Claire needs multiple spinal surgeries

Hello, we are asking for help today for our friend Claire, who needs multiple spinal surgeries.

Claire is the person who everyone turns to for help and advice, she worked for an Autism Charity supporting young people, ran SEN Parent Support Groups in Manchester for years and is a passionate Autism & LGBT Advocate. She has helped countless friends and people in the Manchester Community whether it has been through her Advocacy role or just by being Claire, this time it is her that needs help.

Enough from me, I will let Claire speak for herself....

Hi, my name is Claire and I need your help.

TLDR: Multiple Spinal Surgeries needed in London for severe Bone Erosion, Compressed Sciatic Nerves and Complex Spinal Cysts. This is what I’m asking for: we need help with costs for accommodation, food, parking, petrol and everything involved before, during and after my surgery. We have a home to keep going in Manchester and trips to London for appointments, Neuro Urology, my bladder and bowel are badly damaged at this point. Surgery prep, Spinal Surgery and the long road to recovery. The expenses just keep mounting up.

In November of 2022, I fell down the stairs at home and was taken to A&E. They carried out a routine CT scan on my tailbone, and during the scan the technician told me to take care of myself, I left thinking what a love, little did I know he saw something on my CT and simply didn't tell me. 

I walked back to the waiting room like John Wayne, my back and butt were absolutely killing me. The Doctor prescribed some strong painkillers and then sent me home, with me thinking that I had a broken my coccyx and it would heal in a few weeks. The Dr warned me not to do any lifting, bending or twisting and to make sure I really rested up for the next 8 weeks. Neither the Doctor or the technician were able to tell me what they saw on my scan as they had to have it verified, it wouldn’t be until December, the day before my 40th birthday I would get a report that would turn my life upside down. So I went home with painkillers and didn’t think much more about it, I just tried to manage the pain. But it wasn’t just horrible back pain I was experiencing, I also had skull-splitting pain and every time I sat upright it would hurt but if I lay down it would settle. Unfortunately, that headache lingered for days and I was violently vomiting every time I sat up, so after several days I was back in A&E for another CT scan. This time I had to have a head CT, as they suspected a bleed on my brain from the fall.

While I was cleared from a brain bleed they didn’t spot or act on was the Cerebral Spinal Fluid leak I was having at the time. There was fluid leaking down my spine and pooling into a spinal cyst.

A cyst doesn’t sound so bad does it?

Just cut it out, that’s what you’d think right?!

But it's attached to my spine. Your spine has loads of nerves, all connected around your body and they all have different functions. Bladder, brain, bowel, even down your arms and to your organs: they go everywhere. Due to the delicate nature of your spine and what it does, they can’t just simply drain or cut it all out.

My cyst is 7.3cm x 4.3cm and located from my L5 vertebrae right down down to my S4 vertebrae, pushing my spine. And because the cyst is being drip-fed cerebral spinal fluid, this flow of fluid has caused severe bone erosion. When you look at the MRI of my spine (mine is on the right in the photo above), it looks like the cyst is sitting on top of my spine but the bone is completely worn away. It’s gone, it has been completely eroded away by the cyst. Because of this, I’m in constant pain.

My sciatic nerves are entirely compressed by the cyst at this point, my MRI shows them squashed flat. They could be permanently damaged, it will be surgery and lots of post operative care to see how damaged each of the nerve branches are.

I need this surgery to improve the quality of my life, to try repair my bone erosion and stop the severe nerve damage. My health has deteriorated so quickly and it's been life changing for our whole family. I was someone who loved to hike, go on adventures and on an average day I would do 20,000 steps running around after the kids! 

There are 3 Tarlov Cyst Specialists in the whole of the UK - London, Wales and Scotland.

London is my closest option, and in my opinion my Dr is the most skilled at this. Therefore, all of my care HAS to be at the University London College Hospital, under the complex spine unit. As I live in Manchester with no option to relocate, I will be travelling back and forth for treatments and appointments.

The Dr told me to be in my wheelchair full-time to avoid any bumps or falls, the bone erosion is too severe my spine is too fragile to withstand even a small knock. Unfortunately, my self-propelled wheelchair was moving my spine about too much whilst using it, and it became far too painful for me to use. The Council, Adult Social Care and Wheelchair Services all want me in a wheelchair full time, but they couldn’t provide a suitable wheelchair that can go in our car or fit up and down the ramp I would need outside my home. I have reached a crisis point, I couldn't even leave the house, so in July I had no other option but to pay £2500 for a new suitable wheelchair and additional £400 for a spare battery. Almost £3k on a credit card because Wheelchair Services don't have the right chair available!!!!

Until June I was still working as Change Maker for an Autism Charity, supporting autistic young people and working to improve autism acceptance through understanding. But I worked past the point of being physically OK because I utterly adored my job. I mean it, I loved my job and all the young people and everything my charity does but I was in so much pain and the medication was making it harder each day to work due to the cognitive impact. This means we now have financial instability without two incomes. I’m sure a lot of people can relate and I appreciate we are in a cost of living crisis. Now I have a credit card bill for a Power Wheelchair but no wage coming in but my main worry is the upcoming costs for travel and accommodation in London.

My surgery and care are all at the University College London Hospital, as we live in Manchester, all the appointments are all down South in London. From where we live, Google Maps says it's a 4 hours drive , but it's never 4 hours in reality though is it? And we'd have to travel with 2 kids!

We will need to go to London several times for appointments and checks, then the surgeries in London Queens Square Hospital where I’ll be in for weeks. We need help with accommodation costs and expenses while we are there. These surgeries are essential, and I need to make sure our bills are covered while I recover. But more importantly my husband has some where to stay and kids can visit when I’m in hospital. 

My children are autistic, and I am their main Caregiver, so it will take a great deal of planning and preparation on my part to get everything ready for me and for them. My son is Non-Verbal Autistic, he has ADHD with attachment and he needs to be near me. For these reasons we will rent an Airbnb, then my husband can WFH and care for the children and our children can visit me in the hospital as much as they need to do whilst I recover. 

This is what I’m asking for: we need help with costs for accommodation, food, parking, petrol and everything involved before, during and after my surgery. We have a home to keep going in Manchester and trips to London for appointments, Neuro Urology, my bladder and bowel are badly damaged at this point. Surgery prep, Spinal Surgery and the long road to recovery. The expenses just keep mounting up. 

 The Neurosurgeon has told me that the recovery from the initial surgery can take up to three years due to the nerve damage I have. Nerves don’t always repair and there’s no guarantee my surgery will be successful. 

Ultimately I may be disabled for the rest of my life but I am learning I can ask for help, so here it is, me asking for help. Thank you for reading this.