dmat: Clearly your husband is a fighter and survivor. =) I'm glad to hear about his progress, even though he continues to struggle with a number of things. You said it seems as if his brain shuts down, and I experience something similar if I am getting or am exhausted. Literally, I have to think to walk. Weird, I know, but if I am super tired or have been physically taxed I have trouble navigating my body to walk up steps or more complicated movement. I have ongoing problems with forgetting words, but I think mine is mild. I also forget very often what I was going to do or say. That is frustrating, and it results in a "blank" feeling in my brain even though I KNOW I was going to do or say something it's gone. I know that is common for all of us from time to time, but for me know it is very often (numerous times daily).
My new doctor is optimistic that all of this will resolve once my meninges heal. He said that because my diagnosis was missed for so many days my recovery will be longer; also, he said I should not have been cleared for work for "at least" several weeks after being released from the hospital. He said that being they missed it for days my meninges are scarred. That doesn't sound good, but he sounded optimistic that I will recover; however, he does want me to follow through with the neurological assessment in June to support what he said. He considered doing a CT scan Friday but decided to let the Mayo Clinic do that and he said they'll probably do an MRI as well.
I have no plans to return to see the physician that I feel is giving me a hard time. I just don't want to deal with the frustration of him questioning why I still have headaches, back pain, exhaustion, etc., when it is part of my surviving meningitis. I see it like telling a chemo patient that it is unusual they feel nauseated and tired after treatment because of not being aware of the after effects. It is not ok. I believe he should have referred me out immediately following my hospitalization because meningitis is outside his area of competency.
Three weeks from today I go in for my neurological assessment. I have a lot of questions to ask. I'm a little scared they will do another spinal tap, but I'll live through it if they do. In all honesty the first one didn't hurt except when he missed and hit one of my vertebra. That about put me through the roof. When he did the spinal he said it might give me a headache, which made me literally laugh. How could the spinal tap headache be worse than a meningitis headache is what I thought.
Now that my headaches are not at a severe level anymore, a spinal tap headache would not likely be as easy.
dmat, is your husband able to read and so forth? Is his long-term memory affected?