Wednesday, 16 May 2012

Hospital again this summer!

Spoken to my neurosurgeon this week. I will be having an ICP bolt done around the 25th ish of July, which is 4 days before my one year zip day! Hoping it shows something that will help with my headache!

Saturday, 12 May 2012


Got word that I need to go in and see my surgeon on Monday. I am really hoping he is able to do something to help these blinding headaches. I am really sick of feeling like this!

Sunday, 6 May 2012

Infection? Hospital?

I have some strange things happening to my scar this weekend.
I went to the doctors on Thursday because this headache is crazy bad now and I cannot do anything to stop it. My complaints included being unable to lay
flat, vision being odd and my scar having big feelings of pressure inside it. He spoke to my neurosurgeon who was trying to sort me out going in for a lumbar puncture I think.
Now since that, starting on Friday, the very bottom of my scar, which is where I had a leak before and where I had to have an internal stitch removed a month out from surgery, has been sore. It is like a spot, but not a spot, kinda hard to explain. It looks l
ike a spot in the sense it is a raised lump, but it just doesn't look like a spot other than that. Also, if I touch it my fingers come off a little wet, and I stupidly squeezed it to see if it was infected and loads of fluid came out, but all of it was clear. Over today it has got more tender and now if I touch it, it hurts, but kinda deep in my head not on the surface, again hard to explain.
So now I am worried it is either an infection or I am developing a leak. I have been sicker than normal, feeling unwell from the minute I wake till I am asleep and beyond. I have been having less time between waking whilst asleep, the other night
it was literally 15/20 mins before I woke up, it is driving me crazy.
Unless something changes I am going to ride this out till Tuesday to see a doctor!

This is my scar today, over 9 months post surgery

Saturday, 5 May 2012


It is less than 1 month until the UK's only chiari awareness walk. This is being held in Southsea. This is the 3rd year and, so far, looks like it will be the biggest! Last year we had about 20 people with chiari, plus many more supporters and it is growing larger by the year.

This years walk is on Sunday 3rd June, which is Royal Jubilee weekend (4 day weekend!!!) and also half term holiday weekend. The theme of this years walk is Royalty, so kings and queens and knights and jesters wanted. Come along in fancy dress, and enjoy our picnic and children's entertainment! For more details email me on

Now there has been a fair few of us beavering away behind the scenes to make this a success like the previous ones have been, and the one thing we seem to be lacking is raffle prizes. If any UK people can help, can you please shoot an email to