With constant progression, I have been working on modifying and tweaking my comprehensive medical summary with chat GPT. This is a living document for as long as I keep living. There have already been progressions since this chat, because progressions just keep coming. But this still covers the bases by and large.
# Comprehensive Anchor Summary
**Severe EDS with Progressive Structural Failure, Multi-Level Spinal Instability, Rapid Neurologic Motor Decline, and Systemic Inflammatory Disease**
## 1. Core Disease Process: Severe Ehlers-Danlos Syndrome
I have severe Ehlers-Danlos Syndrome resulting in systemic connective tissue failure. This has caused:
* Progressive multi-joint instability and subluxations
* Ligamentous failure throughout the body
* Structural collapse across spinal and peripheral joints
* Early and aggressive degenerative change
This is a progressive, systemic structural failure disorder.
## 2. Cranio-Cervical Instability and Surgical History
I developed severe cranio-cervical instability requiring fusion.
I underwent **three cranio-cervical fusion surgeries** due to failure of the first two constructs, reflecting profound ligamentous insufficiency at the skull–cervical junction.
Despite fusion, instability has progressed to other regions of the spine.
## 3. Thoracic Spine Instability – A Critical Failure Point
Thoracic spine instability is a central and defining feature of my body’s mechanical collapse.
The thoracic region is structurally fragile and highly reactive. Minor positional shifts can trigger severe neurologic and pain responses.
This region now drives some of my most extreme and disabling symptoms.
## 4. 🔴 Dominant Thoracic Symptom: Repetitive, Severe Stabbing Neuropathic-Mechanical Pain
I experience what feels like **permanent knives embedded in four locations in my middle and upper back.**
These stabs:
* Occur likely hundreds of times per day
* Reach level 10 intensity
* Are triggered by minimal mechanical shifts
They are provoked by:
* Getting into or out of bed
* Lying down as posture adjusts
* Leaning forward (every sip of water)
* Coughing
* Laughing
* Crying
* Straining
* Arms hanging unsupported
* Any movement of my right arm, even when carefully supported
* Mid-sentence breathing transitions
* The top of inhale and bottom of exhale
At peak severity, breathing itself provokes stabbing pain.
There is extreme mechanical allodynia in the affected “hot zone.” Even light touch from clothing, fabric, a hand, or a transfer belt can trigger explosive electric pain.
This symptom now controls breathing, speech, hydration, posture, transfers, and physical contact.
Likely mechanism: severe thoracic instability with nerve irritation and secondary central sensitization.
This symptom has progressed rapidly and demonstrates increasing neurologic sensitivity.
## 5. Lower Spinal Instability, Tethered Cord, and Myelopathy
I had a tight filum terminale (occult tethered cord) and underwent lumbar laminectomy and filum sectioning at **L4 and L5**.
These laminectomies were performed without stabilization. In the setting of severe EDS, decompression without structural stabilization is biomechanically dangerous.
Excessive post-surgical movement appears directly correlated with progressive sacral instability.
I continue to experience:
* Lower spinal instability
* Symptoms consistent with myelopathy
* Progressive neurologic dysfunction
Surgery did not halt the broader instability process and may have contributed to long-term mechanical consequences in the lumbosacral region.
## 6. Neurogenic Bowel and Bladder
I have neurogenic bladder and bowel dysfunction due to spinal cord involvement.
My bladder is more than twice normal capacity, chronically stretched, and difficult to empty due to urinary retention.
My neurogenic bowel requires daily osmotic laxatives.
Even with laxatives, evacuation is incomplete due to a stretched rectum and anal region that does not allow stool to fully pass.
This represents structural and neurologic dysfunction of pelvic floor and autonomic control.
## 7. Rapid Neurologic Motor Failure
I am progressively losing neurologic access to my muscles.
This is not deconditioning. It reflects spinal cord and nerve involvement.
There has been rapid decline over a short period of time.
I now:
* Am barely able to bear weight even with assistance
* Am incapable of taking a single step
* Urgently require a Hoyer lift
* Require assistance placing my own limbs
* Cannot reliably reposition my arms or legs independently
* Am losing trunk stability and require assistance to sit upright
This decline is accelerating alongside increased joint subluxations.
## 8. End-Stage Shoulder Failure
My shoulders are at end-stage joint failure.
My arms must be fully supported at all times.
If unsupported, they hang from their sockets.
A single finger’s pressure can slide the joint further out of position, indicating severe and constant subluxation beyond its already unstable baseline.
These are failed joints.
Arm suspension significantly worsens thoracic instability and stabbing spinal pain.
## 9. Severe Peripheral Joint Failure – Wrists and Hands
My wrists are severely damaged by inflammatory arthritis and connective tissue failure.
They are deformed and claw-like.
They are excruciating to brace and unbrace.
I cannot lift even a cell phone.
I am unable to brush my own teeth due to hand and wrist instability/arthritis.
I eat with a baby spoon, and even that is often too heavy, even with rigid bracing.
I am increasingly unable to type on my phone and rely heavily on voice-to-text.
This represents advanced joint destruction, marked fine motor loss, and profound functional decline.
## 10. Lower Limb and Pelvic Instability
I experience severe pelvic instability and lower limb joint failure.
Daily hip subluxations occur, frequently during weight-bearing and consistently when sitting on the commode.
This represents a daily injury cycle with no opportunity for recovery.
Ambulation is no longer functionally possible.
Transfers are high risk and mechanically destabilizing.
### Knees
I have longstanding knee arthritis — the earliest arthritic manifestation, though not my earliest symptom overall.
The arthritis developed after years of systemic instability.
It is likely secondary to Miserable Malalignment Syndrome with chronic tibiofibular instability and years of progressive mechanical wear.
My knees:
* Do not fully straighten
* Do not bend past 90 degrees
* Demonstrate swelling
* Exhibit marked internal instability
* Recurrently subluxate
This represents one of the longest-standing structural deteriorations in my body.
## 11. Sacral Arthritis – Severe Structural Pain Focus
My sacrum is severely inflamed and arthritic and has been for approximately three years.
This sacral deterioration appears biomechanically linked to excessive movement following L4–L5 laminectomies performed without stabilization.
The pain is so severe that:
* I cannot sit in a normal seat
* My wheelchair requires a sacral cutout
* My mattress is constructed of layered memory foam with a hole cut out to prevent contact
Because body weight loads through the sacrum in sitting, standing, and lying, this inflammation makes all positions more unbearable.
## 12. Inflammatory Burden – Arthritis as an Accelerant
I have severe psoriatic arthritis contributing to systemic inflammation and structural deterioration.
Arthritis acts as an **accelerant** to connective tissue failure and degeneration.
Blood work has demonstrated markedly elevated inflammatory markers.
Inflammation compounds spinal instability, joint destruction, neurologic irritability, and pain amplification.
## 13. Mast Cell Activation Syndrome (MCAS)
MCAS is highly symptomatic and a major destabilizing factor.
I have a history of **anaphylaxis to cigarette smoke and products high in volatile organic compounds (VOCs).**
This significantly alters my risk profile in medical environments.
Symptoms include:
* Most severe fragrance intolerance
* Daily itching/allergies
* Systemic inflammatory flares
* Extreme chemical sensitivity
* Medication intolerance
* Extreme dietary restriction
My diet has been restricted to **five foods for years**, resulting in severe malnutrition and nutritional deficiencies.
I cannot take:
* Allergy medications
* Mast cell stabilizers
* Pain medications
* Antibiotics if infection occurs
* Topical lidocaine patches
This prevents adequate control of inflammation, allergic reactions, infection risk, and pain.
MCAS has confined me to my home for many years due to extreme fragrance and chemical sensitivity.
I have had no neurosurgical or spinal specialty care for approximately 13 years because I cannot safely access medical environments.
MCAS contributes both directly (through inflammation, anaphylaxis risk, malnutrition, allergies, immune activation) and indirectly (through lack of medical access) to disease progression.
## 14. Chronic Migraine – Longstanding Dominant Condition
I experience chronic migraine that never fully resolves.
Subtypes include:
* Vestibular migraine
* Migraine with visual aura
* Migraine with brainstem aura
* Episodes involving prolonged loss of consciousness
Migraine interplays with spinal instability and is significantly exacerbated by MCAS and fragrance exposure.
## 15. Secondary Muscle Failure
Due to instability, inflammation, and neurologic impairment, stabilizing musculature is failing.
This decline is rapid and ongoing.
Muscles cannot compensate for ligamentous collapse.
## 16. Prognosis
This is progressive systemic connective tissue failure compounded by severe inflammatory disease, malnutrition, prolonged lack of specialty care, escalating neurologic impairment, medication intolerance, and ongoing structural instability.
Without stabilization and access to appropriate care, further decline is expected.
# Plain Language Bottom Line
My connective tissue is failing throughout my body.
My spine is unstable at multiple levels, especially in the thoracic region.
My shoulders, wrists, hips, knees, sacrum, and multiple other joints are in advanced structural failure.
I am functionally non-ambulatory, losing neurologic access to my muscles, and declining rapidly.
I live with daily severe pain, frequent level 10 escalations, chronic migraine, systemic inflammation, malnutrition from extreme dietary restriction, neurogenic bowel and bladder dysfunction, and stabbing thoracic pain that interferes even with breathing, arm movement, and light touch.
MCAS causes anaphylaxis to smoke and chemical exposures, prevents me from taking essential medications (including antibiotics), and has kept me housebound and without specialty care for over a decade due to severe fragrance and chemical intolerance.
This is progressive structural and neurologic collapse in the setting of uncontrolled systemic inflammation.
