Hi I'm Jake. I live in Australia and I was a man that just lived life. I was going to join the army as an infantry sniper, then when I was 16 I became ill and my dreams just went.
This is based on what people have told me, as I don't remember due to MVA roll over, meningitis six times, three CSF leakage operations, and three cholesteatoma operations. So, I will try the best I can, I will start with listing my medical problems.
In 2009 I had a cholesteatoma removal, they had told me that I was lucky that I got there when I did. I had been seeing a ENT specialist since I was six months old and he never picked up on it - I asked why but they didn't have an answer. They removed it then a month or so later I ended up with meningitis, a sinus scrape and another cholesteatoma which was 2.5cm long.
I was in a car crash, then had another cholesteatoma which left the bone between my ear and my brain as thin as a piece of paper which gave me meningitis again. They couldn't find the CSF leak at this stage so they fixed the meningitis. Two weeks later I got meningitis again so they did more research and found that there was a minute hole that they could see on the CT scan. They did an operation using bone cement, when I came out of surgery, they clenched their teeth and told me they could see the hole on the scan but not in the theatre. So, they patched up where they thought it was and hoped for the best.
It was around one or so months later according to my diary and I had meningitis again. So, they fixed it with antibiotics and put me on the waiting list. They tried again by using a tissue graft from my leg, once again it failed and around 2-3 weeks later, I had meningitis. While I was on the waiting list, I got meningitis again for the sixth time so they sent me to Melbourne where they sealed the whole ear off. I have not had meningitis since, however my after effects include:
Back aches
Neck aches
Loose bone in my back
Another cholesteatoma in my right ear. I'm not having it removed though.
Memory loss
Balance troubles
Hospitalisation due to mental health problems and anti-anxiety medication
Really bad head aches
Hearing loss in my left ear
Recently I have been told I have heart problems
Leg problems
Nerve trouble - like little tad poles swimming in my legs and back
Loss of taste
Weight loss and gain
I can't learn anything. Everything I learnt at high school I have forgotten
Jumpy vision
I have now have been diagnosed with disc space narrowing and osteophytic lipping in the lumbar spine. I have had another 2 benign tumours removed one an enchondroma and a keratoma and I also have subtle T2 Weighted FLAIR hyperintense in the posterior limb of the internal capsule (aka White matter hyperintensities) I have an abnormal EEG the doctors are saying it is something I'm going to have to learn to live with. Due to this I am researching medical journals into ongoing treatments.
I am currently prescribed opioid medication for some of the pain and lack of appetite and sickness is a problem. My short- and long-term memory is getting worse, I forget what I'm talking about in conversations and people's names, I believe events have happened that didn't occur, and I am unable to plan dates, leading to me being worried about being on my own or travelling.
I will leave it there as I have too many pages in my diary. I try to sleep most of the day from pain and ongoing suffering. I hope my story helps someone else.
Jake Maloney
Aug 2023