Research into Rare Disease Epidural Lipomatosis — Scope | Disability forum
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Research into Rare Disease Epidural Lipomatosis

MrsTear
MrsTear Scope Member Posts: 11 Connected
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 

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    edited April 2023
    Thanks for sharing your story @MrsTear I'm sorry that everything is still so up in the air for you right now. Hopefully our members can share their thoughts on what must have been a frightening time for you. 

    Are you still in hospital now, or do you have a hospital bed at home? And how are your children doing?

    It's lovely to hear you've got friends who you can rely on to support you, that really makes a difference :) 
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    Scope

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  • MrsTear
    MrsTear Scope Member Posts: 11 Connected
    @Alex_Scope Hi
    Thankfully I am home now with a hospital bed.  Children are amazingly resourceful. My teens have been so helpful around the house and they have helped the younger ones. My 10-year-old has gone into nurse mode she wants to help me with everything the 8 years old is finding it hard that I'm not taking her to school or the park we are not walking the dog together.  I wish I could find some help from someone to make me more mobile...
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Thanks for explaining so quickly @MrsTear children can be surprisingly resourceful, and I'm so pleased to hear that they are supporting each other, as well as you :) Do you have a trusted support network around you to help manage looking after your children?

    Dealing with such a big change can be very difficult for everyone involved, and it can be easy to perhaps feel guilty about what you can't do right now, but remember you're not to blame. 

    I'm certainly no expert, and would always advise talking to your GP or other medical specialists, but it may well take a lot of time before you're able to more mobile.

    Have you been able to consult with an occupational therapist about aids and adaptions for your home?
    Online Community Coordinator
    Scope

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  • MrsTear
    MrsTear Scope Member Posts: 11 Connected
    @Alex_Scope
    I have amazing friends and they are fantastic support for us all. They even did a rota when I was in the hospital. To make sure the family had a hot cooked meal every evening.

    It is hard not to feel bad when they don't  100℅ understand. I'm sure we will get there it has only been 2 weeks.

    There is no hope at all for me to walk so that is hurtful. But yes my OT has helped with grip rails and bath and bed. We had to take out a loan for the stair lift.

    Thank you Alex for you time to talk it's been nice x
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    No problem at all @MrsTear it's lovely to hear how things are going, even if they are challenging and a bit of battle!

    I'm glad you've got that OT support too, it makes a big difference when that support is there for us.

    You definitely sound like you are all more than capable of adapting to these changes, especially given time, but of course it does still impact on everyone's mental health, so do speak to someone you trust if you are struggling. 

    Let us know how things are going as and when, and take care :) 
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    Scope

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