30/9

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!

xxx

Thanks for reading!

I am hitting over 1000 views on my blog a month, crazy! I was unaware I was actually getting read by anyone other than a few until I found a button that tells me the stats lol.

Today is my 2 month zipperversary. What a 2 months this has been!! The following is a copy from my facebook status but I feel it covers it

"Exactly 2 months ago today I had brain surgery. 2 months later I am still in a hospital bed, I have added hydrocephalus and scoliosis to my diagnoses, fought meningitis twice, and beat it once so far, been told I am in a critical condition on two occasions, been pumped full of some of the strongest drugs, had more needles in my spine, scans, blood tests and procedures than I care to count and face more surgery and nights in here.
Reading it back like that doesn't make me sad. If I can do all that in only 2 months, then I can do anything!!!!""

I am going to get better and go and live the life I WANT to live, not the one than chiari and all other related bits have made me live for far too long!!

So update for 29th September. The ICP bolt has been written off as a no go! YAY!! Apparently because I have had so many complications, leaks and infections they are going to use LP results, which all show high pressure. I am waiting to see a neurologist, rather than a neurosurgeon, who will sort out some good painkillers. I then will go home on all my meningitis fighting drugs and then see about shunting me! WOOP! Maybe I will get my life back to some form of normality! What is normal when you have a dangle brain lol!

Funny Pupils

So I have been here a week. Still not had a ICP monitor cos of the shitty infection, I hate meningitis big style. The dexametasone makes me so emotional about everything and I cannot stop crying. Cannot wait to get off these!!!

So today I have had a 10/10 headache and then one of my pupils stopped reacting like it should. Fabulous =/

Finding this hospital stay hard. Tomorrow is 2 months since my operation. In the past 60 nights I have been here for 38 of them. I want my bed back.

finally awake.

I have been sleeping for about 20 hours per day since being back in. This is the most out of touch I have been with people in the whole time I have been ill. Sooooo, I got let out of hospital on 29th August after almost a month in with bacterial meningitis. Then managed 3 weeks and am now back in with chemical meningitis. Caused by my dura patch not getting on with my brain, lucky huh. I also have a stupidly high ICP! Was supposed to have a ICP bolt fitted on Thursday but I wasn't too keen so they put me on steroids. These have not helped at all, and they don't want to wait too long without shunting me due to the damaged I could end up with from it. So bolt tomorrow for me.
YAY!

Meningitis sucks!

Back in hospital. Last time I had bacterial meningitis and this time I have a tasty case of chemical meningitis! Lucky me!
Back on lots of drugs and just waiting to find out if any of them decide to help this horrific headache. Plan B is fitting an icp bolt, which I am not exactly keen on so that has been put on the back burner for now. Wonder if I will actually spend a month without an overnight stay in hospital as the past 3 months have both involved at least a few of nights each, 3 in July, 27 in august and now 3 in September so far =[

Location:Southampton General Hospital

Hearing

I am now the proud owner of a pair of hearing aids. I thought I would hate them, however I fell in love with them once I had got used tot hem.
I didn't realise what I couldn't hear. For example, the hearing office I had them fitted in was right by a busy reception area. I thought the room was made so it was soundproof for the hearing tests, as I couldn't hear the people outside. Turns out it was a normal room and once my hearing aids were in I could hear people moving about and asking questions and stuff. I could hear the lady who fitted my aids typing on her computer, I am now typing and can hear that as well. I hadn't noticed I could no longer hear it.
These things are so small you cannot see them once they are on really, especially as my hair is pretty long and messy at all times lol. This is the side view of them (obviously this is not me lol)


So yeah, I <3 hearing aids!!

8 week scar photo!

You cannot see it all as my hair is starting to get long. It is also growing straight out from my head. Has been getting rather annoying! Scar is still not as it should be for a normal person at 8 week with its sore patches still very visible. The top, which can't be seen, is still pretty gross and is just a massive scab, blerg! However, no leaks, no oozing so I am happy. Who cares what it looks like, it is my chiari badge of pride!!