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Spinal epidural lipomatosis
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Hi @postie15. Thank you for joining Scope’s forum. It is great to see you have joined us. How are you today?
It sounds like you have been through a lot, especially with pain. I am hearing that despite being right, you understandably have a lot of questions which you have unfortunately been left to process on your own.
We don’t provide medical advice here on Scope’s forum but we can listen and I am hearing your concerns. I don’t have any personal experience with spinal epidural lipomatosis which means I, unfortunately, can’t share a personal experience with you that I know is what you are looking for.
I am sure we will have community members who have experienced this who are able to share their experiences with you though. In the meantime, I am wondering if you have been left with any contact details from the hospital? – such as a consultant who you may be able to contact?
Also, you might find our sections ‘chronic pain and pain management’ and ‘rare, invisible, and undiagnosed conditions’ useful.
Take care for now and I will look forward to hopefully hearing from you again soon
Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.
Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only. -
Good afternoon @postie15
I am so sorry that you are struggling and are in so much pain. We can't give medical advice in this forum but I appreciate that it might be helpful if someone from the community was able to give insight and share with you how they manage the condition. I've replied to your post to "bump" it up towards the top of the forum discussions. Take careOnline Community Adviser
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Hi,
I'm 38 with 4 children. For the last 6 years I have had bad back been to and fro with go physio ect anyway. 9 weeks ago my pain pain was unbelievably all week then buy the end of the week I lost all control of my bladder and bowl. I was rushed to A&E. They did an MRI at this point even standing was becoming unbearable. The MRI showed Epidural lipomatosis on the bottom of my spin it was pressing on my equinor. They rushed me to spinal specialist hospital. They said I need an operation immediately.
How about I chose to wait until the morning just so that I had time to get my head round it. When morning came they decided the operation would be to dangerous. So come then sent back to the original hospital. I can't walk and I'm in continent after 8 week not better so now I'm home with stairlift special chair hospital bed and 2 wheelchairs. Special things for Bach ect.... So I'm so sorry for you. I have not yet any good news regarding this condition sorry
Regards <Moderator removed personal details> -
Hello @SiobhanTear
I'm sorry you've been through such a hard time. If you are comfortable sharing, can I check you have enough care in place? Also, are you receiving support with looking after your children? I hope you have a good support system in place but please do let us know if there's anything you feel would be additionally beneficial.
When is your next hospital appointment? I hope you have some good news soon and begin to feel a little better
I'm also going to email you shortly, it's nothing to worry about but please keep an eye out for that.Online Community Co-ordinator
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Hi,
I'm a bit confused because I've help from hospital come. She said she was there to do BLUE BAGE AND PIP I've not had pip paperwork yet. She helped with blue age now she is gone. I have no hands-on help my husband and children are helping me. Life is super hard not what any of us expected... -
So sorry to hear about how this terrible condition is effecting you and your family. It seems like doctors and others don’t know how to treat this condition properly. I am currently being ill health retired from work and I now have to use crutches to move around as my SEL is getting worse. I’m only getting 25~30% pain relief from 30 tablets a day. It has taking over my life. I do have a blue badge and a bus pass now and also attending the chronic pain clinic which I would recommend to help understand how to live better with chronic pain. I wish you well and wish we both could have some miracle cure.
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