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Spinal epidural lipomatosis (SEL) - how to get rid of pain?

Posted by bernice1964 @bernice1964, Mar 22, 2023

Needing help with relief of this!!! Was diagnosed a few weeks ago. Spinal Dr. Told me to lose weight, I’m not opposed to that at all. In the meantime, what can I do for the pain?? I have tingling down backside of both thighs, weakness in knees, and horrible lower back and bootie pain. Any suggestions????

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cacat | @cacat | Sep 3 8:18am
In reply to @bernese53 "I had a cervical spine fusion (2-level) done at Mayo Clinic Rochester in April, 2019. I..." + (show)
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I had a cervical spine fusion (2-level) done at Mayo Clinic Rochester in April, 2019. I also have severe stenosis in my lumbar spine. In January of 2023, I saw my surgeon’s PA who ordered MRIs and other tests. I also have been diagnosed with spinal epidural lipomatosis and told to lose weight and I have managed to lose ten pounds. What really helped with the pain was a foraminal steroid injection and a course of physical therapy.

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@bernese53 How were you able to lose weight? Did the Dr. prescribe something to help you since exercising was painful?

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wdawes | @wdawes | Sep 4 3:23pm
In reply to @icoder "I'm an SEL patient. I was diagnosed with an MRI. I also had the comment "The..." + (show)
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I'm an SEL patient. I was diagnosed with an MRI. I also had the comment "The worst they've ever seen". It is considered severe. It covers 9 levels of my thoracic spine and is completely filling the space in that area so much so that there is no space for spinal fluid. I am not overweight. But losing weight was the only option given to me. Some doctors suspect it's my steroid replacement therapy causing the problem. I also have secondary adrenal insufficiency from 2 pituitary resections. My endocrinologist claims I only take a maintenace dose of hydrocortisone so it's not likely to be causing the SEL.

The reason I ended up here is that I am looking for advice on a back brace. Does anyone here have a good experience with using a back brace? Like most of you I have trouble being on my feet for very long. I get about 30 minutes max before I need to rest. That also extends to sitting upright like in a desk chair. Thankfully I am retired and no longer sit at a desk.

Any good back braces out there to help with thoracic spine SEL?

Thanks,
Jeff

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@icoder
I have been troubled with both thoracic back pain (for years) and lumbosacral radiculopathy for the past two years (I am told from post lumbar laminectomy syndrome.)

The radiculopathy was tested with nerve conduction study and EMG … definitely originating at L5/S1 area. So, I recently had a Medtronics SCS trial, and, when they pulled the leads out (after the successful trial) of my epidural space between thoracic T8-T12
… it really made my thoracic back pain worse! Nausea started 10 minutes after the SCS leads removed… still nauseous 3 weeks later. I once had CSF leakage after a lumbar laminectomy and this felt was similar, symptoms-wise, so I asked my primary care doctor for some MRIs to rule out CSF leak. The thoracic with contrast showed spinal epidural lipomatosis. I will be seeing a neurosurgeon (about the SCS implant) in 3 weeks and will be also asking about minimally invasive surgery to remove the fatty deposits in my thoracic epidural space (the lipomatosis.) I don’t want to go through another laminectomy, unless that is the only option. By the way, my BMI is 24, I am not overweight and have not had excessive steroid usage … though I do wonder about some of the thoracic epidural steroid injections done in the past, by pain management doctors.

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