Please Help Tanisha Through this Challenging Time

Hi everyone, my name is Tanisha, I’m an compassionate, friendly and reliable NYC 911 EMT. I served 13 years in the medical field and 2 years in the military but find myself facing my toughest battle yet.

On August 26, 2021 while having a routine eye exam I was told I had a condition called Papilledema in both eyes and that I needed to either see a specialist or go the hospital ASAP. A Papilledema is a condition in which increased pressure in or around the brain (intracranial pressure) causes swelling of the optic nerve inside the eye. With much convincing I overcame my fear and went to NYP Cornell where my journey continued. There they confirmed my diagnosis of my Papilledema in both eyes. After doing a Cat-scan and MRI it was highly suspected I had a rare disease called Idiopathic Intracranial Hypertension and I was admitted into the hospital neurology floor for further testing. The only way to confirm Idiopathic Intracranial Hypertension, IIH for short, is by performing a lumbar puncture and after 3 days in the hospital the diagnosis was finally confirmed.

The symptoms that I’ve unknowingly always experienced from this disease have always been severe headaches, tinnitus, constant nausea and vomiting in which previous doctors have attributed to other ailments. Shortly after my diagnosis of IIH was confirmed I started to experience weakness, problems with word finding, painful pins and needles in all limbs, severe headaches and sometimes the inability to walk or get out of bed. I was also having memory lapses, and episodes where it seemed liked I was just frozen or zoned out. Deja-vu, euphoria, moments of fear and feelings like being on a rollercoaster right before a seizure like episode was also happening. At this point I had/have to see a neuro- ophthalmologist every month so with planning to bring my symptoms up with him I also decided to make a additional appointment with a neurologist.

On 10/04 after my neuro- ophthalmologist, he decided my body wasn’t tolerating my medication well and since there was little to no change in my Papilledema’s in my eyes decided to switch me to a stronger medication with lesser known side effects. In another appointment with a Neurologist it was thought that I was having seizures so the doctor decided to order a short and long EEG test study. On 10/20 I went into NYP Columbia to do my short study EEG with my long study study scheduled for 11/08. My short study was reported back with no findings which was expected by the doctors.

On 10/24 while out with friends ended up being a night we never forget, my partner and friends witnessed me go into my first major seizure where I went unconscious, convulsing and blue for what have seemed to have been minutes to them. Once it was clear I was ok, we alerted my neurologist and a MRI was ordered. They were able to squeeze me in for one on 11/02 and with unfortunate results called in the very next day from my doctor. The MRI revealed that I have two more rare disorders. It showed I have Focal Cortical Dysplasia, FCD, which is a rare genetic malformation of neurons in the brain. It also showed I have Mesial Temporal Sclerosis which is scarring in the deep part of my temporal lobe of the brain that affects my hippocampus and amygdala. The hippocampus affects memory formation and retrieval, and the amygdala which affects my emotional processing. This confirmed the diagnosis of me having seizures especially euphoric like seizures.

The first line treatment plan for now is to put me on anti-convulsant medication in addition to my other medications to control the seizures as both disorders have the tendency to be drug resistant. In addition to that it seems I unfortunately have to frequently have lumbar punctures to drain fluid from my brain to relieve pressure my IIH causes. Unfortunately I can no longer safely work at this time which has cause a major financial strain onto my family. We’re currently struggling to get by on my partners workers compensation which gets swallowed into bills that were are finding hard to pay. We’re asking for help no matter how big or small to use towards bills. Most of all I would like to thank everyone for taking the time in reading my story. As my treatment progresses I will post updates to keep everyone informed.

Thank You!