u/AdNatural4565

Age: 29 | Sex: Female | Height: 170cm | Weight: 84kg | Smoker

Please help me. I have spent a decade being told my pain is in my head, while the reality is that the pressure inside my head is destroying my physical health. I need a definitive diagnosis to stop the progression before my vision loss becomes permanent.

​The Diagnostic Picture:

Intracranial Pressure: Lumbar puncture confirmed an opening pressure of 23 cmH2O with significant clinical relief after 32mL therapeutic drainage.

Ojustcular Findings: Documented papilledema on OCT (RNFL 121/123 µm) with objective visual field defects (MD 3.5dB/3.1dB). My optic nerves are physically compressed. .

Endocrine Impact: A partial empty sella is present on MRI, correlating with low IGF-1 (77.6 ng/mL), indicating mechanical pituitary compression. .

Neurovascular Findings: MRI confirms a Type III AICA vascular loop, explaining my intractable vestibular symptoms (vertigo/tinnitus/nerve pain).

MY QUESTION:

PLEASE TELL ME IS THIS IDIOPATHIC INTERCRANIAL HYPERTENSION;;;

Based on this clinical synthesis—elevated CSF pressure with evidence of optic nerve and pituitary end-organ damage—is this a classic case of Idiopathic Intracranial Hypertension (IIH), or is there a secondary mechanism driven by my systemic inflammatory history (AS/Crohn’s)?

I am being passed around like a hot potato. My neurologist tells me my brain scan looks "fine," my ophthalmologist tells me my eye pressure isn't their problem, and my endocrinologist is baffled by the hormonal results. No one is looking at me as a whole person. They are looking at their own little slices of my body and saying, "This isn't my department."

My local institute has officially turned me away.

I’m exhausted. I’ve done the legwork, I have the data, and I want to stop the damage before it becomes permanent

Age: 29 | Sex: Female | Height: 170cm | Weight: 84kg | Smoker

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For a decade, I have been dismissed with diagnoses of "stress" or told my pain was psychosomatic—a narrative that my psychologist has been the only professional to challenge. I am currently reaching a point of functional collapse, and after seeking private diagnostic testing, I now have clear objective evidence of mechanical damage that is no longer "borderline."

Diagnostic Data

Intracranial Pressure (IIH): 3T MRI (Jan 2026) reveals bilateral optic nerve sheath enlargement (7mm), posterior globe flattening, and a partial empty sella. . Lumbar puncture (Feb 2026) confirmed an opening pressure of 23 cmH2O with "fast/quick" flow; 32mL was removed for therapeutic relief.

Optic Nerve/Vision: OCT confirms objective RNFL thickening (121/123 µm) consistent with bilateral papilledema. Visual field perimetry shows significant mean deviation defects (3.5dB/3.1dB), indicating progressive vision loss.

Endocrine Damage: Recent labs confirm the empty sella is causing functional hypopituitarism (IGF-1: 77.6 ng/mL; Ref: 119-288), proving that intracranial pressure is causing verifiable end-organ damage.

Neurovascular Compression: MRI confirms a Type III AICA vascular loop on the right, correlating with an unobtainable VEMPs response and severe vestibular paroxysmia.

The Problem:

I have been treated in "silos"—neurology focuses on normal brain parenchyma, ophthalmology on ocular hypertension, and endocrinology on isolated hormone markers. No one is synthesizing this data. My local neurology institute has declined to take the case, often citing the opening pressure (23 cmH2O) as "borderline."

Questions for the medical community:

Given the objective evidence of papilledema and visual field defects, how can I advocate for a formal Multidisciplinary Team (MDT) review to synthesize the neuro-ophthalmological and neuro-endocrine findings?

Is there a clinical pathway linking systemic inflammatory disease (AS/Crohn’s) to impaired CSF reabsorption in these complex cases?

What specific sub-specialty or tertiary center search terms should I use to find a provider capable of managing the intersection of neuro-ophthalmology, neuro-endocrinology, and neurovascular compression?

Please help me, cyprus medical care has been awful.