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My life with Idiopathic Intracranial Hypertension

Updated: Sep 22, 2022

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. So, my journey continued in 2019 with a wonderful miracle worker Dr D. Chula… my intracranial pressure unfortunately remained high and a decision was made to add a Ventricular peritoneal shunt in May 2019. Everything went well and the headaches were under control, until August 2019 when I had a setback, and my VP shunt tubing was blocked, which required another shunt revision surgery. He also diagnosed me with Chiari malformation II.

In January 2020, unfortunately Dr Chula no longer worked with my medical aid plan and I had to look for another Neurosurgeon that would be covered by my medical aid. We found another angel at Groen Kloof hospital, Dr Gunnell. He did a few more lumbar punctures on me, and then he realized that the old LP shunt was faulty and had to be replaced in May 2020.

In between all this trauma and pain, I lost myself as a person, I didn’t know who I was anymore… the Amy that I once was, was gone. I no longer had friends. In July 2020 I was admitted in Denmar psychiatric hospital for 16 days, where 2 very special ladies looked after me, Amorie Burns my psychologist and Dr C. Language. They literally saved me from killing myself.

In January 2021… A mass was found in my throat, called Lingual tonsil hypertrophy, it was pushing against my airway and an ENT couldn’t believe that I was still breathing. It was removed in March and the biopsy results was negative for cancer.

Slowly but surely my anxiety and depression flared up again, and by July last year I found myself back into a very deep black hole. I lost myself, and I lost my life worth living. I wanted to commit suicide. Thank God my mother saw all the signs and she phoned my psychologist immediately who then arranged for me to be admitted into Denmar again.

This is just a short version of what I’ve been through…

19 lumbar punctures

6 shunt operations

All I can say is… It’s been one HELL of a journey. But by the grace of God, I am still here and I’m fighting every day to survive this horrible disease that stole my youth and my life. My biggest support system is my family, especially my mommy, I just couldn’t do this without her love, patience and endurance.

Note from my mom

One of the most difficult things in life is to see your child suffer with a chronic condition and severe pain daily and feeling so powerless when you have to depend on Drs. Fighting this battle with your child, and trying to convince Drs that your child is really sick and they don’t believe you is not an easy fight. Amy is my warrior child she’s truly an inspiration to all of us.

Content & Image credit: Amy Botha

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