Surgical Issues for EDS and Hypermobility Disorders

1 day ago | James Samaniego | @jamesian51 | Comments (1)

Authors: Dr. Jason Lam & Sharon Hennessey

A question that often comes up during a medical visit for EDS/HSD, “is there anything that I need to be concerned about for surgery?” Over the next series of posts here, we will address this question.

To begin, it is clear for individuals living with EDS and related hypermobility spectrum disorders, the journey through surgery can be fraught with unique challenges. Many report adverse or suboptimal experiences during the perioperative period due to the complex interplay of tissue fragility, autonomic dysfunction, and potential mast cell reactions that are possible in this population. Standard surgical and anesthetic protocols may not be sufficient at times, leading to complications with wound healing, pain management, and recovery.

To better support both patients and their clinical teams, the "Trifecta Pre Operative" guide was developed by colleagues in Australia as a resource. It consolidates critical information and best-practice recommendations for managing patients with the co-occurring conditions of HSD/hEDS, Mast Cell Activation Syndrome, and Dysautonomia/POTS. The guide aims to foster a proactive, interdisciplinary approach, equipping medical professionals with the necessary knowledge to anticipate risks, tailor the care plan, and ultimately improve the safety and success of surgical outcomes for these complex patients.

Have you encountered perioperative issues you would like to share below?

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dlydailyhope | @dlydailyhope | 15 hours ago

I have had issues with surgeries and wound healing and just recently had cervical spine surgery. My incision is very sensitive and gets easily irritated. It burns, has some discharge, is red/swollen, itches, etc. I went to the emergency room the other day because I was concerned the incision is infected and didn’t want to ignore the potential of it to turn into sepsis. My surgeon will look at it this week at my 6 week follow-up appointment.

With my hypermobility, I have been hurt during surgery where positioning me before/during and after has caused some joint pain and/or bruising (have had 6 surgeries in 4 years). During physical therapy, I have been hurt when the therapist moves my joint (leg for example) in a way that extends it beyond a point and I cannot resist the movement so it injures the soft tissues (in this case, it was my bilateral gluteal tendinopathy and bilateral hamstring partial high grade tears plus cervical myelopathy spinal cord injury/weakness/numbness that also contributed).

My degenerative disc disease in my spine is most likely due to hypermobility and autoimmune issues.

It is definitely good to talk to your care team before surgery to let them know if you have issues with hypermobility of joints and wound/tissue healing.