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!!

UK CHIARI AND SYRINGOMYELIA AWARENESS WALK!

Sunday 18th September, the second annual chiari awareness walk!
It was a great success and I, for one, enjoyed it massively. Huge thanks have to go out to Katie Blay for working hard all year to put on this fantastic event, despite having 5 children, 3 of which have chiari. Her youngest son was only decompressed about 2 weeks ago!
The walk was in aid of the British Syringomyelia and Chiari Socioty. The Ann Conroy Trust



Day started with a cup of tea in bed from Tayla. She has chiari and was over from Portugal staying for the weekend to attend the walk. That is dedication. Got ready in my new Chiari T-shirt and had a few photos looking fresh =D



By 11am we were all getting restless and left early to head down to Southsea.
Met up with some others and started blowing up balloons. These were donated for the second year running by Signature Balloons!




Then slowly everyone started arriving and the atmosphere got more and more buzzing! Some people had never met another chiarian. Others had developed close friendships through having chiari. One good thing I guess



So at 1pm we set off for the walk (or roll in some of our cases, myself included)

















Arrived at the other pier around 2pm. Was looking deceptively nice!



We had face painting, a lucky dip for the kids, with medals for them completing the walk, a raffle, cake and some snacks. We left off the balloons as well as some chinese lanterns. By this point it had started raining so the chinese lanterns turned into a bit of a competition between some people as they were proving almost impossible to get going! We managed about 3 floating out of about 20!



We took some obligatory photos of all the chiarians who attended (minus Vaughn who picked the wrong moment to take a walk outside)



The day ended with the drawing of the raffle (I won a box of chocolates which were enjoyed whilst watching X-factor that evening lol)

It was a fantastic day. I know I am feeling very tired and sore from it, however I am buzzing from being with my second "family" that on Sunday I felt none of it. I loved it and knowing that there are others who just "get" me is amazing. I have met some amazing people on my chiari journey and I really will never forget the things people have done to make this journey easier. See you all next year, Sunday june 3rd for the next walk. I love you all!

Got a busy weekend ahead of me!

I have not updated in a while. I am sorry.
I have had a tough little while. My head has felt like it is being crushed in a vice, so sore. I have had a few chiari symptoms come back, which is worrying me slightly. The worst being that when I stand up I get that rush. A dizziness and head rush that scares the life out of me. Not because I am not used to it, oh, I really am. It has been plaguing me for years. However, I have been free and happy to be free of it for almost 8 weeks! The suddenly, BAM, I stood up, maybe a little quicker than normal. Now every time I stand it hits. It is like a fullness in my head, I would not be able to describe it to anyone who doesn't feel it. I stand up, my head pounds, I can feel it in my head, I can hear it in my ears. My vision goes black and I am literally walking along blind =/
I have no idea if this is chiari or the pressure. I had it prior to surgery but who know what my pressure was then.

Chiari Awareness month and this means Chiari UK Awareness Walk! I am so excited to see all my old and new friends!

In other news, I am officially addicted to Dexter. Been watching hours of it. Since I got sick I have watched every episode of Bad Girls, House and now Dexter =D

6 week photo!

6 weeks old. A bit late posting this! Got a wound infection which caused 2 NS visits in 4 days, they hope will clear up with antibiotics!

HEAL PLEASE YOU STUPID INCISION!

My incision started to have 3 lumps swelling up on about Tuesday evening. They were not painful but swelled up, split open and leaked lots of crap. Pus and other gunk. Wasn't painful so I left it, as I was still on antibiotics for my meningitis. Kept swelling , leaking and then flattening and then swelling again. By Thursday evening my neck was starting to hurt, so I booked an appointment at my GP surgery at the minor illness clinic, as they had an appointment for 15 mins after I called. This clinic is nurse lead. Went in, saw her and she wasn't 100% happy but went off to get a prescription for more antibiotics signed by the duty doctor. Duty doctor hear my background and came to see me. She really wasn't too happy with my incision, I had no idea if it looked bad, it being on the back of my head makes it hard to see if it is infected =D She drew around the incision to mark the infected area, gave me ANOTHER week long dose of antibiotics and made me an appointment for first thing, 8.40, the next morning at 8.40 with a doctor at the practice.
Got home at about 5ish, chilling out and trying to sort a lift to the doctors early the next day. At 6pm I get a call from the GP I had just seen. She said that after reflecting on how my incision looked she had phoned the on call NS at the hospital. He decided I needed to be seen the next morning at 11am.
So went today and they wanted to readmit me there and then. He didn't like my wound and the fact it had been leaking.
I told him....NO WAY! It is my little brother, Jacob's, birthday party tomorrow. It was supposed to be back in August but because I was in hospital they postponed it. He went off to speak to the big boss, who agreed that I could go home on 2 more antibiotics (that is 4 types I am on right now) I have to go back in at 11am on Monday morning with an overnight bag just incase the incision has not got better.
They are concerned that my symptoms could be meningitis again! They think this time it would be chemical meningitis, which is a different type. They also think they might need open the top layer of the skin to drain out all the gunk that has built up and also pull out the top layer of stitches that are supposed to dissolve and haven't.

Pardon?!

I had my hearing appointment today. Turn out I am struggling to hear higher pitched sounds. None of my hearing is within normal range. Hearing aids have been ordered and I will be lucky enough to be the proud owner of a pair in 2 weeks time. Does chiari/meningitis want to steal anything else from me?!

Off out

I do not even know if I will be up to this without spending tomorrow in bed. However I am off to the cinema to see The Inbetweeners movie this evening. Can not wait!!!

http://www.youtube.com/watch?v=Mfjo83Hfp78&feature=related

My chiari surgery pictures.

I have yet to add any photographs of my scar or anything else from my surgery. So here goes!! If you are a wimp and do not like photos of incisions then do not read this. They are not graphic, but my friend Dave will not even look at my scar so others may hate it as well!



This was the morning after my surgery. Lots of hair gone. This is what upset me the most after the op.



4 days after surgery! I was at home at this point.



5 days after surgery. Later this day my incision turned nasty and it was one of the first signs of a problem. I was readmitted to hospital less than 24 hours later.



7 days after surgery. This is the morning after I was readmitted. The blue pen line around my incision is marking the area of infection



9 days after surgery. My stitches are gone, but my incision had started to reopen by this point.



Lumbar puncture needle. 9cm long!!



My lumbar drain. A plastic tube is placed between 2 vertebra in the lower spine. This is left in and drains spinal fluid into a bag. The yellow square you can see is a port. This is used to collect spinal fluid and meant I did not need anymore lumbar punctures. My drain was in for a week.



This is my CSF, the fluid which surrounds your brain and spine. This is what is being removed by the drain. This should be crystal clear, but mine is yellow due to my horrid meningitis.



13 days! I had still not washed my hair by this point, gross! Wound has re-opened by this point, which is why it looks so wide! Also infected right at the top of the incision



17 days! Wound has re-closed and the infection at the top is starting to clear



24 days. Internal stitches are pushing out at the very bottom and just above which is what the holes are!



26 days and my first day at home! Internal stitches at top and bottom have been removed. Have about 5 more which are starting to break through the skin and will need pulling out!

Surprised there is not brains all over the walls....

I have been suffering with pressure in my head the past few days, I have had it everyday since the drain was removed. However, the past few days have been far worse. It literally feels like my brain could explode.
My scar is much harder than it has been, which is how it has been when I have had high pressure. I have also had pain in my eyes and ears. Both eyes are so sore that I cannot stop rubbing them. This has made them all red and nasty looking. However, it does make them feel better for the few second that I am rubbing them. Really do not need to make that into a habit as it is not good for my eyes.
I have been forced to take my max dose of painkillers including my oromorph which I like to save until it is too much, as I am not the biggest fan of it. Tonight is the second day in a row I have had to take it.

I should see my NS soonish, but have not heard anything as yet. I will start hassling his secretary on Tuesday if I have not heard. My antibiotics for the meningitis finish next Saturday, so I should be safe for surgery any day after that. I want this done and dusted as soon as possible so do not want to have to wait from an appointment with Mr V.

My fundraising for the UK awareness walk has gone well after my radio interview yesterday. I have now raised £75 without the gift aid included.

Radio Interview.

I am taking part in a series of radio interviews to talk about Chiari and talk about the UK awareness walk. My first interview was today. This is going out on BBC Radio Solent, which has about 250K listeners, so spreading awareness. I will be interviewed regularly over the next few months.
This is the link, which will be active for about a week. My interview is about 10mins in
http://www.bbc.co.uk/iplayer/episode/p00js14p/Julian_Clegg_01_09_2011/