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/

I was literally fighting for my life...

I felt I should do an update regarding my meningitis. I have spoken at length in the past about chiari and wanting to spread the word. Now I have had meningitis, I felt I should talk more about that.
Normally, people recovering from surgery who get meningitis suffer from the viral form of it. I was unlucky, because I managed to get bacterial meningitis. I spoke at length to my doctor about this, after having a mini break down in the last few days of my hospital stay. He was kind enough to talk me through everything and I took notes so I knew what was going on. I was scared and confused about what was happening. I have not written about this much as it scared me so much, and I know people who have chiari read this. I also know that close family and friends read and I didn't want to upset them. It was horrid for me and I feel that it would have been scary for others so I kept it hidden, even from my closest. I am sorry for that!
It is shouldn't be a worry for other chiari people waiting for surgery. I was VERY unlucky to get the bacterial form of the condition.
So basically I had pneumococcal meningitis. According to the Meningitis UK site it is the second most common type of meningitis in the UK. It is also the deadliest form.
When I arrived at hospital with a few vague symptoms of meningitis they didn't think I had an infection to the extent I had. My neck was stiff but it had only been 6 days since my surgery, so this couldn't count that. I had a slight aversion to bright lights, but not as bad as it can be, I wanted to keep my eyes shut at all times but it, at that point was not too bad. I had a headache, but again that was not uncommon considering what my brain had been through. This type of meningitis doesn't produce a rash so that is another thing that doesn't help.
When I got up to the ward after my MRI, about 2 hours after being admitted, things changed. I couldn't keep my eyes open, I was so tired and didn't know what was going on. I had moments of being totally lucid and moments of thinking I was being held in hospital against my own will. I hated bright lights, or any lights. The nice nurse made me a makeshift eye mask and turned off every light. She even stuck a bandage around the bedside TV which for some reason do not turn off. I was vomiting and was very ill. I do not remember too much about this, but the same nurse was looking after me on another evening and told me about it. I do remember becoming lucid and having no idea why my television was wrapped in a bandage. Kind of an odd moment lol.
So my doctor came round to tell me the results of my blood work (infection markers up), took one look at me and got his lumbar puncture kit out, at 6.30am. He also started me on dexamethasone, a steroid. I was not with it too much then, but did perk up a while later.
So LP results showed I had over 8 times the amount of white blood cells needed to be diagnosed with meningitis. You need to have at least 300 to be diagnosed and I had 2600!! It also grew something in some test they do to see what you have wrong with you. The doctor did explain about this, however I have no idea what I have written when I was making notes. Apparently I decided to write in a totally different language. It makes no sense!
So yeah, had 2 weeks of IV Cefotaxime, 4 weeks of oral Rifimicin and 4 weeks of dexamethasone.
I didn't know how unwell I was the first week or so. My doctors didn't tell me as they didn't want to scare me. When I was feeling better I was stupid and looked up the medicine they had put me on online. I found some scary information and this is what caused my massive panic/mini breakdown and prompted the conversation with my doctors. Now this is hard for me to think about and hard for me to type. My doctors had classified my infection. They have a list of like 5/6 levels of infection, based on the expected survival rate. Due to the amount of infection I had, and they way it was very slow at responding to the antibiotics and steroids they had classified my condition as life threatening. This means I had about a 50/50 chance of not surviving, and an even higher rate of being left with severe disability. I was downgraded after a week to severe infection. I was then upgraded to life threatening again after my infection levels doubled. I was then downgraded and eventually made my way right down the infection level chart. Hearing all this from my doctor made me feel good. This might sound dilly, but he told me after I was classed as severe so I was getting better. It made me feel good because I knew that I was fighting and winning. Literally battling for my life and I didn't know, but I still managed it. Made me feel stronger and more able to carry on.
I am lucky as I have been left with only a few residual effect from the meningitis. I have very bad tinnitus which is a nightmare. I did have this before my operation, but not badly, I hardly noticed it. It went after the operation. It then came back when my infection was at its worst. I now have to sleep with headphones in and music playing. I tried using earplugs, but they make it worse. I have to have something playing to distract myself. I also have slight hearing loss. Apparently, my doctor told me, something like 20% of people who survive have hearing loss. I will need to see a hearing specialist, but it seems I have problems with high pitched noises and very low tones. I can hear to talk and have no problems at all with that. However I can't hear bass type sound or squeaks. I have had a hearing test and it just shows that. It may cause me problems in later life. I will know more when I see the hearing doctors. More hospital appointments. Oh YAY =/

Where do I live?

So after 25 days, the hospital finally stopped my IV antibiotics and let me go home!!! I had pretty much forgotten where I live, what it was like to not be attached to wires, drips, BP machines, pulse things. It is nice to not have 30 mins of IV at 9am, 1pm, 5pm, 9pm, 1am and 5am. To not have blood tests everyday, to not have my blood sugar taken twice a day because I was on such a high dose of steroids, to not have my BP taken and to generally not be on my own all day until visiting time.
I was so excited to be at home. It was great. I had chinese takeaway and caught up on some TV. Didn't sleep very well because the bed was too flat. Woke up and felt oky till 11am. My vision went squiffy, and I noticed my incision had swollen up. Decided to try and ride it out. It was, after all, a Saturday and a bank holiday weekend.
Got to 1pm and I was vomiting, even with my anti-sickness tablets inside me. Also my incision felt damp, which it had the previous evening, but this was a fair amount more. At this point I really, really did not want to go back to the ward. I decided to phone NHS direct and ask for advice. They told me I needed an ambulance. I didn't want that so they referred me to the out of hours GP service. Got a call back about 5 mins later and the GP also said she wanted me to get an ambulance. She also said she would phone my ward and ask advice. 20mins later she phoned to say they wanted me to go to a local hospital to see a Dr there who would decide if I needed to be readmitted.
I was hoping that this doctor would just say my incision was infected and that was the dampness I could feel. But nope, it was a clear fluid and could pretty much only be a CSF leak (I knew this all along, but was convincing myself otherwise) He phoned the ward and after a while waiting for a bed I was admitted. I had left bed 15 just 24 hours previously, and was admitted to bed 16.
So I spent 2 nights in again. My wound was leaking a fair amount on the first night. It was not only CSF leaking, but also blood. I woke up and my pillow looked like I had stabbed it =D
Seemed to stop leaking and they observed me for a day and did some scans. The scans show that my ventricles are still considerably enlarged so I am still on the way to having a shunt fitted. They gave me the option of going home on Monday or staying today. I was out before lunch on Monday!!
I am on Rifampicin 600mg twice a day until September 10th. I do not like this antibiotic. Kinda gross so don't read the next line if you don't wanna barf. Basically this drug has turned my urine, stools, tears and sweat bright orange. Not nice. Also I have to take it in the morning, which is when my head is at the worst. I get really bad sickness and the antibiotics have turned my vomit bright orange and they burn my mouth so bad. Gross I know but hey, this is my blog so I am going to type this =D
So, yeah, see my NS about 9th ish of September, my infection markers need to be normal for him to consider surgery, as he doesn't want to spread my nasty meningitis around my system. He gave me the option of either having a shunt fitted right away, or having an ICP monitor fitted first. I think I am going to take the ICP route. I think it is much less invasive and it may show I do not need a shunt. My NS did say it was unlikely that the ICP would show normal pressure after mine was so high but he did say it would help him sort out settings for the shunt so if I wanted to take that route I could.
I am still getting tired easily. I walked to the postbox today. This is literally across the road and can be walked in less then 5 min there and back. By the time I got home I was apparently very pale and needed to go to bed. Had a 20 min nap and now feel a little better. Sat in the garden in Jacobs little play house and read some books with him and just chilled. Still tired and sore and could sleep for a week but just need to pace myself.
So, that is all. I will be sure to update when I can. I have decided I bloody hate chiari, hydrocephalus, scoliosis and meningitis. However, being in hospital I saw people who will never get better, never have a quality of life. I saw families broken due to a person injury. Life is harsh, but I now know that it is also short and can change at any time. I am going to get better and then grab every second I can!!!