Surgery is done!

So I had my operation on 29th July. It all went oky. I had some problems whilst under GA, and my blood pressure bottomed out about 4am the next day. My herniation was much larger than they thought, my surgeon actually apologised for not doing the operation sooner. If only the MRI was accurate!
So I was oky, surgery Friday and was home by Monday. Was having problems with headaches and on the Tuesday I was at my GP due to pain. I was literally constantly sweating because of the pain. It was seriously yuck! Wednesday I was doing oky ish. Thursday I was unable to keep my eyes open, was feeling sick and hot and cold. Went to my GP and saw a stupid locum. She told me "what do you expect, you have just had brain surgery?!" I told her I knew something was wrong. She told me if I was worried to go to A&E but it would be a waste of time. I ignored her and went to A&E.
Got to A&E and they actually bothered tot take my vitals. My temperature was 38.9 and my pulse was 147. If the GP had bothered to do this she would have known I was not right. Got taken to majors and had a really great doctor. Neuro came down and I was sent for an urgent MRI. Also had a lumbar puncture. They found out I had raised intacrainal pressure and also a build up of fluid on my wound site. Also had a fairly large amount of blood in my CSF which is abnormal.
They then found out that my white cell count in my CSF was high. You are supposed to have between 0 and 5 white blood cells in your CSF. I had a massive 2600. So started on IV antibiotics, which I am still on now as the meningitis is still winning. I am also on oral antibiotics. My last white blood cell count was 375, it did get down to 250, but the infection fought back.
I also had lots more lumbar punctures. Normal ICP is 7-15, with anything over 20 considered high. Mine was 59 in one LP. So they decided to fit a lumbar drain, as the high pressure was causing my wound to re-open and leak. The lumbar drain is a needle placed between 2 vertebra in your lower back. They stitch this in and attach it to a bag, which collects the excess spinal fluid.
A normal person with slightly raised pressure drains about 5mls every 4-6 hours. I was draining between 10 and 35mls per hour. I had the drain in for a week, and they were hoping when they took it out my brain would stop making so much fluid and sort itself out. Within about 6 hours of the drain going I was, again, in a world of pain. It is the hardest feeling to describe, but try and imagine feeling your heartbeat in your head all day long. Wn you feel your heartbeat, you get a rush of fluid which you can kinda feel and it is painful. It is almost like someone has stuck a bicycle pump in my ear and is forcing air into my head. So that was Thursday. They have been watching me over the weekend to see if I improve. I have not improved, I have got a fair amount worse. I can no longer lie down flat as it makes my head worse. However, I can not sleep upright as it hurts my still very tender neck. So I have been catching only a few hours kip each day. The antibiotics are given all round the clock, every 4 hours and so I am woken up every night at 1am and 5am. The antibiotics take 30 mins to run though and then they have to disconnect and flush my IV. This means I am awake for the whole time. Every night. I normally sleep from about 3am till 5am, then maybe another hour and then I am woken up for meds and obs ect. I feel like a walking talking zombie lol.
Anyway, I digressed. As I am not improving they are going to scan me again with a view to fitting and LP or VP shunt. More surgery, BOO! I have another week of IV antibiotics so by the time that is all done I will have been stuck in here for a month!
Even with the meningitis and Hydrocephalus I am still super glad I had the operation. My chiari head has gone, I can move my right hand properly and my eyesight has improved, both the squint and vision, in only 2 weeks.
I hate being in hospital but I view it as everyday I am in here, I am one day closer to going home and living the rest of my life as a proud chiarian, brain surgery and meningitis fighter and winner.

5/7/10

29th July. That should be my decompression date. I got notice of this yesterday afternoon in a phone call from the hospital and am just waiting for the letter in the post, which I should get tomorrow.
Pre-op is 18th July at 10.30.
Gotta be in between 7.30 and 8 on 29th and I want to be home in a week, but have been told I will be in for about 2 weeks!

My operation will be one day between 18th July and 29th July. May be the first 1 or 2 days of August but that is not likely apparently.
I should hear next week or early the week after with a 100% date.
All I want to do is be well enough to go on the Chiari walk in September. Really looking forward to it now, loved it last year. I found it really helpful!
It is 18th September at Southsea sea front Portsmouth if any UK chiarians not on facebook read this. This year we are supporting The Ann Conroy trust, last year we were not official!

All about me!

A collection of photos of me and the people I talk about in my blog! I ramble on and on about people so thought they could dhow there faces =D



This is me! Not a great photo but it'll do =D



Me and my wonderful Boyfriend Richard. We have been together for 5 years and he is amazing!



Me and Clairey! She is awesome!



Me, My bestie Hannah and The wonderful Keith Lemon...Bang Tidy!





My Mummy. I am a total Mummies girl and I love her sooooooo much She is the bestest person in the world!



My brother Michael. He is almost 21. We are all a really close family. Michael lives the other side of the New forest but we still see him once a week or so.



This is Karen AKA Carrot AKA pee wee. She is my little sister. She is almost 18. She is great even if we did fight when sharing a room. To be honest though, now I would love to have her back fighting with me =D




My other little Brother. He is almost 15 (I think)


So that is me. Everything you need to know! The above people are my world tbh

My MRI scan!

June 13th

No new yet of course. I am still waiting for a date.
In other news it was my birthday last Tuesday so have had a busy week. Had a BBQ, made my birthday cake and went to the pub on Monday night with a big group of us and had a few drinks and my normally rubbish balance was made a billion times worse =S
Tuesday my brother Michael (who is 20, not my little, little brother Jacob) took me shopping and we generally just chilled in Southampton.
Wednesday I went out for dinner with Richard, Michael and his girlfriend Nikita. We went to an all you can eat Chinese, twas yummy!
Thursday I went to see Ivanah and her family. Ivanah has chiari as well and lives about 5 miles away from me. I love chilling out with her and her family are great as well!
Friday I took a well earned day off and chilled!
Saturday I went cosmic bowling with my besties Hannah and Claire and our boyfriends.
Sunday I baked a cake for my Mums Godsons 12th birthday and went for a BBQ (inside as it was chucking it down)

It is now Monday and I am feeling ROUGH as I have been on the go for so long. Chilling today, Doctors tomorrow and seeing Ivanah on Wednesday!

I shall update again and hopefully have some good news (I swear I say that in every updates lol)

News.......what news?!

So no updates for a while but nothing much has happened to be totally honest.
I have been told I am 3rd on my Neurosurgeons list, and that they are sorting out the dates for my operation this week or next week, so should hear fairly soon.
My headache is still there and not really changed and is still triggered by pretty much anything.
I have been struggling with more and more neck pain and relying on a neck brace to keep my head feeling vaguely normal. It is almost as if my head gets lifted into a "normal" position with the neck brace on and then when I take it off my silly head slips down my neck. Haha I am odd!

It is my birthday in a weeks time....I will be old! Having a few friends round for what will probably be a typical English BBQ, I.E raining. Then going to the pub to get WASTED, which for me means a few drinks so I don't get a crazy interaction with meds. So everyone else can get wasted. Oh the joys of Chiari lol.

My next update will be my operation date! (It probably won't be but it is good to be optimistic lol)