Patient Medical Synopsis — Cleveland Clinic Consultation

Confirmed Diagnosis

Foundation: Hypermobile Ehlers-Danlos Syndrome

hEDS is the confirmed unifying diagnosis and must serve as the interpretive lens for all other conditions.

hEDS is a systemic connective tissue disorder affecting joints, blood vessel walls, gut walls, mesenteric ligaments, and nerve sheaths. The collagen that gives ligaments, joint capsules, and vessel walls their strength is faulty rather than absent, leaving tissue throughout the body lax and fragile. Her joint instability is generalized: beyond the shoulders — her most surgically significant joints — she has recurrent subluxation or dislocation of the jaw (including during sleep), collarbone, hips, elbows, knees, and ankles, reflecting the body-wide ligamentous laxity characteristic of hEDS. Every specialist should know this diagnosis before making any recommendation.

Critical History

Surgical History

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 Status

hEDS & Musculoskeletal Picture

hEDS✓ Confirmed

Confirmed — foundation diagnosis; systemic connective tissue disorder driven by faulty collagen

Generalized Joint InstabilityhEDS feature

Recurrent subluxation/dislocation of the jaw (including during sleep), collarbone, hips, elbows, knees, and ankles — body-wide ligamentous laxity from hEDS; shoulders the most surgically significant

5 Shoulder Surgeries (3 right, 2 left)⚠ Critical flag

Critical flag — the first three repairs failed and required revision (connective tissue fragility); the most recent on each shoulder has held. History of repeated repair failure must inform all future procedural decisions

Condition	Status & EDS Connection
hEDS✓ Confirmed	Confirmed — foundation diagnosis; systemic connective tissue disorder driven by faulty collagen
Generalized Joint InstabilityhEDS feature	Recurrent subluxation/dislocation of the jaw (including during sleep), collarbone, hips, elbows, knees, and ankles — body-wide ligamentous laxity from hEDS; shoulders the most surgically significant
5 Shoulder Surgeries (3 right, 2 left)⚠ Critical flag	Critical flag — the first three repairs failed and required revision (connective tissue fragility); the most recent on each shoulder has held. History of repeated repair failure must inform all future procedural decisions

Action Items

Requests Related to hEDS

Specialist Consults to Request

Rheumatology — comprehensive hEDS / POTS / MCAS triad evaluation using the full 2017 revised hEDS criteria

Key Questions

Has she been formally evaluated against the 2017 revised hEDS criteria, and is a genetics referral warranted to exclude vascular EDS given her surgical and tissue-fragility history?
Given confirmed hEDS, how should connective-tissue fragility change the risk calculus for any recommended procedure?