The story of Said
I am battling a rare and complex neurological condition: a “large left temporal arachnoid cyst” (97 x 55 mm) causing drug-resistant epilepsy and severe brain compression. Since 2012, my life has been defined by seizures that evolved from brief convulsions to prolonged episodes with falls, loss of consciousness, and post-ictal amnesia. Despite years of treatment with Tegretol and close monitoring, my epilepsy has worsened, even as the cyst slowly grew—from 84 mm in 2013 to 97 mm by 2018.
The cyst’s mass effect has deformed critical brain structures:
– 7 mm midline shift, compressing the left lateral ventricle and mesencephalon.
– Chronic pressure on the hippocampus, amygdala, and limbic system, likely fueling epileptogenesis.
– Subfalcine herniation and vascular displacement, risking irreversible neurological damage.
Advanced imaging and clinical reports confirm that mere “watchful waiting” is no longer viable. My case highlights the paradox of “radiological stability vs. clinical deterioration”, suggesting pathological neuroplasticity and ion channel dysfunction. Unfortunately, Algeria lacks the specialized infrastructure for complex neurosurgery or advanced epilepsy monitoring (stereo-EEG, MEG).
I urgently need:
1. Multidisciplinary evaluation by neurosurgeons, epileptologists, and neuropsychologists.
2. Access to innovative treatments ( endoscopic fenestration, neuromodulation, or targeted drug trials).
3. Guidance from global rare disease networks or research consortia studying arachnoid cysts.
By sharing my story, I hope to connect with experts, advocacy groups, or institutions willing to collaborate on a tailored therapeutic plan. Time is critical—the cyst’s relentless pressure threatens both my cognitive function and quality of life.