Are surgical risks in EDS exaggerated, underestimated, or simply misunderstood? And how can patients tell the difference between a promising treatment and an expensive procedure being marketed ahead of the evidence?
In this listener Q&A episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by recurring co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, to tackle some of the most difficult questions submitted by the Bendy Bodies community.
They begin with...
Are surgical risks in EDS exaggerated, underestimated, or simply misunderstood? And how can patients tell the difference between a promising treatment and an expensive procedure being marketed ahead of the evidence?
In this listener Q&A episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by recurring co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, to tackle some of the most difficult questions submitted by the Bendy Bodies community.
They begin with a candid discussion about surgery in EDS: why most patients do well, which complications are genuinely more likely, and why a surgeon’s technical experience and procedural volume may matter just as much as their understanding of EDS (Ehlers-Danlos Syndromes) and HSD (Hypermobility Spectrum Disorders). They also explain how poorly controlled mast cell activation can derail recovery and why preparation before surgery may be more important than simply being reassured that everything will be fine.
The conversation then turns to the striking mental health burden within the EDS and hypermobility population, including self-harm and cutting behaviors. Dr. Bluestein and Dr. Knight discuss why anxiety, depression, insomnia, and pain may sometimes reflect shared underlying biological drivers, and how treatments such as low dose naltrexone (LDN) may improve multiple symptoms at once when used thoughtfully.
Listener questions lead them into the increasingly controversial world of cervical instability treatment, including PRP, the PICL procedure, and cervical fusion. What evidence actually exists? Who may benefit? What are the risks? And could treating mast cell activation and other contributors first reduce symptoms enough to avoid an invasive procedure altogether?
They also take a critical look at IV infusion therapy, explaining when infusions may be medically appropriate, when they may cause more harm than benefit, and why clinics offering the same expensive infusion to nearly every patient before reviewing labs should immediately raise concern.
The episode closes with an honest assessment of what is currently known about the cause of hypermobile EDS (hEDS), whether epigenetics may play a role, and why patients should pause whenever a clinician recommends a highly prescriptive treatment before completing a proper diagnostic evaluation.
Takeaways:
EDS surgery risks are real, but fear-based messaging can be harmful too. Most patients do well, especially when they choose an experienced, high-volume surgeon and address factors such as mast cell activation syndrome (MCAS) before the procedure.
A kind surgeon is not necessarily a skilled surgeon. Bedside manner matters, but technical expertise, procedural volume, complication rates, and careful postoperative planning may matter even more.
Mental health symptoms in EDS should not automatically be dismissed as “just anxiety.” Pain, poor sleep, mast cell activation, autonomic dysfunction, inflammation, and other biological drivers can profoundly affect emotional health and may need to be treated alongside psychological support.
One treatment can sometimes improve far more than one symptom. When appropriately prescribed, low dose naltrexone (LDN) may improve pain, sleep, mood, anxiety, GI symptoms, and overall function by addressing shared underlying mechanisms.
PRP and the PICL procedure are promising options for carefully selected patients, particularly given the significant risks and irreversible nature of cervical fusion. While early experience is encouraging, we still need higher-quality studies to better define who benefits most, what the long-term outcomes are, and how these procedures compare with other treatment options.
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Want to learn more about the UVA EDS Center?
For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq
UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health
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