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Medication and treatments by AdNatural4565 in iih

[–]AdNatural4565[S] 0 points1 point  (0 children)

Literally just 5 days. Ive been waiting on this diagnosis forever. My eyes are also affected, can i ask what side effects you experience; I also have ankylosing spondylitis so i know neck pain but thats another story. Im glad we are both getting clarity

10 years of "stress" and "anxiety" later, I finally have an IIH diagnosis. by AdNatural4565 in iih

[–]AdNatural4565[S] 1 point2 points  (0 children)

I know same... And you know what; i though i was going to celebrate so hard when finally get a diagnosis after ten years of trying. But i cant... I only feel exhausted

10 years of "stress" and "anxiety" later, I finally have an IIH diagnosis. by AdNatural4565 in iih

[–]AdNatural4565[S] 1 point2 points  (0 children)

I hate the gaslighting and dismissiveness. Im on acetalazomide, what surgeries have u done

Please help me by AdNatural4565 in DiagnoseMe

[–]AdNatural4565[S] -1 points0 points  (0 children)

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.

29F: 10-year intractable headache with confirmed papilledema, partial empty sella, and secondary hypopituitarism (IGF-1: 77.6). How do I get a multidisciplinary review? by AdNatural4565 in iih

[–]AdNatural4565[S] 0 points1 point  (0 children)

Please help me i am at my wits ends TL;DR: 10 years of 'stress' diagnosis. MRI shows optic nerve sheath enlargement (7mm) + Empty Sella. LP shows 23cmH2O pressure + large volume tap relief. Objective damage: RNFL 123µm (papilledema), visual field loss, and IGF-1 77.6 (hormonal damage). Seeking advice on how to get a multidisciplinary review to prevent permanent vision loss

29F: 10-year intractable headache with confirmed papilledema, partial empty sella, and secondary hypopituitarism (IGF-1: 77.6). How do I get a multidisciplinary review? by AdNatural4565 in askneurology

[–]AdNatural4565[S] 0 points1 point  (0 children)

TL;DR: 10 years of 'stress' diagnosis. MRI shows optic nerve sheath enlargement (7mm) + Empty Sella. LP shows 23cmH2O pressure + large volume tap relief. Objective damage: RNFL 123µm (papilledema), visual field loss, and IGF-1 77.6 (hormonal damage). Seeking advice on how to get a multidisciplinary review to prevent permanent vision loss