Please help me get my brain back.My brain function is impeded by a lack of cerebrospinal fluid(CSF).It feels like my brain is hijacked and I cannot function normally, because the symptoms are aggravated as soon as I get out of bed.
I passed out in the mall on 27 September, getting up from a bench after just sitting there for almost an hour. It made me realize how intense my symptoms have become.
I have a condition known as intracranial hypotension/CSF leak/spinal leak.I suffer from debilitating head pain, brain fog, visual and hearing disturbances, because of the CSF leak causing there to be too little fluid around the brain. There is no productive life for me. I tried to do a real estate internship in April, but I had to quit after 4 days because I reached a stage where I couldn’t recognize the boss and her son at a training event.
I am being treated at a public hospital where the neurologists and neurosurgeons don’t have experience with this condition, because it is rare and often misdiagnosed. I have had several visits to the emergency ward of the hospital where they only give me pain medication.I was referred to the psychiatry department on my first visit, and I had to file a complaint with the customer care office of the hospital.Eventually, I had a 20-year old lumbar-peritoneal shunt removed in July this year as a first step to eliminate possible cause.The neurosurgeons are not trained in the revision/removal or lumbar shunts, and I had complications with the wound developing subcutaneous fluid retention 3 weeks post-op, likely to be due to a larger CSF leak which they created during surgery.They also made me get out of bed within 24 hours post-op, which is not consistent with standard procedure for surgical procedures disturbing the membrane around the brain.
The neurosurgeon responded with wanting to place a ventricular shunt to drain cerebrospinal fluid from the brain – which was totally unjustified because they haven’t performed any procedures to confirm raised intracranial pressure. I signed myself out of the hospital.
I have reached a point of total frustration with the public health system and I would like to approach the doctor who placed my shunt in 1998, but he is now at a private hospital.I don’t have medical aid.I returned from South Korea in February, where I was forced to leave my job because of my medical condition, which interfered with my teaching duties.
I am currently tutoring maths and other academic subjects to primary school students part-time, as a desperate meana to earn some income. I have to mask my symptoms all the time, particularly the brain fog and visual disturbance, by following a student centered approach. I don’t know how long I will be able to do it, especially since my symptoms are worse after the recent surgery. There is also no tutoring income during school holidays.
I have sold most of my belongings to cover living expenses already – mostly things I have accumulated during my stay in Korea.I have reached end of the line and I don’t think I will be able to avoid being homeless for much longer.
There is no way for me to raise the money for private medical treatment. Intracranial hypotension is a rare neurological condition which requires monitoring by a panel of medical specialists including a neurologist, neurosurgeon and neuro-opthalmologist.Also, rectifying the problem is likely to require surgeries, blood patch and continuous monitoring with MRI, CT scans and lumbar punctures.The accumulated cost will be very high and it isn’t possible to accurately calculate it.
Therefore, I am extending a plea to you to assist me in finding a solution for my medical puzzle. The money will be used for medical procedures and to cover accommodation, transport to and from hospital and other basic living expenses while I am in recovery.
I appreciate your donation, share and prayer to help me on my journey of solving my medical crisis.
For donations in South Africa, please use the dedicated account: Brain Fund, Capitec Bank, Account Number: 1663789418