any history of bleeding, poor wound healing, or issues with anesthesia
  • Joint instability or other symptoms that may stall or affect recovery
  1. What to Expect with Anesthesia

Anesthesia can be unpredictable for patients with EDS and HSD, so it is important for your care team to know:

  • How you react to medications (more sensitive or more resistant)
  • Any spine instability or airway fragility
  • Your diagnosis and medical history thoroughly and in advance so a plan for anesthesia can be made accordingly.
  1. Positioning and Compression Injuries

EDS and HSD patients are more prone to joint dislocations and nerve compression injuries, especially during longer procedures

Your surgical team should:

  • Use extra padding to help with joint support
  • Avoid overstretching limbs
  • Reassess positioning throughout the procedure

These small adjustments can help prevent complications and speed up recovery.

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emo | @emo | Sep 11 8:12am

I know this is unrelated to the above post, but I'm curious if there has been any news about what will happen to the EDS Clinic at Mayo Jacksonville when/now that Dr. Knight leaves his position, and the patients established with and waiting to be seen? I've been very transparent about not having the most positive experience, mostly because of organizational challenges, but they were always kind to me when we were able to overcome the communication and administrative challenges. And as a patient, we were always told we could contact the clinic to return if and when we experienced a significant life change that affected our condition. I'm disappointed Mayo didn't or couldn't invest more in EDS and POTS care.

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Colleen Young, Connect Director | @colleenyoung | Sep 11 10:22am
In reply to @emo "I know this is unrelated to the above post, but I'm curious if there has been..." + (show)
Profile picture for emo @emo

I know this is unrelated to the above post, but I'm curious if there has been any news about what will happen to the EDS Clinic at Mayo Jacksonville when/now that Dr. Knight leaves his position, and the patients established with and waiting to be seen? I've been very transparent about not having the most positive experience, mostly because of organizational challenges, but they were always kind to me when we were able to overcome the communication and administrative challenges. And as a patient, we were always told we could contact the clinic to return if and when we experienced a significant life change that affected our condition. I'm disappointed Mayo didn't or couldn't invest more in EDS and POTS care.

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@emo, Mayo Clinic continues to support EDS and POTs care and invests in EDS research. As always, you can reach the Ehlers-Danlos Syndrome care team through your patient account on the the Mayo Clinic Patient Portal or by phone at 904-953-0869.

For any other questions regarding appointment, you can contact Mayo Clinic's central contact offices by location https://mayocl.in/1mtmR63

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