Spinal epidural lipomatosis

postie15

Hi and thanks for letting me join your group. After 10 years of thinking I had a slipped disc that was causing sciatica it turns out I have spinal epidural lipomatosis. I am a postman in Scotland and for almost 10 years I have had many physiotherapist appointments and treatments which never helped me. I am taking 20 tablets per day to help with the pain which is constant. Only lying down flat seems to help a little. I also was coming home from work in tears due to the pain. I was walking upto 15 miles per day limping and in agony. 

Anyway. After pressuring for a MRI scan it turns out all my disc are fine but as I said earlier it turns out I have spinal epidural lipomatosis which I believe is a rare condition and from what I read is due to steroid use( which I have never used) or being obese(which I am not). I am worrying myself sick as I have been left in limbo. I have been told I am being referred to a neurosurgeon and don’t know how long this will take and what the next steps are. Will I need injections? will I need an operation? or is it being told there is nothing that can be done and I will just have to live with this unbearable pain for the rest of my life and give up my job. Can I ask if anyone here has suffered for the condition and what the outcome was please?  Thanks for taking the time to read.  

L_Volunteer

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 

Sue_Alumni

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 care

MrsTear

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>

Cher_Alumni

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.

MrsTear

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...

postie15

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. 

MrsAnthony

I know this is a old thread but my partner has developed spinal epidural lipomatosis and I was wondering if anyone on this thread got help or was able to return to living the life they lived before the condition, from my understanding the nhs is still fairly clueless on what to do but It would be great to know if people in the uk with the condition do get the right help eventually. Any reply would be appreciated and I do hope it got better for everyone affected by it, thank you.

galido1958

I'm so sorry you are suffering with this condition and I do hope that they will be able to help you. I have lived with my chronic pain for over 20 years now and it's never got better only more painful I'm sorry to say. In the first instance I was told it was in my head basically. I wasn't diagnosed for over 3 years. I don't think some people get chronic pain syndromes, they think you are able to control it, needless to say it's the pain controls us. I can not work around my pain. I'm not in control of it, and it just gets worse. I saw somebody here mention how they are having pain meds taken away, I'm also going through that at the moment to . I've been here before and I did fight it but tbh I have just run out of fight.

I hope that you get to see someone soon and they will have a solution for you. And if you feel you aren't getting any where have a chat with your Doc and tell him how bad it is and ask him/her can help speed things up.Good Luck 🤞

MrsAnthony

galido1958 are you living with the same condition? I only ask out of curiosity as over 20 years seems like so long without proper help with it, I’ve read that they are doing more research into epidural lipomatosis and I’m hopeful that there will be a break through and they we be more effective at treating it.