Last year I had to be admitted to hospital after being unwell for a week, where I had a CT scan and it was suspected they could see a bleed on my brain. To confirm this the hospital decided they wanted to do a Lumbar puncture despite it being slightly out of the time frame which would give them clear results. I had the lumbar puncture, and it was decided that I was okay, it was possibly a virus and I could go home.
Once home I developed a different headache. So excruciating every time I sat up I had to lay back down again after a maximum of 10 minutes. I started vomiting constantly and developed muffled hearing and tinnitus and pain between my shoulder blades. It took several trips back and forth to the doctors and hospital before a neurologist finally gave a diagnosis of a suspected csf leak. Basically the dura which runs from the base of your skull down your spine carries in it the csf fluid which surrounds your brain. Sometimes when a lumbar puncture is done it makes a hole which does not seal over so the fluid starts leaking out. The lack of fluid around the brain causes it to slump down and press on nerves giving a severe low pressure headache when upright. They decided then and there to perform a blood patch. This would involve taking blood out of my arm and injecting it back into my spine. The blood would clot over the hole and form a scab which would stop the fluid leaking. I was told I had to lie flat immediately after the procedure in hospital for the first 4 hours and then I could go home. Straight away I got my hearing back again and already felt different. I laid in bed flat as instructed and was in agony. I wasn't allowed any painkillers because nobody had written me any up. Once 4 hours had passed I was told I could go home and resume normal activity. They kept telling me how rare this was and that this would fix it.
Post patch I tried my best to sit up and get on with it. The headaches were not quite as bad and the other symptoms seemed to have gone. This lasted about 1 week after which I started vomiting again, my hearing went and the headaches got worse. Months of going back and forth to the doctors and being admitted through a and e due to dehydration because I couldn't keep anything down I finally had an appointment with a neurologist. He concluded that I was still leaking, had a low pressure headache and needed a second blood patch. Before he did that though he wanted me to have another MRI just to check nothing else was going on. The problem with a leak is they don't very often show up on imaging scans which makes diagnosis even more difficult but I had all the classic symptoms of a csf leak. A couple of months wait for the MRI which I had but whilst waiting for the results I became so unwell I was readmitted to hospital. My headaches were getting worse, I couldn't keep anything down at all and was having clammy episodes with my BP going up and down all over the place. My sugar levels were low and my body deconditioning.
It was then that the neurologist came to see me to explain that he couldn't convince the anaesthetists to do the procedure needed. They hadn't come across this before and thought one patch would have solved the issue. He promised to keep trying for me and came to see me and offer his help ofter. About a week in he disappeared. I was then left with a gastro consultant who didn't have a clue and just wanted to send me home. The nurses argued this and said I wasn't well enough to go home. This is when I came across the CSF Leak Association. The only UK charity for this type of illness. It can occur spontaneously or through a lumbar puncture. I was shocked reading all their info to find I had not been given the correct advice after the first patch. You are supposed to lie flat for at least a week, no bending, twisting, lifting or straining for a few months following the procedure and various other advice which I did not receive. No wonder it hadn't worked! After joining the facebook group I met many others in the same position as me. All being told how rare it was and all struggling to get the treatment they needed. I also learnt that a lot of people need about 3 patches before it Is a success and some need a special fibrin glue to help it seal. The team looking after me didn't want to know. Finally I was told I should have 4 steroid injections into my head to block the nerve. They were telling me is was a low pressure headache but this can not be fixed with this treatment. No painkillers are going to help! When I said I wasn't keen I was told that they wouldn't consider anything else until I had tried these and if I didn't have it done now then I would have to wait 6 months for it as an outpatient. Basically I was bullied into it. The procedure was done two days later and I was sent home. I had to wait 6 weeks to see if there was any improvement. Nothing changed.
Back to the GP and he couldn't understand why they hadn't done the patch in the two weeks I had spent in hospital. So he reffered me back to neurology. A different neurologist this time who decided I hadn't been treated very well and he would sort out a second patch. This was done a few weeks later and this time I made sure I followed the after care instructions given by the accociation. The neurologist had said he would ring me to see how I was getting on a couple of weeks after the patch. He never did. About a month or later I started vomiting again, my headache had definitely improved but things were still not right. I phoned to remind the neurologist to call me. He still didn't. I finally got to see him 5 months after the patch when he was dismissive and not really interested.
Fast forward to today and I can not walk very far, I am clumsy, forgetful and trip over my words. I suffer with awful pains in my head, I constantly feel sick and vomit, my hearing is muffled and everytime I get up and start walking I come out in angry hives which burn all over my body. I have finally managed to get a refferal from my gp to see a specialist neurologist who is also on the medical advisory committee of the csf leak accociation. He is based at the National hospital for neurology and neurosurgery in London. I am really hoping he will be more knowledgeable and be able to help me.
Before all this started I was in the middle of taking a sabbatical from my job as a performer in Disneyland Paris. I had been there three and a half years in the job I had wanted since I was 15 when I went to visit with my dance school. I had only taken a leave to return to support my family through a difficult time. They were so good to me and extended it a further year but heartbreakingly I had to give my notice in. It just wouldn't be possible for me to dance and perform in this state. I can barely walk. I had finally achieved all I wanted, I was working in the industry I had always wanted to, I had a contract that didn't have an end. Something very few performers get the opportunity to have. Now it is very unlikely I will dance or perform again. I always had a dream I would open my own Saturday theatre school with the aim in particular of inclusion of special needs children. In the state I am currently in that is now also a distant memory.
As soon as I came back to England before this happened I got myself a temp job in retail and started teaching dance and musical theatre. I then moved on to work as a full time nursery assistant at the local day nursery. I lost my teaching jobs when I became ill and on the advice of my doctor can now only work two hours each day at the nursery. They have been fantastic to me and I am very grateful. I try to go in every day but sometimes I can't even manage to get in to do two hours on a bad day. I applied for some help from the dwp. To claim ESA (employment support allowance) for people who can't work due to disability or illness. I was told I was not entitled to any support because 1 and a half of the past three years I was not working in the UK therefore my NI contribution wasn't enough. This is despite working since I was 15 (I am now 31) paying my all my taxes, never before asking for any help but I am being penalised for three and a half years of my whole working life because I was working in a different EU country. I feel really let down. I have had to move back in with my parents who struggle enough without having me to have to also support. I sleep on their sofa because I can't afford a bed. I earn about £180 a month if I manage to get into work every day. I am starting to get desperate. I just don't know what to do anymore, I physically can't work any more than I do, I wish I could.
I am asking for help primarily to get me to my hospital appointment to see the specialist. As I mentioned I can't walk very far or stay upright for long periods. It is about an hour and 25 minutes to the hospital from my house. The best form of transport would be a taxi which would take me from door to door but this comes at a cost of roughly £150 return. My appointment is on the 23rd of May and short of not eating anything or buying any medications I am just not going to be able to save that much in that time. Secondly, I would really benefit from a bed and mattress. Just a cheap single one that I can use after medical treatment and help to support my back and head. I don't think the sofa is really doing me much good. Anything extra I would use to get through the month, contribute to household bills etc and buy medications and pay for transport to appointments. My main goal of this is to raise funds to get to my hospital appointment.
I absolutely hate having to do this and put my story out to the public. I have always been very independent from a young age. I have always paid my own way and worked hard to get what I had. In the blink of an eye though that has all gone. I can't offer you anything in return for your generosity at the moment but I do intend to pay it forward for every donation made, however small. Each donation I get, once I am in a position to do so I will help another person in need either financially or with a random act of kindness. I really believe that we can help each other change difficult situations in life.
Thank you so much for reading all this and thank you in advance for any help you may be able to offer x
*UPDATE* I have just gone and looked again and brain fog must have taken over because it is £150 each way not return 🙈 so I have increased the target to £300.
A massive thank you to all who have donated so far, I really am blown away by the generosity of complete strangers. Thank you xxx