Hi - and thanks for visiting my 'JustGiving’ page ❤️

Who I will be raising for money & why can be seen at the end :) STORY TIME (get your popcorn, it’s a long one!)

My name is Sarah Bailey, I live in the Lake district, and just after my 22nd birthday (Jan 2021) I was diagnosed with Chiari Malformation, resulting in the need for Brain and Spine surgery in a matter of months time. I was diagnosed Jan 13th and went for my first brain surgery on February  26th.

'Chiari malformation is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.'

My journey to my diagnosis took over a year. This included many doctors visits where I was repeatedly told that it was 'just a headache' and to take paracetamol, to ambulances being called multiple times due to the extreme level of pain and being in and out of consciousness. After my boyfriend had to phone yet another ambulance mid November 2020 as I was fainting repeatedly and being sick, I was finally given an MRI scan - and taken seriously! 

Within days I was told, in the neurologists words, that I have 'severe abnormalities on either side of the brain, known as the cerebellum...'. Although it was scary to be told there was something wrong with me, in my brain of all places, it felt relieving to finally have a diagnosis.

For me, the symptoms included: Extreme short lasting bursts of pain in my head causing fainting, burning hands, vomiting, loss of vision & hearing, as well as losing the ability to speak or move. These symptoms were brought on by activities from climbing mountains and long walks, to simple things like laughing or standing up. I don't even know how to put the pain into words, but it was absolutely agonizing and debilitating, and could happen at any time.

The surgery to fix my condition (Chiari Malformation), and hopefully stop the pain, included removing a segment of the bottom part of of my skull to create an opening, as well as removing a top piece of my spine. This surgeries aim was to restore normal fluid circulation around the brain. The surgery was approximately 3-4 hours long with a hospital stay of 10 days. 

Due to the coronavirus pandemic, unfortunately I was aware from the beginning I would be in Newcastle Infirmary hospital (2.5 hours from home) on my own for the duration … this was super challenging and emotional, but felt worth it if it allowed me to be able to laugh without the fear of fainting! …

Unfortunately after 6 weeks of recovery and just one day back at work, I fainted and got taken to Carlisle hospital. After over 12 hours of waiting and an emergency head CT scan I was taken by ambulance back up to Newcastle hospital for further examination. As soon as I was awake my surgeon, Mr Hussain, was standing in front of me and informed me i’d be going for a second surgery. This surgery was to re-enter the wound site and to enter the dura, to again make more room around the brain.

Recovery from surgery number two was 10 times harder than surgery number one, with a recovery time of 10 weeks.

Initially for the first couple of weeks after surgery I felt like it was looking positive, however unfortunately it very rapidly went downhill. Once home, I found myself screaming in agony constantly, I couldn’t leave my bed or even look at any light - to the point where my curtains were always shut, the smallest amount of light was agonising, and needing to wear an eye mask at all times. My mum and my partner were having to take full-time care of me including feeding and helping me to the toilet. I was in absolute agony. There is no other way of putting it other than I was in excruciating pain. I felt like I was dying.

We took multiple trips to the doctors asking for guidance, and also went to Carlisle hospital. While there I was given another scan and had blood taken, showing my white blood cell count was high, and that I potentially had cysts on my ovaries - just what I needed! Regardless, I was sent home. 

The finding of my white blood cell being high is important to remember for what happened next...

My mum kept my neuro nurse up-to-date with my pain however we were repeatedly told “it’s normal, it’s just a part of the recovery process”. The pain was just too much, I was literally screaming out for help … but no one at NC hospital was listening to me.

One morning, 5 days or so after visiting Carlisle hospital I woke up to find white liquid, which I now know to be CSF fluid, had leaked out the back of my head at the wound site onto my pillow. We had never been warned to look out for this, so were caught completely off guard. My mum called an ambulance who apon arrival carried me down the stairs, wearing the lovely paramedics sunglasses due to the light, on blue lights straight to Newcastle hospital. 

After being wheeled into the hospital by the paramedic team I was told by the nurse on duty that I just needed a wound stitch and it wasn’t a big deal. They were extremely un sympathetic and told me to ‘get out of the bed and into the chair’. 

What follows is a little bit of a blur, however all I remember was being taken back to the waiting area and bursting into tears. A nurse who spotted I was left in agony helped me, whilst I was screaming in pain, into a hospital bed for further observation... they seemed to just stare at me with no idea what was wrong or why I was in so much pain. 

The night that followed was the most pain I’ve ever been in my whole life. EVER. I was dosed up on morphine to the maximum, but nothing was touching the pain - nothing. 

Just hours later at the early hours of the morning I subsequently had a seizure. 

I was quickly rushed for a ‘brain wash out procedure’, and then taken to intensive care whilst sedated. 

It was soon found from testing the fluid in my brain that I had an infection, I had meningitis on the brain. This was extremely severe and a life-threatening situation. It was thought that I likely had this infection for a few days already and made well aware if I had noticed it a few hours later… well I would likely no longer be here.

The meningitis in my brain had likely been there while I was at Carlisle hospital, shown by the high white blood cell count, meaning everything from that point onwards could have been prevented!...

I remained in ICU sedated and completely unaware of what was happening, restrained to the bed due to being very aggressive because of the infection on my brain. My partner and my parents both came to visit me – I’ve been told I was in an absolutely terrible state.

Thankfully after about a week the antibiotic they prescribed to target the inter-cranial meningitis began to kick in. Very confused and unaware what had happened I began to re-gain consciousness. I was still in an immense amount of pain, but just wanted to go home – I had no idea how sick I was, and no one had the heart to tell me that I was going to be in hospital for a long time yet. 

I was spending the majority of my time sleeping and just very hazy. After about another week I was given my phone so I could pass some time with music or something to watch… although I could only handle little amounts of this at a time.

The pain was still very much present, needing nurses to do absolutely everything for me including washing and feeding me. They tried multiple times to put a feeding tube up my nose however this was extremely painful and I just couldn’t get it to stay in for more than a couple hours – repeatedly being sick forcing it out and causing further pain. I subsequently lost a worrying amount of weight, over two stone in 18 days.

I had now had another surgery to put a drain into the front of my head to deal with the excess fluid on my brain that was proving hard to get on top of. This meant that every time I wanted to move I had to get a nurse to re-adjust the machine and assist me in everything I did. I was told as soon as the drain can come out I could then move to a ‘normal neuro ward’. I kept watching the machine however the fluid just kept coming – I could see a long road ahead.

Thankfully the majority of the nurses in ICU were very kind and attentive, however on one occasion during my stay I was unfortunately dropped whilst being put on the CT scanner. The nurse was being very pushy and told me to get myself off my hospital bed and onto the scanner however after telling her multiple times I could not do it, I was not strong enough, I was pushed across bashing my head, again leading me in agony. This was a constant problem throughout my stay – not being heard and my pain being ignored. 

Now 5 brain surgeries down the line, including putting the head drain in and out, I was off for surgery number 6. After continuous monitoring and a lot of going back and forth about what we can do next, my surgeon and his colleagues decided a VP shunt was the only way forward. Typically CSF fluid is drained down your spine however as I have excess fluid on the brain, hydrodcephalus, I needed the shunt inserted to take the fluid to my stomach directly. My shunt is positioned on the side of my head just behind my ear and feels like a tennis ball under the skin. This is then connected to a tube through a metal rod that goes down my neck through my chest and into my stomach lining.

When I woke up from the last surgery I was as usual, in an immense amount of pain. Not only have they put a cannula in my little toe (you’d be surprised how painful that is!), I was also now unable to sit up due to the rod in my chest and abdomen. My head was thankfully quite numb due to the nerves that had been temporarily damaged in the surgery. When I did finally regain feeling of the side of my head where the shunt is positioned I was extremely upset as it felt extremely foreign. I could hardly hold my head up, it was very wonky to one side - this took weeks to correct.

After a further week and a half, doing lots of practicing standing and sitting, vomiting multiple times daily, and lots of tears, I was finally able to stand myself up and walk - be it only take a matter of steps at a time without using my wheelchair. 

I had a really rough time mentally with my hospital stay between feeling neglected by hospital staff, not having my buzzer answered and being left in my own sick for hours, not being told what was happening and when I be able to go home and just my life feeling like life was spiralling out of control. 

Thankfully after much pushing I was referred to a hospital psychologist who came to visit me on three occasions. He was really lovely and managed to get me a date to aim towards to leave hospital.

Once I was moved into the shared ward I knew my hospital release date should only be days away. When the suggested release date finally came my surgeon came to see me. He confirmed I could go home!! … he would however want to see me again in just a few days time. I was absolutely desperate, I cannot express that enough, I needed to get out of that hospital and get back home.

Finally, my partner and mum arrived to pick me up and to take me home. As they arrived at the ward I melted into tears - emotionally exhausted, and still in pain. I got into my wheelchair and we went to the car. My head was already pounding after a matter of minutes but I thought ‘i can do this, I HAVE to do this’.

The drive home left me in excruciating pain, the bumps in the road were agonising causing me to be sick multiple times. At times along the drive we all wondered if we were doing the right thing.

I was finally home. I could not believe it. Be it I was still in pain, we thought we could manage it at home. 

Unfortunately, after only a week of trying to manage my painkillers at home, and my mum taking full-time care of me while my partner was at work, the pain was just too much. I was taking a lot of morphine and just nothing was touching the pain.

After much convincing, and talking to the hospital staff about how anxious I was to be back in the ward, I was assured I would have my own room to prevent unnecessary pain from noise (the same room I’d been in all that time funnily enough), and admitted back to the hospital.

After experimenting with a variety of different medications, my pain was finally on top of.

Another week in hospital past and I was heading home again. I told myself this would be the last time, and thank goodness I was right. 

The next few weeks Included me trying to get back to normal life. I began to potter around the house independently, which I hadn’t been able to do in over six months, and kept taking steps forward in the right direction…. 

Thankfully things kept improving from here… and to this day my health continues to improve. 

Although the experience has been extremely hard physically, and long-term emotionally damaging which I am still working through, I am SO immensely grateful for the help the NHS provided me. They saved my life, quite literally. I can now laugh, walk, kayak, play with my dog - all the normal things that you can easily take for granted, all without pain!

I have recently seen my surgeon who is really happy with my progression, and will continue to monitor me going forward.

Even though I am out of the hospital, I am definitely not out of the woods with my health yet. I am still suffering a few affects of the surgeries and the hospital experience. I’m continuing to work with a brain injury team who are helping the mental aspect of the recovery. My shunt is also still tender so I’m having this monitored further by my surgeon to make sure there are no abnormalities.

Thank you for following my journey and for supporting me raise money for a brilliant charity to support those who have been, or are, in similar situations to myself.

6 Brain surgeries 

1 - February 26th 2021 - chiari surgery taking away parts of skull

2 - April 13th 2021 - emergency surgery - into the dura to reduce CSF fluid

3 - May 15th 2021 - emergency brain wash out surgery due to menengitus, accompanied with seizure 

4 + 5 - May - June 2021 - Drain removal & wash and restitch due to leak 

6 - June 2nd 2021 - VP shunt fitted to reduce brain pressure & redirect brain (CSF) fluid 

Who am I raising money for⁉️

After learning my  diagnosis, I immediately chose to raise money for 'The Brain and Spine foundation'. The work they do aids peoples quality of life and recovery from Chiari Malformation, as well as many other conditions involving the brain and spine. Research has shown that I if left untreated Chiari Malformation can cause not only severe pain, but also lead to stroke and early death - therefore it is so important it is recognised promptly, and understood as in depth as possible. 

Apon diagnosis I, as most people would, quickly jumped on Google and came across the brain and spine foundation. It was one of the only pages that I felt gave me an understanding of my condition, what it meant, how I could deal with it … and most importantly made me feel less alone. I could see other stories of people who had experienced similar diagnosis’, and how they continued to like fulfilling lives since diagnosis, and found comfort in that. 

My hope is that the money raised can be put towards helping others in similar situations as myself, to be given support, and to continue enabling people to understand neurological conditions. 

What will I be doing to raise money for the Brain and Spine Foundation⁉️

As myself and my partner Michael not long ago moved to the beautiful Lake District, when I am fully healed and have improved health, as well as the weather cooperating, we will be climbing one of our local mountains, Catbells... accompanied by our 3 1/2 foot Olaf! ☃️ ⛰ - and my puppy dog Olaf (can you see the theme - lol) 🐶. We aim to do this within the first couple months of 2023.

I'm sure the mountain will be a big challenge alone after multiple brain surgeries, as well as with the unpredictable northern weather, but to top it off Olaf is huuuge (see pictures) and I'm sure he wont walk himself up - unfortunately! We have decided to bring him along on our fund raising adventure as not only is he apart of our family (of course!), but I hope in having him with us it will attract attention of fellow walkers and frozen fans too!, spreading awareness for the Brain and Spine Foundation and raising money, as well as bringing a smile to peoples faces!

Any donation, big or small will I'm sure make a big difference to someone - somewhere!

To read more on what the charity are all about I'll pop their link below - 

Brain & Spine Foundation | Chiari malformation (brainandspine.org.uk)

Thanks in advance, and I will post lots of pics to follow our journey along the way!! Wish us luck! 👩🏼‍🤝‍👨🏻☃️🐶🧠 ⛰