Research into Rare Disease Epidural Lipomatosis

Hi, I have been diagnosed with... Epidural Lipomatosis... What is that? Have you heard about it before?  I had never heard of it before. I have been suffering from back pain for around 7 years. I was complaining 6 years ago. I even said to my physiotherapist that I felt I would end up in a wheelchair by the time I was 40 and at this time I was  31. I was told it is just a sign of getting older it is wear and tear. Over the years I would just plod on in life on pain medicine. However, ever my back pain had taken a turn doe the worst about nearly 3 months ago now. I don't like to complain but this was worst than giving birth. Called my GP every day of that week she was trying to help me with medication. On a Thursday I was getting into bed and I wet myself. Friday morning the first thing I did was call the GP once again she said to go to A&E I have 2 children at home and my husband was working I was in far too much pain to drive. I do have some amazing friends though. My friend picked me and the children up taken me to the hospital and children MacDonald's. I would of much rather gone to Macdonald's. Anyway sat waiting by myself in A & E thinking I'll be sent home with meds which would work this time. While waiting hearing the clock ticking and people coughing. I felt this warm wet feel down my left leg. What is going on I had wet myself again. I didn't even know I needed the toilet I didn't even feel that I had started. Watching this puddle form on the floor left me confused upset worried and super embarrassed. When one of the ladies came out from around the reception deck I got her attention and while sobbing I was just about able to explain what had happened. She was so kind and understanding she went to get a nurse who wrapped a blanket around my waist and started to walk to a small more comfortable waiting room. As I stood up my back pain was so bad I could have screened. As we were moving I was struggling to stand not just because of the server pain in my back but my right leg felt like I was dragging in like it was not a part of my body it was heavy and very numb. The lovely nurse got me a pad and some hospital trousers. She had to help me dress as my back and the loss of my right leg were making things very hard for me. The nurse found me a bed to lie on while I was waiting she said it may be less painful for me. The waiting didn't feel like it was that long before I was seen and had been sent down for MRI. After MRI I was sent back to my bed and I had fallen asleep. Then got woken up by my Doctor saying that there is something on my spine and I would have to go to another hospital to see a spinal specialist. They put me into an ambulance and after 10 minutes of driving I asked them to stop I said I can't stand the pain. They were very kind and patient with me. They lay me down on the hospital bed this was so much better. When I arrived at the hospital I was told I need Surgery to remove the fatty growths on and in my spine. I started to panic a bit because of all the complications that could happen... They said I can sleep tonight and sort op in the morning. Then morning comes around and they have done a u-turn on what to do. They said it would be super dangerous to operate. The spinal specialist said I'm only the 4th case in the world he knows about.  So now 9 weeks on still incontinent and unable to walk sleeping in a hospital bed..... You would think in 2023 I have fatty growths on my spine that would be easy to sort out.  Siobhan Tear