Megan's story

Hello, my name is Megan. I would describe myself as a fun and kind-hearted young woman who loves and values nothing more than her family and her pets.  

In 2011, my mum was diagnosed with Chiari I Malformation and in January 2013, she went to the Walsgrave hospital in Coventry for her decompression surgery. A few months later, she was diagnosed with meningitis and hydrocephalus and as a result, needed to have a VP shunt. Around a year after her surgery, we noticed that I started to get a lot of headaches, to which I was referred for an MRI. Shortly after, I too was diagnosed with Chiari, however, my doctors wanted to take a more conservative approach with medication. Not long after the COVID pandemic, my mother’s younger brother also had an MRI and we discovered that he also had a small cerebral herniation, along with an aneurysm. We had found that this was picked up in a previous MRI from years, but was never dealt with. Surgeons at the Walsgrave Hospital wanted first to deal with his Chiari decompression, and then tackle the aneurysm. In 2023, my sister was diagnosed with Papilledema and required a lumbar puncture, but has since, thankfully, had no further problems. Today, it is my turn now to wait for my surgery. 

These events have changed the lives of my whole family in various ways. The largest of which was the sudden death of the best uncle in the world. In September 2022, Adrian Collins went in for his stent operation to fix his aneurysm. What seemed to be a fairly quick recovery soon turned to our worst nightmare. He endured a massive ischemic seizure as a result of a blockage in his stent, and was immediately intubated and put in the neuro ICU. A few days later we were told there was nothing else to do and we made the tough decision to take him off life support. We subsequently donated his organs. An experience I will never forget was when we made the “hero walk” down the corridor and listened to the theme tune of Only Fools and Horses and “You’ll Never Walk Alone” as he passed. As a result, 2 people received his kidneys and will hopefully go on to live a long and healthy life, and his pancreas went to research.  

Currently, both mine and my mum’s condition are managed under medication. However, we will both have good days and bad days. Unfortunately for her, she has gained further conditions, but she still manages to be my rock and we are each other’s greatest support system.  

My mum is my biggest inspiration. She is the best and strongest woman I have ever met, and I am honoured to have her as my mother. She has endured more trauma than anyone should have to go through, and sometimes she struggles, but I count my blessings in that I get to share this world with her.  

I wish in general that more people knew that not every disability is visible. Just because I don’t look like I may need help doesn’t necessarily mean that I don’t need assistance, or that the simplest/smallest of movements doesn’t have a negative impact on me. 

For me, I have always found comfort in the fact that the Brain & Spine Foundation researches and supports so many conditions, whether they are genetic or have occurred through an injury/accident.  

To remain as optimistic as possible, I like to think that nothing can stop me in my day to day life and I will still be able to do all the things I can now, post-surgery. However, I also strongly advise people to tell others about what they are going through. It can be really difficult sometimes and it is imperative that you have a support system. Without one, you could suffer some days and feel like giving up. But be strong. You will get through it.