I'm new on here. 5 years on

Hi I had viral meningitis in 2011 3 wks after major brain surgery. I was in hospital for 2 was having various tests, antibiotics & antiviral via drip before viral meningitis was confirmed after 3 lumber punctures. this 'mild' form of meningitis has left me with aquire brain damage, affecting my walking, speech, balance, other cognitive things & vision. I am losing my vision slowly, although it now seems to be speeding up. I lost who I once was, that outgoing, hardworking, fun person & have been left with a shadow, although I am getting used to this 'new' me now, as are my hubby, kids & thankfully my granddkiddies don't know any different.

I know this awful illness affects each one of us differently, and I am no worse off that you, but I wanted you to know where I'm coming from.

I wondered if anyone else out there is losing or has lost their vision because of meningitis and if so, would u share your experience with me, your journey and how you have and do cope?

Thanks for reading.

9 Replies

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  • Hi. You say that you contracted VM after major brain surgery. However, I am wondering if in fact it was the brain surgery that has left you with your problems rather than the VM? If your vision is a new problem that wasn't occurring straight after the vm I would suggest you go to an opticians and get it checked out. If necessary they would refer on to a hospital opthalmologist. As you have a brain injury you may find the Headway forum on HealthUnlocked helpful to you as much of what you describe is what many people with a brain injury experience regardless of how it has been caused eg infection, injury, haemorrhage, tumour etc.

  • Hiya, thanku for reply. I was fine after the brain op, so defo wasn't that. But all the consultants I am under, both in neuro sciences & opthalmology agree that I most probably contracted VM three weeks later (I was more susceptible to meningitis because of the CFS fluid leak I suffered).

    All experts believe that it was the VM that has caused ALL of my problems.

    The optic nerve collapse started with the vm. I suffered with other sight problems during & immediately after vm. My vision problems have been accelerating recently but have been there since vm.

    I have been a patient/client of headways who also believed the same. The vm has left me with a brain injury.

    I actually recovered really well from brain op & was home in a week, feeling generally quite well, even with CFS fluid leak.

    Meningitis now have also accepted that problems are from mv.

    Mv is an awful illness, but I am grateful that I am here & have my family around me.

    I hope that you have recovered as you look very very poorly in your picture.

  • Was the VM confirmed by LP? The full extent of any brain damage caused by the surgery would not necessarily be immediately apparent. The brain damage you have spoken of is more likely as a result of Bacterial Meningitis but if you had that it wouldn't resolve without hospitalisation and antibiotics?

  • My mv was confirmed after 3 LPs as viral meningitis. I was immediately started on iv antibiotics and antivirals when admitted to A&E and kept on both until diagnosis was confirmed. The antibiotics were stopped but I was continued on iv antivirals for sometime. (I was hospitalised for around 2 weeks)

    My brain injury was confirmed by a brain injury specialist consultant as being from vm and not the surgery.

    My opthalmologist consultant has said that my eyesight problems fit more with meningitis than the brain surgery that I had.

    All of the many specialists that we have spoken with, have after running various tests etc have agreed that the difficulties that I face are as a result of severe viral meningitis.

    What about you? What's your story?

  • Gosh that is incredible that the hospital specialists can categorically say that the major brain surgery hasn't caused any of your problems. Your brain would have still been recovering from the surgery at the point when you got the VM so I am puzzled as to how they would know at that stage what eg cognitive problems the brain surgery would have caused? As the cognitive difficulties especially if they are not the clearly obvious ones apparent at the time are not often realized until further along in recovery. I would have thought that the VM would have contributed to your brain injury but not been the primary factor unless you had encephalitis or something affecting the actual brain rather than the meninges?? It is unusual for VM to have such a major outcome as you have experienced with bi, walking probs, eye probs, speech probs etc, but clearly I am wrong for understanding that. Yes there are people on here that have ongoing effects from VM but yours I thought were more the result of having BM. You shouldn't minimize what the impact has been on you and your life and assume others situations are worse. What has happened to you has changed you and your life and that is significant. Do you mind me asking what the brain surgery was that you had to undergo?

  • Thanku for ur continued interest in my problems. Can I ask, before going on with debate about bs & vm where u are coming from? Ie medical background, meningitis now, or othe? Would make explaining about surgery & reason why easier. 😄

  • I had BM & S, cerebritis, cerebral abscesses and strokes etc. If you click on my name it will take you to my profile where you can read what happened to me. As a consequence I have an acquired brain injury. I'm also on the Headway forum and the after effects you described are very common after brain surgery. There are quite a lot of people on the Headway forum who have sustained a brain injury post surgery undergone to treat a variety of problems. Yes I did previously work in NHS as a nurse in various specialties which maybe explains my slightly greater knowledge and curiosity about the varying degrees of post problems that VM might have caused you rather than it being a consequence of major brain surgery. Apologies if I have over stepped the mark of helpfulness.

    Meningitis Now monitor the posts on this forum but only sometimes respond to say they have sent a private message and the MN person would have their MN connection to the organisation identified. Mostly it is people like you and I who have had meningitis ourselves or those related to e.g. Parent of a child, partner, or people who are caring for someone.

  • You haven't overstepped the mark, it's just that there is little use me explaining everything if someone has no idea what I'm talking about, lol. Wow! U have really been thru it haven't u!

    I'm just in middle of sgrocery hopping online so will get back to u in a bit later. Takes me a while to shop online so may not be Tim later on. 😃

  • Hello. My son was just discharged from the hospital after being treated for Viral Meningitis. we're from the south east coast. He contracted Valley Fever (cocci fungus) while trying to make a life in California after meeting new friends there at the school he attended there. The valley fever spores traveled to his brain and caused the meningitis. His vision is blurred and he has to turn his head side ways to focus on something clearly. Theyve given him different eye exercises to do to strengthen his eye muscles so that he won't have to turn his head to focus. He can walk but his balance his is off. His speech was very very slow while on the hospital but has now gotten back to mormal preety much. He can do everything on his own , take showers, eat, go to the rest room... Etc. Once I get him in to see his primary Dr. We'll be trying to get him referred to a Neurologist to see if there was any permanent damage or if this blurred vision will be a permanent disability. I hope not since he's only 23. My dond says he thinks it's actually getting better, but I really want the Dr to evaluate him and his progress. I wish uou a fast and complete recovery!! My prayers for you! :-)

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