I don’t remember much about that first week. I was on so many meds and in and out of consciousness.
A Dr told us if I hadn’t had treatment when I did I’d have died. A team from St Thomas's hospital came and put in a PICC line in my arm. All this time my ear was weeping a gungy substance. This was releasing pressure on the brain.
After 2 weeks and starting to feel half human again the weeping stopped and my face started swelling again. Drs put a camera in my ear to see if the perforation had closed up. If it had they would've had to make a new one. It was still there so I was sent for another MRI and this showed an abscess on my brain causing a blockage. I had a mastoidectomy to remove it. I was kept 31 days in total. The staff were fantastic. They couldn't do enough for me.
I had another MRI 2 weeks after surgery and was discharged with meds. I got the ferry home and still can’t fly as there is still some fluid on the brain that the brain itself will absorb over 12 months.
Seven months on I have 50% hearing loss in my right ear, my eye sight has deteriorated, the fatigue is indescribable and I have a hollow behind my ear where the surgery was. I have ear, head and face pain on the right side which is nerve pain or neuralgia which is a side effect from the surgery. It might go eventually. No one can tell. The right side of my head is still numb and my whole head tender but I'm alive. My last MRI recently showed some fluid still on the brain but no infection. I'm told full recovery could take 2 years.
I’m 48. Anyone can get meningitis.
Since I wrote my meningitis story in September 2019 the after effects have really set in. I was diagnosed with fibromyalgia by a rheumatologist who said it was a result of all the trauma on my body. I am gone demented with nerve pain, mostly right sided which is the side I had the brain surgery on.
I had osteoarthritis before I got sick but its much worse since. Its a scientific fact that meningitis can make any condition worse. I'm still coughing, have sinus issues and daily nose bleeds. I've developed sleep apnoea. I've lost 50% hearing in my right ear and my eyesight has detiorated. I've had surgery to correct my peripheral vision on my left eye and the right eye needs to be done too.
Recently for no apparent reason the same ear drum burst again. My gp put me on strong antibiotics but I had to go to caredoc at 1am the next morning for injections and the following morning my gp sent me to hospital. The infection had spread to the mastoid bone like last time but this time because it was caught in time it didn't go through the bone to cause a brain absess. It's now going to be investigated as to why it happened again and if there's an underlying reason then we'll deal with it.
People think when you're discharged from hospital you're better. Most people haven't a clue. 3.5 years later I've still got ongoing issues. I attend a pain specialist regularly. Meningitis has 100% ruined my health and my quality of life. Its not just affected me but my partner and family too. Its a living ongoing nightmare.