My life with Idiopathic Intracranial Hypertension
At only 18 years, in my matric year, I saw my dream of becoming a teacher slowly fading away - a dream I have had from a young age. Teenage life has never been an easy journey for me, especially considering there are not a lot of teen cases of IIH. If there is one thing IIH could not do to me, it was to steal my light - even on my darkest days!
It was 2017, in October, when my eyesight suddenly went blurry and I experienced the most terrible headaches. I thought it meant I needed stronger lenses for my glasses but sadly, that wasn’t the case. I went to see the optometrist who was shocked and very concerned, I had a lot of pressure on my optic nerves and she said that it might be from a brain tumour. She immediately booked me an appointment to go see an ophthalmologist the next day. My mom and I went home horrified and not knowing what would happen next.
The next day at the ophthalmologist, Dr Marx looked into my eyes and was also very concerned. She said I had Papilledema stage 2 which is a circumferential halo of oedema on the optic disc and needed an urgent MRI scan. The MRI scan then confirmed the diagnosis of Idiopathic Intracranial Hypertension. On December 14th 2017, I suddenly lost my sight in my left eye, I was devastated and didn’t know what to do. In early January 2018, the vision in my right eye worsened and I was booked for a lumbar puncture at Steve Biko Hospital, as I was not on a medical aid. The Neurologist then confirmed the diagnosis and said that the damage to my optic nerves in my left eye was permanent. By then, I also only had 30% vision left in my right eye and complete loss of peripheral vision. I needed VP shunt surgery urgently but, being at a government hospital and going through all their procedures and channels, it would take too long.
My mother (Bless her soul) found a private Neurosurgeon in April 2018 in Benoni that offered to assist us at a Netcare hospital, but we had to fundraise R35 000. While trying to get those funds together, I had to go for weekly lumbar punctures, sometimes twice a week. In June 2018 I got my first Lumbar peritoneal shunt, but there were complications. Exactly 4 weeks later, in July, I had to go back to theatre to move the LP shunt because the needle was pressing on the nerve that controlled my bladder. Unfortunately, my painful headaches and vision problems never got better. I eventually joined medical aid and started looking for a 2nd opinion which was a complete disaster and cost my parents thousands of rands. At this stage I had already had 12 lumbar punctures and I had another two from the 2nd opinion Neurologist. After the last LP shunt, I became so ill that I almost died, I landed up in another hospital with septicaemia. Thank God I survived that ordeal, because I didn’t think I was going to make it.
Searching for Answers
My mother never stopped searching for answers, she knew something else was going on, so she took me to a rheumatologist, and I was also diagnosed with Sjogren’s Disease - an autoimmune condition.