Thursday, 28 April 2016

No more surgery was the best and worst news

I recently announced to my family and friends that I will not be needing any more surgery at this point and it was so uplifting to know how much people cared. To any of those people reading this I want to take this as an opportunity to say thank you, from the bottom of my heart. After the huge amounts of positive messages I felt wonderful, however the truth is, that feeling didn't last for long. 

When sitting in my consultants room staring at my before and after MRI I welled up with happy tears as he told me the operation had been a huge success. My brain is less squashed into my spine and my syrinx's (cysts in cervical cord of my spine) had shrunk a considerable amount. I wanted to jump up and down, run down the corridor and scream at the top of my lungs 'YES', but all in that moment something changed. The sudden realisation that I could not jump up and down or run or scream at the top of my lungs hit me worse than anything ever before. I turned from the happiest i'd felt to the most terrified and once again, my world came crashing down. 

The truth is, this condition is forever and it has never really hit me like it did on that day. All of the times before I have been looking forward to the next step. First it was diagnosis, then it was testing, then surgery, then drug prescriptions - but what now? I am free to get on with my life but how does one do so when everything has changed and you are not you anymore? Every part of me has been jumbled up and now I need to piece it back together and when I do, I will have to adapt to a different me. A 24 year old me who now shakes when she holds things, who constantly has pins and needles in her hands and legs, who has sudden moments of dizziness and gets glared at like she's drunk at 10am, who doesn't know if tomorrows plans will be cancelled because she can't get out of bed. 

These are just a few of the realities I now have to accept and get on with. I do feel very lucky knowing that I will not be dependant on a wheel chair, I am able to walk, have a glass of wine or the bottle if I want! I can dance, sing (still have the voice of Mariah) and do most of things I always wanted to do. It's just accepting that these things are going to be far more difficult now I no longer have health on my side. 

So, to all of you out there who may be going through the same transition... you are not alone and you are most certainly aloud to feel mega shit about it for a while. However, always remember how lucky you are to still have your life a head of you and be proud of how much you have achieved, becoming a stronger person each time! 


Monday, 25 April 2016

A letter to a healthier me

It's hard to emphasise how tough it is to live with a neurological condition or chronic illness. It's impossible to articulate the impact it can have on your emotions at times. As much as you try to live your life despite of the restrictions and obstacles, there will always be a part of you that longs for your old life. The life you enjoyed before being struck down. The life where you were completely free. Free to work as hard as you possibly could without pain. Free to be spontaneous. Free to live how you pleased. Free to be you. 

This is my letter to a healthier me 

Don't take a day for granted. 
Run free and be outside as much as possible! You have no idea how much you miss running when you can no longer run. 
Avoid having too many 'duvet days' as one day all you will want to do is get out of bed. 
Remember to always look after yourself. Your health is absolutely your priority at all times. 
Say yes to every adventure and no to work overtime. You will never be lying in your hospital bed thinking 'I'm really glad I had all those designer shoes' but I promise you, those memories you made will fill you with joy and content. 
Be spontaneous. 
Be fearless.
Have no regrets. None. Nada. 
Savour the moments where you are truly happy doing what you love with the people you love. Those memories might one day be what you need to get you through the darkest of days when you are alone with only the beeping of the machine you are attached to for company.
Make memories.
Take lots of photos.
Film lots of videos.
Don't give a shit about what people think of you. As long as you are kind to others you have no reason to waste your energy and time worrying about anyone who has negative opinions of you.
Get drunk but never complain about having a hangover. Real suffering warrants complaining. One day you'll wish a terrible hangover is all you had.
Never beat yourself up for 'failing' anything. 
Always trust your decisions. 
Sing at the top of your lungs. Dance. Laugh until your stomach hurts/you piss yourself.
You have a good life right now. You're luckier than you realise - remember that, but most of all remember to look after yourself. 
Health is wealth and someday soon your body will make you poor. Until then, run free, walk tall, and enjoy every second of complete freedom.

Monday, 27 July 2015

Georgia's Hospital Essentials

I see many people on public forums and social media asking about what to pack for their hospital stay when having surgery for Chiari Malformation and so I thought I would make a little post about some items which help ensure that my hospital experiences are a little less... rubbish! It would be wonderful if anyone wants to add other items you find useful, just pop them in the comments. There are a few more little bits and bobs that I have added below the 'top 7'. I believe that the key to packing your hospital bag is to make sure everything you take will make you feel comfortable and a little more as though you are at home. 

1. Water based face cleanser and extra large cotton wool pads. 
These were my saviour for keeping my face clean and refreshed before and after my decompression surgery! When you are quite literally attached to your bed because of an ICP monitor or a CSF drain, the last thing you will be doing is getting up to wash your face. For the first few days after surgery I was unable to lift my head from my pillow and with all the drugs being pumped into me combined with the hospital air con, it's hardly a surprise my skin seriously suffered. Luckily I treated myself to a bottle of 'Ren 3-in-1 Cleansing Water', it is perfect for sensitive skin, unbelievably refreshing and smells divine. Luckily I had my mum by my bedside everyday and she kindly cleansed my face for me meaning that by the time I could move myself I felt clean and a little more refreshed. I'd also like to add that this is a really great product to invest in for everyday, not just for hospital stays. Chiari, along with other chronic illnesses can make you feel extremely tired and it sometimes hits us the hardest in the mornings, so this is great for those days you just really can't be bothered to do the whole wash, cleanse, tone and moisturise routine (also great for mid week hangovers!). 

2. Neck Cushion 
I got the idea of taking a neck cushion to hospital with me from my sister who said it was a saviour for her, particularly on the journey home from hospital and in any car journeys thereafter. I found that the neck cushion was impossible to use for my neck when I was in hospital, which I know sounds strange as it's in my top 7 essentials but it was a huge help for another reason. After the decompression surgery I was quite surprised to see that I had a very unpleasant looking tube coming out of my head which left me feeling really uncomfortable lying on my back or on my left side at all; this is where the trusty neck pillow came to my rescue! I used the pillow to prop in between my knees and because it was much firmer and thicker than the hospital pillows, it relieved a huge amount of pressure on my spine, arms and legs - making an all around far more comfortable experience. Not to mention the car journey home was made ten times more bearable. 

3. A good lip balm
Being indoors for a fairly long period of time with constant air conditioning fan over your bed whilst consuming a large amount of drugs, it is inevitable that everything is going to shrivel up like a prune! This is why a lip balm is a definite essential. 

4. Technology 
It really isn't the end of the world if you don't own a tablet but if you do and you know you're going to be in hospital for longer than a week, seriously consider taking it with you. I had a CSF leak and therefore had to go in four days before my operation and this could get pretty damn boring. Even with a television, there is only so much day time TV a person can take before feeling like you're loosing your mind! Download some good brain training aps - brain training is really good especially for Chiari sufferers - memory problems springs to mind! I also found that starting a new box set was quite a treat as this was the first time in a long while that I had the time to sit around and get into a new series. 

5. A grown up colouring in book 
Yep, honestly, they are amazing! Even if you feel like it's the last thing on earth you would ever consider buying, once you get into it, they are such a naturally relaxing past time and again just like the downloading a box set, this is probably the only time you can really unwind and release your inner child!

6. Non slip spongey slippers
These could go without mentioning as most hospitals request that you bring these anyway but I had to put them in here because they are an absolute essential. Whatever your reason for being in hospital, you are going to need these and the comfier the better! I got mine (pictured) from John Lewis - they were only £10 and super comfy and durable. I've worn them almost everyday for two months and they still look brand new. 

7. Button up pyjamas 
Absolute must have when going in for brain surgery and for you a long time after, maybe even forever! If like me, you are in for more than 3 days post op you will really benefit from these little garments of joy! Lifting anything over your head for the first couple of weeks is pretty much impossible so I would highly recommend getting yourself a nice pair of button up cotton pj's. I got mine (pictured) from Topshop and got a couple of similar pairs but with shorts as I was in for two weeks and there was a heatwave - joyful! 

Some other little items that I have found really helpful when staying in hospital...

A toothbrush holder 
A tongue cleaner - these strange looking objects are absolutely brilliant, if a bit gross, for mouth hygiene especially when you can't brush your teeth properly and are spending quite some time vomiting, which is inevitable after decompression surgery. 
A 'Tangle Teaser' - Unless you are lucky enough to have short hair, after surgery you will find that the thought of brushing your hair will make you cringe and possibly feel a bit sick. My hair become very matted at the back as I was unable to touch the back of my head at all for around two weeks. The tangle teaser is like the hair messiah! It brushes through knots without pulling at all and works so quickly - a great item for everyday life with CM (especially the bad head and neck days). 
Comfy pants - Don't think I need to say any more about them other than the last thing you want is a constant wedgie!  
Peppermint Oil - Rub a little bit of this magic stuff on the painful areas around your temple to help alleviate the pain and feel fresh and relaxed. Again, this is really good for everyday use, not just the hospital.  

I really hope this helps those of you out there who are wondering what to pack. Don't be too worried about entertainment, i'd focus more on the items that make you feel comfy, relaxed and as much as possible as though you are at home. x

Tuesday, 26 May 2015

Hattie's Arnold Chiari Malformation diagnosis story

Hey everyone, I'm Harriet, the little sister. I was diagnosed with Arnold Chiari Malformation in 2010 and have already undergone the brain surgery my sister is yet to have. I have been so busy recently so haven't been able to post anything yet, although I think my beautiful big sis has done an amazing job so far! This is my first post all about the build up to being diagnosed with the brain condition.

I was a normal 13 year old girl, I loved school and my teenage life was just beginning. I didn't really have a care in the world (apart from trying to steal all of Georgia's make-up and clothes). Everything was changing at this time in my life; I was really starting to grow up. In 2010 I started to get horrific headaches and begun to notice that my balance was getting really bad… ‘Oh it's just hormones!’, I always said to myself. But then weirder things started to happen to me and I asked myself: ‘why can't I swallow properly without choking?, why do I have disabling headaches countless times a day?, why am I throwing up every morning?, why can't I walk without nearly falling over?, why have I started to mumble, nobody understands what I'm saying?!, why can I never remember anything?...what is happening to me…?’. 

I knew it wasn't just hormones.

I decided to now tell my family that something wasn't right with me. My mum and I went to the doctors and as soon as I told the doctor I was sick after breakfast every morning, she asked me what I ate for breakfast, I replied with porridge...thinking, why the hell is she asking me that?!. ‘You are probably lactose intolerant, cut out dairy for a month and see how you get on’. Oh great, that explains the sickness! But what about all my other problems? I knew I wasn't okay and that there must be something else causing all of these problems. So, I cut out dairy for a month and of course it did not stop me being sick and my other symptoms were just getting worse, I was not lactose intolerant. I returned to the doctors once again and I had baffled them - they had no idea what was happening to me and referred me to Watford General Hospital where I saw a paediatrician who checked all my reflexes. I will never forget the worry I saw in her face as she was checking me. She sent me off to have an MRI scan of my brain, neck and spine. Even now, I wasn't really thinking anything of it all, I was worrying more about boys and what was going to happen on Hollyoaks that week, if only I knew what was coming!
That same week, we got the results of my MRI back (normally they take weeks to get back to people), with the quickness in which they got back to us, we knew something wasn’t right. ‘We have found something wrong with Harriet's brain, however we are not trained to tell you what is wrong. You have an appointment at Great Ormond Street Hospital in London this week, where you will be told’. YOU CAN'T TELL US?! Torture is the only word to describe the next two days building up to my appointment at GOSH.
The day came. Georgia, mum, dad and I all got the train to Great Ormond Street, I have always loved London, so I was excited to be going there and wasn’t really thinking about why I was going!
We were all in the waiting room, when my name was called. Georgia wasn't allowed in, just mum, dad and myself. The neurosurgeon was so lovely and just started off doing a few reflex tests on me, and then he sat us all down taking us through my MRI scan and showing us where the problem was. ‘Harriet is in urgent need of decompression surgery. Decompression surgery involves removing a chunk of the skull, to relieve the pressure off her brain. This pressure is causing the tail of your brain to fall down and crush your spinal cord - and is causing all of these problems. If Harriet does not have this surgery, she will slowly deteriorate and eventually be unable to walk, talk, or feed herself.’

The only way I can describe how I felt at this moment was like in films, when the character has taken drugs and their vision goes blurry and it sounds like they’re under water. I couldn't hear a word the neurosurgeon was saying after that. How was this happening? This can't be real, I thought to myself, this stuff is only in films and Holby City! I had never even had a tooth out and they wanted to take some of my skull out?! All I remember after we came out of the room is my sister running over and I collapsed into her arms, crying like I have never cried before and probably never will again. This was real and was happening to me.

It was August 2010 when I was diagnosed with Arnold Chiari Malformation, I was booked to have my surgery on 19th of November, 2010.

My next post will be all about my experience having the decompression surgery. Thank you for reading, if you have any questions please feel free to comment or contact me personally! x

Tuesday, 19 May 2015

Having ICP Monitoring

Last Friday I went into the national hospital to have an ICP monitor put into my head. This was the first operation I have ever had so as you can imagine I was pretty terrified and being thrown in the deep end that is, brain surgery. If you have Arnold Chiari Malformation and are yet to see your surgeon, he or she may suggest that you have an ICP monitor in order to determine what would benefit you most; a shunt or a decompression. This is a really accurate way of reading the pressure inside your head every minute of the day. As mentioned in my previous post, this all depends on wether your surgeon believes a shunt could be an alternative to the decompression as this is such a big and invasive operation if it can be avoided, it will be. 
The ICP monitoring procedure sounds rather daunting. I have to admit that I was so anxious about it! It involves your surgeon drilling a small hole into the top of your skull and inserting a small wire and bolt into the tissue area surrounding your brain. This is then secured with a second bolt outside your head to make sure it doesn't get pulled or come out during the monitoring time. The remaining wire on the outside is left so that it can be plugged into a laptop which monitors the pressure of your CSF over 24 hours or more if the surgeon needs to collect more data. 

What the procedure feels like... awake!  

I arrived at hospital at 7.30am and luckily got told that I would be first in theatre with Mr Thorne, so I didn't have long to let my nerves get the better of me. Most people having this operation are given the option of having a general anaesthetic or a local with lots of sedation. I obviously opted for a general as I'm sure like most people, the thought of having a hole drilled through my skull whilst awake was just unimaginable. Within half an hour of being at the hospital I was called down to theatre and greeted by Mr Thorne and my lovely anesthetist who made me feel so relaxed and reassured that I was in the best hands. Then she gave me the news I did not expect to hear... I was going to be AWAKE during the operation! Although I had opted out of being awake Mr Thorne decided that it was too high risk to be asleep throughout the procedure. The main reason for this being that they wanted to talk to me throughout the operation to make sure they had not aggravated my brain or damaged anything as some (very few) patients might experience a seizure during the op - a risk that I did not want to take. So off I went, walking in what felt like a weirdly calm bubble into the operating theatre. Waving goodbye to my teary eyed mum was definitely the hardest part. When I got into the operating theatre I was asked to lay down on the bed and place my head onto what I can only describe as a small hollow cushion in the shape of a toilet seat - weird I know but that is literally the only way I can think of describing it. One thing I must say to anyone having this done awake... DO NOT look around the room! Look at the floor until you are lying down. I very regrettably looked at a trolly that reminded me of something from a SAW film, really not a good move! So anyway, after I got over that little blip the lovely anaesthetist got me a heated blanket and put my cannula in. Everyone was talking to me not that I remember any of the conversations as the after effect of being sedated is luckily memory loss of most of the experience. When they put the sedative in it feels cold and odd for a few seconds and then you feel absolutely wonderful. I'm not joking. I felt like I was floating on cotton wool and didn't have a worry in the world. I don't remember much after that until the drilling begun when I remember my head shaking a lot and somebody had to hold my head still because it was so aggressive. That makes it sound awful but honestly, you are so highly sedated you hardly remember anything and don't really batter an eyelid when it is happening. After 45 minutes from drilling time I was ready to go to recovery and rest up for half an hour until my drugs had worn off. I do remember this part quite well as I remember asking the nurses what they were gossiping about and then told a lady that she had great skin... I was still pretty much completely off my face but they seemed to like telling me all the nurse gossip...I think! Shortly after my lovely chat I was wheeled back to my ward and left to sleep for half an hour. Then my mum, sister and boyfriend came up which was the most delightful sight! 
Here is a picture of me looking my best with my new head accessory a few hours after the op...

The orange/ pink bit around the bolt is just bandage covered in Povidon-iodine (surgical anti bacterial solution) and the wire is connected to the computer as you can see here...

Once the monitor is plugged in you can sit up and unplug yourself to go to the toilet and you can even go for a short walk to stretch your legs. Unfortunately my Chiari related dizziness was at it's all time worst for most of 4 days in total so I was unable to get up unassisted and to be honest, just the thought of walking around made me feel nauseous. Apart from that, having the bolt/ wire wasn't as bad as it seems. I have been so unwell recently that laying in a bed for most of the weekend wasn't such a bad thing. Also, having great family and friends around to visit made it much more bearable along with plenty of magazines and a trusty i-pad for catching up on 'American Horror Story' - a miserable choice I know, but I am addicted to it at the moment and anything to put my mind off the fact I was attached to a computer by my head was worth a try! 

Having the bolt removed... with no pain killers...

After 24 hours of being monitored the doctors had collected enough data for me to have the bolt and wire removed. I think I was dreading this part more than the putting it in part as I was aware I would be without pain killers. The reason for this is that it is too dangerous to inject anaesthetic into your head with an open wound as I think from what the doctor said, it can make you brain dead and also cause seizure. So, the doctor wheeled his little trolly over to my bed and moved my bed so that I was lying flat. I then got my trusty neck pillow, grabbed my mums hand and calmly breathed as the doctor unwound my bandage. I have to say that this was really sore. It stung a lot, so much so that I ended up with my neck pillow in my mouth. Then comes the unscrewing of the outside bolt which was also very painful and uncomfortable but it is also over before you have time for it to get unbearable. Then the worst and almost final part is taking out the inside bolt... I'm not going to lie, I found this part absolute agony. My head was pounding, the wound was stinging like mad and I could hear the bolt squeaking and grinding through my skull. My boyfriend had to hold my legs still because they were flapping everywhere as I was trying so hard not to make any noise. After that little nightmare is over you are stitched up. Luckily the stitch is already in and all the doctor has to do is tighten it, unfortunately mine was not tight enough so the doctor took it out and put in two new stitches, which were the icing on top of the cake of pain. This just stings like a bitch. After the ordeal I was given lots of morphine and left to lay flat for two hours, which was good because I was still so dizzy and exhausted. Here is a lovely picture of me around four hours after having it taken out, looking erm... great... 

After this I stayed in bed for another day and night until I was ready to get some not so fresh London air and try out my new set of wheels... 

Getting the results... I'm having more brain surgery! 

A week later, now out of hospital I was going back in with my mum to meet with Mr Thorne to get my results. We drove into London this time as my dizziness means it is almost impossible for me to go on the tube and I am still a little nervous about the use of a stick or wheel chair on London Underground (I must read up about that!). Long story short Mr Thorne explained that they found the data very useful and that it was a successful outcome. He then went on to say that my CSF was of a normal pressure and that because of this, a shunt would do nothing for me. So the only outcome is to relieve pressure from around my brain stem in order for it to ease the pressure it is putting on my spinal cord, causing my debilitating symptoms. Mr Thorne then reminded me that this operation will not cure my condition, it will most likely alleviate my symptom progression and mean that I can have a better quality of life to how I'm living now. The operation is called 'a posterior fossa decompression' for anyone who was wondering. You can find details of it here:

Harriet, my sister, has had this surgery and will be posting all about her experience sometime this week for anyone who is due to have it or just curious. 

Stay positive and strong and have a great week everyone! 

Please feel free to leave any questions you may have on here or you can follow us on twitter and instagram @chiarisisters   


Friday, 15 May 2015

Neurosurgeons are simply wonderful

Hi everyone, apologies for my late post. I was supposed to write this two weeks ago but unfortunately I have not been well enough and have found it really difficult to concentrate (Chiari Malformation messes with my concentration a lot). 
Finally, here is my update on my experience with a neurosurgeon... 

Two weeks ago I had my first appointment with neurosurgeon Mr Thorne, who will be attempting to eliminate some of my debilitating CM1 symptoms. I am being treated at The National Hospital for Neurology and Neurosurgery (NHNN) in Queens Square, London. Luckily for me the hospital is just a short train journey away and it happens to be the best neurological hospital in the country so I already felt extremely lucky and at ease about being treated there.
However, I did find myself feeling really anxious about meeting my surgeon. I wasn't really scared of what he was going to do but more so what he might not do. I have read and heard lots of stories about neurosurgeons who have limited experience with CM1 due to it being so rare and so patients often feel let down and have to get a second opinion. Many people also get told, like I did (explained in the previous post) that their symptoms are not related and that the CM1 was found whilst scanning for something else. It is true, many people do live with the brain herniation and never present any related symptoms so therefore surgery is only performed if the symptoms have become debilitating. I guess surgeons need to be very careful about making the decision to operate, after all it is a serious operation which is not only very dangerous but can also be unsuccessful in the long run.   

I was greeted by Mr Thorne's registrar, who was very welcoming and jumped straight in to asking me to number my symptoms in terms of which of them effected me the most. This was difficult to do as all of my symptoms effect me so much in different ways. I started with my memory and concentration, explaining that these had deteriorated dramatically over the past few months. I then went onto my balance, headaches and chocking. He then turned the lights off and did a quick basic eye test and also tested my reflexes and balance. After doing so he explained that there was some damage to my left eye - on top of everything else! And that I am clearly being effected by the condition. 

More news I was not expecting - ICP Monitoring 

He went on to explain that after looking at my MRI and completing various tests he and Mr Thorne were unsure if the typical CM1 decompression operation was the best thing for me. This was quite startling news as I hadn't herd of any other treatments for the condition before then. Mr Thorne then came in to meet me and explain what was going to happen. Firstly I'd like to say, what an amazing human! Mr Thorne was so friendly and reassuring, he explained everything in immense detail. He told me all about a procedure that has been introduced to CM1 patents which is set up to understand the exact cause of each symptom. This procedure is to determine whether I would benefit from a shunt, which would reduce my CSF pressure or if it would be better go straight in for the big decompression - I will explain what all of this means below. The procedure is called ICP monitoring. It involves having a wire and bolt placed into the skull which is connected to a computer which monitors the pressure of your brain fluid to determined if you have too much fluid pressure (which is caused by the brain herniation/CM1). He went on to say that it is urgent that they perform this procedure as soon as possible so they booked me in for the following Friday and explained that I would be in hospital for up to five days. Because the operation was so soon, I was sent off straight away to have my pre op, which just consists of taking blood and answering questions about my health history. 

And so that was pretty much it! I will be writing a detailed post of my experience with an ICP bolt, for anyone who may be getting one or just curious as to what it's all about. I'll leave you with a picture of my MRI compared to a 'normal' MRI so you may be able to get a clearer idea of what all of this means. 

A short description of CSF and why a shunt can be used 
*please remember I am not medically trained these are just rough summaries from my understanding* 

Cerebrospinal fluid (CSF) is a clear fluid found around the brain and spine. CSF pressure is when this fluid is blocked or there is too much of it causing dangerous and irreversible damage to the brain. 

A shunt is commonly used to treat an excess buildup of cerebrospinal fluidShunt systems drain excess fluid from the brain to another part of the body where the fluid is absorbed as part of the circulatory process. 

Chiari Malformation is a form of abnormality in the lower part of the brain know as the cerebellum. Here is my MRI - I have circled the herniated cerebellum.

If you have any questions please feel free to leave a comment. Have a great day everyone and stay positive! x


Monday, 27 April 2015

Georgia's diagnosis

Hello everyone! I hope you all had a splendid weekend. Following from our last post I thought this would be a great time to introduce ourselves properly and tell you all about our diagnosis experiences. As Hattie is at work I'll start with me, the big sister! My name is Georgia Wilson, I am 23 years old and I have Arnold Chiari Malformation and Syringomyelia. Last Christmas I was given news that would change my life forever.  

I do not feel good!   


It was three weeks before Christmas last year when I remember having that instinctive feeling that something wasn't quite right. Seeing as it was the run up to Christmas, I put my severe tiredness, head aches and muscle cramping down to the stress of work, festive shopping and the aftermath of the odd over indulgence of mince pies. I had suffered with pretty intense migraines since I was 15 so when I had a couple in a row I wasn't too alarmed and just spent the weekend in bed to rest up. The following Tuesday I remember waking up feeling extremely nauseous and had a terrible throbbing ache at the back of my head. I got to work feeling exhausted and particularly weak. By late morning I was convinced I was either coming down with the flu or it was the start of a third migraine. By the afternoon my health took a drastic turn.

999 Emergency 

It was quite clear that I did not have the flu and that this was not your average migraine. Within an hour I had almost completely lost my sight in my left eye, my hands and legs had gone completely numb. Within minutes my tounge was numb,  I had pins and needles in my feet and all over my face and chest, I was dribbling slightly, my head felt like it was going to explode and I could not string a single sentence together. Luckily, after a short time my boss called for paramedics and notified my mum that I needed to go to hospital. I was rushed into the high risk area of A&E at UCL hospital in London, which is very luckily opposite where I worked. I could hardly see the paramedics or make any sense of what was going on. 

Am I having a stroke? 

I was taken to have a CT scan as doctors were convinced I was having a mild stroke. Shortly after a doctor came in to tell me that they had sent my scan images to a neurosurgeon in Australia as they had found something abnormal that may be causing this onset of symptoms. Dazed and tired, I waited anxiously with my boyfriend, mum and sister Hattie. The lovely doctor came back to ask if my mum had packed me an over night bag. She then took a seat (the dreaded, I'm going to sit down because I am telling you some bad news kind of seat) and asked if we had ever heard of Arnold Chiari Malformation? Our jaws dropped. Yes, we knew all too well about the condition. My sister had been diagnosed in 2010 and had already undergone a decompression operation for the illness. I already knew from this point that my life would never be the same again. We sat for what seemed like hours in total shock. 

A confusing conclusion  

The next day I was sent for an MRI of my head and the top of my spine. I got my results on that day and went straight to see a consultant specialising in neurology. She tested my reflexes, coordination, eye sight and asked me lots of questions about my health history. She had come to the conclusion that my symptoms where not related to my brainstem defect and suggested that I suffered with chronic migraines and fatigue. I felt very confused by this sudden change in opinion and wasn't really sure how to take it as my MRI showed a clear defect in my brainstem along with a white area in my spinal cord which she explained was a condition called Syringomyelia. The white area was a Syrinx - which means cyst in the cervical cord. 

Simply having a wonderful Christmas time  

Before we knew it Christmas had arrived and I was home. With it being my favourite time of year, I used every bit of physical and emotional strength I had to join in with the festive celebrations. I was feeling dizzy almost everyday, had a constant head ache and every time I stood up without taking it slowly I would almost faint. I spent a lot of time sitting down and found myself extremely lethargic after just a few sips of alcohol. I managed to stay positive and determined to get better, especially for Hattie who had been so brave for so many years. 

Second consultant appointment 

The new year had arrived and I was on my way to see the top neurologist at UCL. He patiently listened to my long and tiresome list of symptoms and gave me the same examination I had previously undergone. He then confirmed that my symptoms where that of Arnold Chiari Malformation type 1 and that my pins and needles, numbness and fainting episodes where more than likely caused by my syrinx. I felt a huge sense of relief that he had no doubt I needed treatment and has arranged for me to see the neurosurgeon at the end of this month. I feel anxious about that however I am really looking forward to getting some of my life back! 

I will be sure to give an update of my experience with the surgeon. 

If anyone reading this has any questions or any comments they would like to make please feel free to leave a comment or ask any questions on our twitter page @ChiariSisters