Hi, my name is Grace. Im a 35 year old mother to 5 amazing children.

In May of 2025 I was diagnosed with IIH, idiopathic intracranial hypertension.

This condition is caused by a build up of spinal fluid that surrounds the brain causing it to become compressed. This causes agonising headaches, chronic migraines, and blindness.

During an MRI it was also discovered that I have Chiari malformation 1. This means that the base of my brain is being pulled into my spine. This then causes the brain stem to be crushed which blocks the brain fluid from draining among other things. This in turn causes IIH. To fix this a simple operation is performed where a small piece of the skull or vertebra is removed to create more space for the brain. This allows for the spinal fluid to drain and the pressure to balance out.

Im currently mostly bed bound and unable to do most things we usually wouldnt even think about. Showering, preparing a meal, even hanging laundry. As a mother I've had to take a step down from caring for my children and accepted the help of family. This is utterly soul destroying in itself.

I have lost 30% of my vision and no one knows if it will return. As a seamstress by trade this has forced me to stop working as I can no longer see what im doing. I can no longer read my books, sew, crochet or write. Everything I used to enjoy i can no longer do. The left side of my body has become numb and weak due to compressed nerve roots in my brain. This has caused me to be unstable on my feet and unable to handle cooking, alot of cleaning and normal activities. As well as these issues I have been suffering the most unbearable head pain. Its like nothing I've ever experienced. My skull feels like it may crack at any moment and that it would actually feel like a releif. Facial swelling, neck stiffness, temporary blindness, TMJ, ear pain, watering eyes all contribute to the struggle.

Unfortunately the NHS is overwhelmed, underpaid and understaffed. It may be years before Im even considered for the surgery. For now I have been given multitudes of varying painkillers, all with their own lists of unpleasant side effects. Unfortunately none have worked so far.

I have spent untold hours in a and e as my GP in unable to help when things are bad. But a and e can only do so much. My only option at getting my life back is to have the surgery done privately. Not only is this faster but also expensive. As a disabled woman unable to work due to this condition this is unattainable. This is why im reaching out to the community for help. Anything is always appreciated. I hope to finally get some releif and go back to living a normal life where I can work, play with my children and enjoy life as its meant to be enjoyed.