Friday, 30 September 2011


Had my regular photos done of my eyes today. Papilidemia in my eyes are no worse than they have been, in fact they are probably better than previously. Visual fields test is reduced, with around 1/4-1/3 of the field missing from each eye.

I then saw a neurologist who said the following are possible:
*Hydro has reduced but not totally gone. It is not at a level that should be causing the problems so they are not sure.
*Infection could be the sole cause of my problems, and I might just be one of those people who react to meningitis with lower levels of infection in my CSF, as my white blood count is still high.
* A mix of Hydro and infection fighting each other.
* or, the best one. This could just be how I am left.
At this point I ended up in tears, telling him I couldn't live my life in the kind of pain I am in. I have been on a high dose of dexamethsone for a long time so my emotions are crazy, but I did look mental lol.

So options are repeated LPs, or an ICP bolt. He seemed to think they were going to do the ICP bolt but as he is my NL not my NS he said he was unsure. He is going to talk to the NS and advise they do the bolt. If that shows nothing I need to start on the muddle of working out good meds.

I see the Opthalmologist and Optometrists (eye doctors) again on Monday so I think I will get that appointment out of the way and then they will look at the bolt. I think, but then knowing this hospital I could wake up and be sent home tomorrow lol. I doubt I will see my NS till Monday now anyway!


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