Monday, 12 December 2011


It is 1.49am and tomorrow/today I am meeting my new neurosurgeon. I will be travelling to London early in the morning to meet with him. I am very nervous but also excited and positive.
I am sorry updates have been bad, I have not had much to say!
Will write again tomorrow or Wednesday

Saturday, 26 November 2011

Ink in my skin

Getting a new Tattoo the week after next! Excited as I am going with my brother so he can get his first. He will probs faint. I am getting lyrics (I know, I need to stop covering my body in quotes) This song means a heck of a lot to me. It helped me get through chiari, meningitis and 2 months in hospital. I listened to this on repeat anytime I wanted to sleep or switch off from the busy hospital. This is my marking to chiari, not the awareness ribbon, but rather a quote that sums up not only my journey but many many other people who are fighting this terrible, incurable condition!
"you gotta swim for the music that saves you when you're not so sure you'll survive" This song did just this for me. When I was in pain and crying, when I was so tired from medication being given every 2 hours round the clock, when I was in my dark place, when I was in a dexamethasone rage. This song was the soundtrack to all of that!

Getting away

So, I am taking a nice break to Dublin. I leave tomorrow and am going for 5 nights. I am looking forward to it. It will be nice to have some breathing space!

In other news, I have been doing physio now for a little while. My physio is trying to get my range of motion in my neck sorted, and wants me to be seen about dizziness and balance. She also wants me to try hydrotherapy.
I have my neurosurgeon appointment on 13th December. SCARED!!

Monday, 21 November 2011


I became acutely aware today that I have been neglecting my blog recently. I have to admit this is not the only thing I have been neglecting. I have been copping out on life recently. I have been feeling pretty down in the dumps that my surgery hasn't worked, but also, maybe stupidly, I feel embarrassed. I was so sure I would be fine after surgery, totally sure I would be "ME" again! This, alas, has not even been close to the case. I am in worse pain and cannot even be bothered to get out of my bed most days, days when I do manage to get out of bed that is such an effort that also getting dressed is almost out of the question unless totally required. People are honestly getting sick of me, sick of me being sick, sick of me not living my life in pace with them and sick of me being in pain and moaning!

So, rant over, I am seeing a new private neurosurgeon on 13th December so hoping he will help me out!!!!!

Post op MRI scan!

Monday, 17 October 2011


So, I have been dicked around by the hospital one too many times. They cancelled my surgery!!! And to make matters worse, they then just sent me home. The neurologist felt I didn't need the surgery, even though my pressure was 35, this is not too high. He started me on topirimate. This didn't work, as I suffered an allergic reaction when I tried to take 50mg. I developed a rash all over my body. So back to square one. I have requested that I no longer be treated at my local hospital. They seem to not really care, the emotions they put me through, constantly changing their mind. I just feel that I would be better off being treated at another hospital. I also put a complaint in about the way I was treated, not by the nurses but by the doctors. I am going to see a NS privately up in London to ask his advice and see what he thinks. Just got to wait for the hospital to send me a copy of my medical records and MRI/CT scans on disk and then I can book an appointment. When I was in touch with his secretary last week she said I could be seen as early as 27th October, I will not make that appointment due to the wait for my medical records but it does show how quickly I could be seen, amazing what chucking a bit of cash can do!!
I seem to be complaining a lot recently. I also put a complaint in about a locum GP I saw. I saw her back on August 5th, 6 days after my surgery. I attended the appointment suffering from a headache, vomiting, photophobia, sore neck and was feeling feverish. She told me to go home and rest. She said, What did I expect, I had just had brain surgery?! I explained that I had been feeling not too bad, but had suddenly gone downhill. She told me I could go to A&E, but it would be a waste of time and I would be waiting for 6 hours. She did not take any observations ect. I ignored her. Upon arriving at A&E I was in majors within 10mins, and in an MRI scanner within 2 much for waiting 6 hours. I was then in hospital for a month with meningitis. Today I received an email stating that the doctor had written a response to my complaint and I should receive it later this week!! Kinda nervous about what she will say.
SO yeah, had a crap week, which is why I have not updated. I will update again when I get a letter back.

Tuesday, 11 October 2011

Surgery tomorrow!

Having surgery tomorrow to fit a shunt. My headache has got increasingly worse since the lumbar puncture so they are fitting a shunt in the morning. Not sure of the time or anything, surgeon will see me later. Gunna be a breeze =D

Wednesday, 5 October 2011

I am not full of infection.

Today I was told that my CSF shows no signs of meningitis. This is the first time in 2 months that I have had no obvious signs of infection. They did say that there is still some inflammation, and this means that I am still on a high dose of steroids, but should start weaning off them in the near future. This is such good news, as the dexamethasone is known in this hospital as "the meanies and the munchies" They have turned me into a greedy strop head.

Other news. Head was amazing till 1am last night. Then it got worse. By 10am it was horrid and by about 7pm I was vomiting. Pressure is high =[

Tuesday, 4 October 2011

ANother Lumbar puncture and another surgery!

This morning I had a lumbar puncture. They decided to do this rather than the ICP bolt due to my still low immune system. A little hole in the back is nothing compared to a hole through the skull! Pressure showed up at 35, it should be no higher than 20. They drained me down to 11 and I feel great now =D
I have just seen my neurosurgical registrar who informed me that 35 is too high and I shall need to be shunted. He has gone to speak to my consultant and they are going to get back to me, when I don't know but it should be later on today. Brain surgery again, more hair gone. Oh this is fun =D

Sunday, 2 October 2011

ICP Bolt information (google)

Intracranial pressure monitoring
Intracranial pressure monitoring uses a device, placed inside the head, which senses the pressure inside the skull and sends its measurements to a recording device.

How the Test is Performed
There are three ways to monitor pressure in the skull (intracranial pressure).


The intraventricular catheter is thought to be the most accurate method.

To insert an intraventricular catheter, a burr hole is drilled through the skull. The catheter is inserted through the brain into the lateral ventricle. This area usually contains liquid (cerebrospinal fluid or CSF) that protects the brain and spinal cord.

The intracranial pressure (ICP) can be monitored this way. The ICP also can be lowered by draining cerebral spinal fluid (CSF) out through the catheter.

The catheter may be hard to get into place when the intracranial pressure is high.


This method is used if the patient needs to be monitored right away. A subdural screw or bolt is a hollow screw that is inserted through a hole drilled in the skull. It is placed through the membrane that protects the brain and spinal cord (dura mater). This allows the sensor to record from inside the subdural space.


If an epidural sensor is used, it is inserted between the skull and dural tissue. The epidural sensor is placed through a burr hole drilled in the skull. This procedure is less invasive than other methods, but it cannot remove excess CSF.

Lidocaine or another local anesthetic will be injected at the site where the cut will be made. You will most likely get a sedative to help you relax.

First the area is shaved and cleansed with antiseptic.
After the area is dry, a surgical cut is made. The skin is pulled back until the skull is seen.
A drill is then used to cut through the bone.
How to Prepare for the Test
If you need this procedure done, you will be in the hospital and most likely in an intensive care unit. If you are conscious, your health care provider will explain the procedure and the risks, and (as with any surgery) you will have to sign a consent form.

How the Test Will Feel
If the procedure is done while you are under general anesthesia, you will feel nothing until you wake from the anesthesia. At that time you will feel the normal side effects of anesthesia, plus the discomfort of the cut made in your skull.

If the procedure is done under local anesthesia, you will feel a prick on your scalp like a bee sting as the local anesthetic is injected. You may feel a tugging sensation as the skin is cut and pulled back. You will hear a drill sound as it cuts through the skull. The amount of time this takes will depend on the type of drill that is used. You will also feel a tugging as the surgeon sutures the skin back together after the procedure.

Your health care provider may prescribe mild pain medications for relief. You will not get strong pain medications, so that your doctor can check for signs of brain function.

Why the Test is Performed
This test is usually done to measure intracranial pressure. It is usually done when there is a severe head injury or brain/nervous system disease. It also may be done after surgery to remove a tumor or fix damage to a blood vessel if the surgeon is worried about brain swelling.

High intracranial pressure can be treated by draining CSF through the catheter. It can also be treated by changing the ventilator settings for people who are on a respirator, or by giving certain medicines through a vein (intravenously).

Normal Results
Normally, the ICP ranges from 1 to 20 mm Hg.

Note: mm Hg = millimeters of mercury

Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.

What Abnormal Results Mean
High intracranial pressure means that both nervous system and blood vessel tissues are under pressure. If not treated, this can lead to permanent damage. In some cases, it can be life threatening.

Brain herniation or injury from the increased pressure
Damage to the brain tissue
Inability to find the ventricle and place catheter
Risks of general anesthesia
Alternative Names
ICP monitoring; CSF pressure monitoring, ICP bolt

Quick weekend update!

So today I had a few hours release from hospital. I was allowed 2 hours out in the afternoon and went to TGI Fridays and had a nice grilled chicken for lunch.
The ward has been so hot, hitting 29* outside, and we are in a glass room. The lady opposite me is so rude, she even shouted at Jacob this afternoon.
Tomorrow I have 2 eye appointments. One with my squint doctor and one with my eye doctor. Then as far as I know it is bolt time. ARGGG! Was so happy to have got out of having that! I'll update tomorrow.
Last comment, people are starting to comment on my posts and I cannot reply, as I am on 3G internet.

Friday, 30 September 2011


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!


Thursday, 29 September 2011

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!

Wednesday, 28 September 2011

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.

Sunday, 25 September 2011

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.

Friday, 23 September 2011

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

Tuesday, 20 September 2011


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!!

Monday, 19 September 2011

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!!


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!

Thursday, 15 September 2011

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

Tuesday, 13 September 2011

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!

Friday, 9 September 2011


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.

Tuesday, 6 September 2011


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?!

Sunday, 4 September 2011

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!!!

Friday, 2 September 2011

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.

Thursday, 1 September 2011

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

Tuesday, 30 August 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!!!

Monday, 22 August 2011

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.

Tuesday, 5 July 2011


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!

Friday, 17 June 2011

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!

Monday, 13 June 2011

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)

Wednesday, 1 June 2011

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)

Friday, 13 May 2011

My short term memory is shot.....

That is my excuse for not updating this!
In all honesty I haven't really got too much to say. My operation that was cancelled back in February has not been re-scheduled. I met my new neurosurgeon at the end of Feb, and I really liked him. He made no hesitations about me needing the surgery and that I have a reduced space at the back of my head.
Been feeling generally much better about things, I am not worrying so much about things I can not change. I can not force my NS to operate (though my brother kindly offered to "have words")
I have enjoyed the bank holidays in the past few months. Spent lots of time in the sun with the lovely Claire and Hannah. Had family time now my uncle is back from his tour in Afghanistan.
Life is good!

Friday, 11 February 2011

The waiting game!

So, many of you will know by now that my surgery that was scheduled for 2 days ago, was cancelled!
I'm feeling pretty down about it at the moment, waiting such a long time now!

Tuesday, 1 February 2011

This time next week....

So it is Wednesday 2nd February, which makes it a week until my decompression surgery.
I am slowly starting to feel more nerves creeping over me. I have got my Pre-op appointment tomorrow and my B12 injection. The lack of B12 has made my sleeping so much better, been asleep before 1am every night. It does, however, make my muscles ache even just walking up the stairs.

I went out to TGI Fridays for dinner this evening, with Richard, my cousin Becky and her Boyfriend Craig. Was LUSH! However, I drunk a glass of coke at about 9pm, which means that I can not sleep this evening.

Getting close =O

Friday, 28 January 2011

Another week closer

So it has been just under a week since my last update, which means I am closer to the operation.
Started the count down properly yesterday, had a lunch with family. It was myself, Richard, my Mum, Jacob and Jane (honorary family member) We went to an all you can eat Chinese Restaurant in ocean village. Such nice food, we spent ages there. Jane basically got drunk (at lunch time) and ate chillies and raw garlic! I loved it.

Jacob (who is my 17 month old baby brother, for people who don't know me well) hurt his leg today, the hospital think he dislocated his hip. He is really drugged up on painkillers, so oky at the moment, but he has been walking funny.

Tomorrow we are off to B&Q to pick paint as we are decorating Jacob's first bedroom and Ikea on Sunday to get his furniture. Should be a nice project to keep my mind off what is happening.

12 days =/

Sunday, 23 January 2011

A proper update about the upcoming operation!

Tonight I packed my bag for the first night in hospital. I have been told I can only take a small bag in that first night, as it needs to fit in my locker whilst I am having surgery. I had no idea what I should pack and faffed around for a long time =D
I finally settled on batman Pyjamas, wash stuff and my portable DVD player and DVDs to watch during the night as I very much doubt sleep will be coming easy. I have Shank and Where the wild things are. Both for the budget section of Tesco, so no doubt they will not be great!

I have then packed another bag which contains all the things I might need during my stay after the operation is over with. Button up Pyjama tops and polo shirts with big wide necks, making it easy for me to fit my massive head in, without catching my incision. When I was last in hospital I didn't know I was going to be staying in so had not got anything ready. This meant that when asking Richard to "bring me in some t-shirts I wear regularly" he heard "Bring in tops you have never seen before, and that I have hardly worn" He brought in tops that I would have worn a while ago, before I put on a million stone due to medication (and me being a fatty.....but shhhhh, don't tell anyone about that)So I have decided that careful planning is going to be the only thing preventing his (male) brain from not registering what I am saying.

Got to tidy my room this week, it needs to be "spotless" according to my Mum, to prevent infection once I get home. I am perfectly happy with the way it is at the moment, however the look she gave me when I told her that if "she wanted it tidy she should do it", means that I will, of course, be spending everyday until my operation dusting =D

So, my other plans before the operation are slightly more exciting than cleaning. This Thursday (27th) I am going out for lunch with Mum, Jacob, Richard and Jane. We are going to an AMAZING all you can eat Chinese restaurant. It does the most amazing food ever. My stupid brain has made my apatite quite poor, however the food at this place mean that this will be one battle of wills I will win against my brain.
Then I am having a girls night on 4th. Should be good! I love spending time with my girls, just chilling. I also really appreciate the fact that they haven't forgotten me. It would have been so easy for the invites to dry up, as I am unable to go out on the town at the weekends, or even just go to the pub and have a few bevvies. however, I still see my small, but amazing, group of mates all the time. They don't seem to care that rather than falling over drunk, I fall over invisible obstacles and need to walk with a stick. They don't make me feel like an old biddy, or get embarrassed as I wonder round with a stick. I really can not thank them enough for being the kind of people I know I will want in my life for ever! They are not getting rid of me that easily.
Then I am seeing my mate Tayla in London. Going to hang out for the day. Really looking forward to it, big time! Tayla is one of my (small) group of close Chiari Friends. I have lots of people who I have met due to Chiari, but only a few have been real supports to me. They all support me in different ways. Tayla supports me by letting me moan for AGES, taking the piss out of me and slagging of Cher Lloyd =D

And that is pretty much it. I have my B12 injection and my Pre-op appointment on Thursday 3rd Feb. That'll be a fun day, spending it sat in doctors/hospital waiting rooms.

I am still convinced my operation will get cancelled, until I am in the aesthetic room I will not believe it. I have another Chiarian having the same operation, on the same day. She is having hers at King's in London. Janey has had hers cancelled already, so hers will defiantly be going ahead, even if it is the next day. The fact someone else is having the it done as well as me, makes me feel better. We have swapped mobile numbers so will be keeping each other updated on progress.

So that is it for this update. I will post again after my pre-op and let you all know what is going on!

Saturday, 22 January 2011

I am being decompressed

9th February is D day. Finally, decompression time. I am so happy. I will be sure to keep this updated with the events! xxx

Monday, 3 January 2011

Hospital again!

So I'm back in hospital! I love it =[
I went to a GP appointment on 21st December, just for a check up before Christmas. I mentioned that I was having vision problems and the next thing I know I'm in hospital. Started fitting at about 3am on 22nd and didn't stop for hours. In total I had 60 fits in 24 hours.
Was in HDU for 2 days due to repeated fits. This was not fun, I was out of it on medication for most of it but I can remember little snippets.
I then caught a hospital infection that was spreading around the whole hospital. 9 wards closed and I was in isolation for the whole of Christmas! I went into the little room on Thursday morning and came out on boxing day. So I didn't have Christmas, I wasn't eating so didn't have much Christmas dinner, just a yorkshire pudding.
Moved to a cancer ward on the sunday and literally just chilled out until Wednesday when I moved to a neuro ward. Spent new years here, at midnight I was being examined by a doctor and by 2am I was having an emergency brain scan. Happy new year =]
it is now 3rd January, and I'm still on neuro and being observed. No fits since 29th December. It is bank holiday so no idea when I'll get seen. I'll update when I know anything.

Location:Southampton general