Patient Medical Synopsis — Cleveland Clinic Consultation

Critical Surgical History — Must Be Disclosed to Every Specialist

This patient has undergone 5 shoulder surgeries across both shoulders (3 on the right, 2 on the left), related to connective tissue fragility consistent with confirmed hEDS. The first three repairs failed and required revision; the most recent surgery on each shoulder has since held, with no further dislocations. This history of repeated repair failure reflects compromised tissue integrity and must inform any procedural or surgical recommendation, including feeding tube placement.

Current Active Treatment — Please Build On Rather Than Duplicate

Duloxetine 60mg (visceral hyperalgesia / SNRI modulation) · Ketamine infusion therapy (in evaluation) · EMDR psychotherapy (scheduled — treating PTSD as upstream driver). This is a coherent, mechanism-targeted treatment stack. Specialist recommendations should complement this approach.

Read This First

hEDS Is the Lens for Everything

hEDS is the confirmed unifying diagnosis. Every other finding — GI, autonomic (POTS), and immune — should be interpreted through it. The clinical question is not "what is wrong with each organ" but "how is EDS driving systemic dysfunction, and what are the safest interventions given her connective tissue history."

Why We're Here

How This Journey Started

A HIDA gallbladder scan showed a low ejection fraction (28%), and on the strength of that number a gallbladder removal was scheduled — technically within range to operate. The operating surgeon reviewed her full workup and cautioned that, given her medical history, the gallbladder was unlikely to be the "golden goose." On that advice, surgery was declined. That decision — restraint over a technically-qualifying number — is what set the search for the real, systemic cause in motion and brought us to Cleveland Clinic.

Explore by System

System-by-System Briefing

hEDS

Confirmed foundation — the connective-tissue lens for everything else

Severe pain; structural, vascular & pancreatic causes excluded; a celiac plexus block restored eating

POTS

Disabling recurrent syncope; POTS strongly considered by her doctors but not yet confirmed; a dangerous heart-rhythm cause is unlikely (Holter) — pinning down the mechanism is a primary goal of this visit

Immune / Rheumatology

Positive ANA but no autoimmune disease identified; MCAS still to evaluate

Therapeutic Direction

Current Treatment Stack & Recommended Additions

Current Treatment Stack

Active · SNRI

Duloxetine 60mg

First-line for visceral hyperalgesia. Pain protocols sometimes use up to 120mg — if partial relief at 60mg, dose escalation worth discussing.

In Evaluation · Not Yet Underway

Ketamine Infusion

Well-supported for centrally sensitized pain with PTSD component. Dissociative effect overlaps therapeutically with EMDR.

Scheduled · Not Yet Underway

EMDR Psychotherapy

Strongest evidence base for PTSD. Growing literature for chronic pain and visceral hyperalgesia. Directly addresses upstream autonomic dysregulation.

Recommended Additions to Discuss at Cleveland Clinic

Celiac plexus block as ongoing therapy — not just diagnostic; repeated blocks or longer-acting neurolytic intervention; block efficacy is the most important data point and should be leveraged therapeutically
Spinal cord stimulation — emerging evidence specifically for visceral hyperalgesia and EDS-related enteric neuropathy; pain management evaluation recommended
Low-dose naltrexone (LDN) — meaningful evidence for visceral hyperalgesia, EDS-related pain, and autoimmune dysregulation; low risk profile; worth adding to current stack
Tricyclic antidepressants (amitriptyline) at low dose — complementary to duloxetine for visceral hyperalgesia if not contraindicated
Scrambler therapy / transcutaneous neuromodulation — non-invasive; evidence for centrally mediated abdominal pain