Recurrent meningitis

[SunflowerGirl]

Hi,

I'm looking to connect or share experiences with anyone who has had multiple cases of meningitis and is currently at risk of meningitis due to a csf leak?

My csf leak is from a traumatic injury and I've had 3 surgical attempts to fix the leak. I've had 2 cases of meningitis, and both were before the first surgery. The most recent surgery, which was a craniotomy, was just 1.5 years ago, and I suspect that there is still the occasional drop pf csf and therefore I'm at risk of meningitis... again.

My two ways forward are: 1. another craniotomy, (4th attempt to repair the leak), which comes with all its associated risks, which includes epilepsy and seizures. 2. Live with the increased risk of meningitis.

How do people in similar situations manage this? My second case of meningitis was much better than the first as I knew what was happening immediately and I could get to the hospital and treatment quickly. But can one keep going getting case after case of meningitis?

Thanks in advance if anyone is in the same or similar situation and can share thoughts, feelings, experiences and advice,

S

[Jonad724]

I was diagnosed with Mollaret's, or recurring non-aseptic viral meningitis in 2010. This was 8 years after my first near fatal attack of VM.

I was initially told I couldn’t have Mollaret’s as it was so rare but after 2 years even my GP had to agree that it was. I live with a lot of side effects of VM and Mollaret’s but I think it’s a case of working with the conditions. I worked out that high stress levels are the primary cause of the Mollaret’s attacks so I have coping strategies like breathing techniques and exercise.

I had 5 years away from active sport to let my brain settle down and see if the after effects did go away. They didn’t but I have just adjusted what normal means to me. Recurrent attacks were scary until worked out what was causing them and now it’s a case of managing rather than avoiding stress.

I hope this helps and if I can help further please DM me, I am a volunteer community ambassador for Meningitis Now with a special interest in VM and Mollaret’s support. Please feel free to get in touch.

[ncosto in reply to Jonad724]

I first had meningitis (after a bout of pericarditis) in 2001. It was after a period of extreme stress and recovery from the pericarditis. I was very run down. It was confirmed with a spinal tap in the ER. It was followed by shingles. It reoccurred about one year later, also followed by shingles. A neurological work up at the time diagnosed it as Mollaret's Meningitis. I was hospitalized the 2nd time. It occurred again approximately 18 months later, followed again by shingles. ( I knew what it was and drove myself to the hospital). Move forward 20 years and I was diagnosed with Chronic lymphocytic leukemia (CLL) with no symptoms. Then I developed some visual issues and then an MRI of the brain found inflamed meninges and then I developed the meningitis pain at the base of my skull. The doctors cannot determine if the inflammation in the meninges is from the cancer or a flare up of the Mollaret's meningitis. So although I have none of the standard symptoms of a progression of the CLL, I am now in a treatment plan with oral chemotherapy. A retake of the brain MRI (8 weeks after start of treatment) still shows inflamed meninges (without pain). All of the neurologists/oncologists have conferred and no one seems to know what to do about my inflamed brain.