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 realised 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