I’ve been writing this for a long time however it’s today that I’m choosing to push past my fears about publishing and use my excitement to press the button, so here goes. I hope that you enjoy reading and join me in my journey.

Who I Am:

Hey, my name’s Tiegan-Elise and I’m 15. I was born on 22nd June 2004. I’m the youngest in a family which consists of me, my brother Nye (18), my sisters Rhianna (23), Megan (25), Mum and Dad.

Ever since I can remember I’ve had pain, I had lots of “quirks” and showed signs of some of the syndromes that I have now been diagnosed with (we were unaware that they were symptoms and thought I was just a kid with lots of “quirks”).

When I was very young I had a speech delay, I was three when I started to talk properly however I still struggle with speech – I am very lucky though because I have a wonderful support system who help me and have taught me how to get across what I am trying to say in other ways, including using actions.

Over the years, I spent much time in the walls of hospitals as they tried to work out what was wrong and why I was having the symptoms that I was, pretty much having test after test including MRI’s, other scans and blood tests. And having got pretty use to the insides of hospitals, especially the children’s area and A&E.

I was diagnosed with Dyspraxia when I was seven and EDS (Ehlers-Danlos Syndrome) shortly after my eighth birthday.

Sadly at the time I was at a school which has now been investigated for abuse from the headteacher and several teachers, I was one of the many victims – targeted because of my illnesses and medical absences, the teachers and headteacher found to be abusive were removed from their positions and the school is now being run coincidentally by the incredible headteacher who also runs the secondary school which I’m a named pupil at now.

I count myself lucky because I was young and didn’t fully realise what was going on and some of which I did know I didn’t fully understand the full extent of how bad it was.

My parents tried to shield me from as much as they could and until it was broadcast on the news when I was quite a bit older I still didn’t know how bad it had been so I was able to have a better childhood than I maybe would if I had known.

I transferred to a new primary school in January 2013 and luckily was welcomed in by other students and staff, and quickly made lots of friends.

I was enjoying my life a lot until everything came crashing down in October 2013, when I got in the car to go to school (I was having a bad pain day but I wanted desperately to go to school) and I had a sharp stabbing pain in my back, it was so sudden and painful that I screamed, then the whole of my back was in agonising pain and I couldn’t move my legs.

Despite this, I was still desperate to go to school although I didn’t last until lunch time before I was sent back home.

My mum took me to our local A&E where I had an X-Ray which showed that I have Scoliosis, then I was sent for an MRI which showed that I had Chiari Malformation (with brain stem involvement) and Syringomyelia (the syrinx went from T4-T8 and pushed on all sides of my spinal cord), I was still unable to walk.

I was rushed through to neurosurgery at another hospital as I was classed as an emergency.

In December 2013, I went to hospital for what originally was planned to be a Foramen Magnum Decompression.

However, when my (at that time) Neurosurgeon asked about what headaches I was having, they seemed to him to be pressure headaches. Therefore I instead firstly had a surgery where they placed an intracranial pressure monitor bolt into my brain, this showed that I had Hydrocephalus and on the 18th of December 2013 (which was also coincidentally my cousin’s baby’s first birthday) I had a VP shunt placed which took the excess intracranial fluid into my stomach where it then interspersed, it also decreased my syrinx by a tiny amount which allowed me to walk again.

In January 2014 I started being taught at home by hospital tutors. Over the next few months my syrinx refilled and so, in June 2014, I had the Foramen Magnum Decompression surgery.
Quite a lot of things happened in the rest of 2014 and 2015. Some of which, although it has made me the person I am now, isn’t necessary for me to add in here, some of which I can’t remember much about and others are personal family or friend issues.

In early 2016, after a lot of trouble with my teeth, I had an oral X-ray which showed that one of my teeth was coming down on an angle but myself, my family and orthodontic team decided to wait a year to see what it would do because of all the other medical things I had going on.

Fast forward a little to the summer (I think) through what felt like thousands of appointments, several new unexplained symptoms and more, I started to struggle with intracranial hypotension, which worsened as the months went by.

On the 14th of August, loving both the British soap Hollyoaks and editing (and after making sure that my mum was ok with it!), I created an Instagram fan account for Hollyoaks to show my love for the soap, and also have something good which I could hide behind from the bad things going on in my life. I loved it!

My hypotension continued to worsen and in November, I ended up in A&E and a day or two later I had a telemetric ICP monitor placed into the front of my brain.

Sadly we were told several pros about the machine and how they used it at the time which we only discovered after the surgery had been very misleading. less than a month later, I had a detethering surgery as I had Tethered Cord Syndrome, during the operation I was overdosed on fentanyl and afterwards, whilst I was still anaesthetised, I was left alone for 51 minutes.

When I was eventually found I had to be resuscitated and given the antidote to the overdose. Ever since then I have been visually impaired.

I found losing my vision extremely hard mentally and emotionally as well as everything else, this was made a lot harder when the hospital that carried out the operation denied that the vision symptoms were real and I was accused of making them up.

I started having strong dark thoughts that lasted a few minutes in early 2017, they became quite frequent and I told my mum about them, talking to her about them helped and they became a lot less frequent and then rare.

Throughout the year many things happened and nearer the end of the year, the dark thoughts came back more often and stronger but because of other emotions that I was feeling at that time I didn’t tell anyone for months, during which time they developed until they became constant and strong, before I finally broke down to my mum who really helped me in many ways.

In March 2018, I finally had an operation where they exposed the tooth which was coming down on an angle and placed a gold chain in the hope that with a brace it would pull the tooth down into the right place, this was a very complicated process as the tooth which was previously taken out had been the wrong tooth and the tooth which needed to be taken out hadn’t been so I had to have a palate brace with retainers before train track braces could be placed.

Throughout the following month, my health deteriorated in many ways including the hypotension deteriorating so much that I could no longer sit up without a very intensive and severe headache and within a matter of minutes passing out, no longer receiving the signals from my bladder and more. The year was really quite tough with my health issues and family things, but there were amazing moments too, including being given a tortoise whom I called Teddy Crwban for my birthday, finding out that my sister Megan was pregnant (shortly before my birthday), visiting the Hollyoaks set (a huge thank you to everyone who organised it and for being so amazing and kind with me having to keep lying down) and starting my personal blog on Instagram.

Around November I went to a new psychologist who said that she was pretty sure that I had PTSD alongside low mood but would have to properly assess me. Because she worked at the same hospital where do much has gone wrong and which is a big trigger for me, she thought that it would be better for me to have a transfer to another service, where I am having therapy for PTSD, Depression and Anxiety among other things.

In early 2019, many things happened including my extremely loved first niece Alora being born, being diagnosed with my “umbrella condition” Set D1A Syndrome, having train-track braces placed onto my first four teeth – which will be accompanied by the rest of a complete set later on because when they were placed there were complications which meant that my orthodontist couldn’t continue and having my VP Shunt surgically tied off which increased my ICP enough for me to be able to sit and be upright without pressure symptoms. Since the operation I have been unable to lay without five/six pillows propping me up because otherwise I have severe high pressure symptoms and my back pain increased by severe amounts among other things but that doesn’t mean that I’m not grateful that I’m not in the same situation as I was in before the surgery.

In August I was finally certified as visually impaired, after being eventually transferred to a different hospital (which had no reason to cover up what had happened) when we won a long battle to be. This meant that I could finally start receiving the help I desperately needed and continue to need, it will be a long road and although I still hope with all my might for my old vision to return, I’m so grateful that I am finally getting this help.

There have been many tests including procedures, scans, and more in the last few months to try to receive some answers on why I can’t lay down, why there has been a very high increase of pain, and more without clear unconfusing answers. I’ve been put on several more medications with the knowledge that doses will increase if I’m not allergic (which I frequently am) and they will be accompanied by more medications soon. I’ve been on trials including an Accupunture course which was hoped to improve my non-existant bladder signals but sadly didn’t work and now there will be discussions about catheterisation in the next appointment with my urologist and I’ve been on waiting lists for surgery (which may be happening in March) but despite how anxious, sad and low all of this makes me feel, I will remain positive because I have to continue, continue living, continue fighting not only for me and my future but for those around me and it’s a lot easier to do that with a positive mindset.

Why I’m here:

Now that you know a short summary of my life and hopefully more about me than you knew before, I will tell you what I am planning to post on here, basically everything in or about my life, from my favourites to my ten top tips (which will be about a range of topics that I have picked up tips for over the years, days, weeks of my life, recommendations, medical bits, updates, hopefully some positivity and so much more.

I really hope that you have enjoyed reading this post. I’d love it if you joined me in my journey and followed this blog, I’d also love to find out more about you, so please comment something or some things about yourself.

Bye for now, I hope to see you again soon!
Lots of Love, Tiegan Elise x