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

Hi I have been diagnosed with Epidural lipomatosis a while ago. I get very depressed some days from the pain. I can't walk or stand much at all! Ya I can't do the things that I love to do. And I'm 59 years old. They say I got it from steroids or being overweight. I wasn't over weight when I got diagnosed but in my 30s I was using a steroids for allergies that I sprayed in my nose . Does anyone have any information for my pain.

@rknutson03 I wanted to welcome you to Connect. I am a spine surgery patient. I have not had too much use of steroids for asthma, but it is something to be concerned about, and can also be a cause for osteoporosis too. When you can't stand, that makes it hard to get exercise to keep the core strong to help protect the spine. Have you thought about seeing a pain specialist? Would physical therapy help this? My PT does a special method called myofascial release, and what it can do is to loosen the overly tight fascia and tissue in the body with a gentle massage like pressure. That may be able to take pressure off a trouble spot. I have had a lot of relief from this myself. Here is our MFR discussion for more information:

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
What did your doctor recommend?

I am wondering how your epidural lipomatosis is doing now. I've just recently been dx with it via an MRI before yet another lumbar epidural steroid injection. I am of the opinion that injection should therefore not have been done. So, I've skipped now drs plans to do 6 ablations, in favor of a referral to a neurosurgeon about this epidural lipomatosis. I found some very good information at: https://orthopedicreviews.openmedicalpublishing.org/article/25571-spinal-epidural-lipomatosis-a-comprehensive-review Specifically, on it's pages 24-25, where it explains the best method of diagnosing.

SEL is pretty rare, as I understand it, and based on the lack of any new posts here, I see it's not a subject a lot of people are talking about. I need to know if anyone who has lost weight has seen relief in pain. How much did you lose? What type of pains were abated? I suffer from intense muscle spasms, "electric shock" pain, and general muscle fatigue. My doctor attributes my symptoms to my severe spinal stenosis, and doesn't even consult me on SEL. I don't know which condition contributes most to my pain but any input from anyone would be most appreciated!!

@pjbchicago Welcome to Connect. It can be difficult to figure out where symptoms are being generated when there can be more than one source. However, don't let an alternate possible source distract you from addressing severe stenosis. It doesn't really matter if you have an opinion different from your surgeon. You can address both sides of the issues. It's easy to scare a surgeon out of helping you if they think you will not benefit from their surgery. That happened to me (ironically in Chicago) when I had symptoms generated by my spinal cord compression that were not recognized as being related. I ended up at Mayo and had surgery that fixed the issues, but any of the local surgeons could have done the same surgery which was a simple one level fusion of C5/C6, it's just that they didn't believe it would solve the problem with my crazy pain. It was after I found a medical case study with similarities that I approached Mayo asking about this. When you are caught in the position of discovering what your surgeon missed, no one will listen or help, so you have to go elsewhere.

The problem with severe stenosis is that you don't know when the symptoms will become permanent, and when loss of function will happen when nerves die from the compression. The spinal cord doesn't regenerate itself like a broken bone would, so healing is very limited. Of course there is research going on now, but your options are what is available here and now if you are suffering from spinal cord compression. Stenosis can also describe compression of nerve roots where they exit the spine. The key to a better outcome is removing the pressure before the nerves die. Once that happens, it's permanent and there isn't a medical miracle available.

Sure I know spine surgery is a very big decision. It should be, and you have to consider what is happening to your body if you don't have surgery in comparison to having surgery that requires some compromises and adaptations to how you have functioned in the past. You also need to have an excellent surgeon, so find the best you can that is in your insurance plan. I had excellent results and all of my pain and dysfunction was resolved by my spine surgery because it was done before permanent damage was done.

What are your concerns about severe stenosis? What does your specialist suggest for you?

I understand what you're going through! I was diagnosed in 2019 from an mri... they would not steroids due to the fact it will make it worse.... i understand the pain and walking is difficult for me.. i was wondering do you have a pressure pain/ cramps etc when you try walking?

I know what you are going through! I found out in 2019 I have epidural lipomatosis...it has effect my life in the following ways.... walking or standing for any period of time is awful the pain is really bad!! I get this pressure pain/ like cramps in my back that will make you tear up or yell out in pain.... when they found out I had this i wasn't over weight nor using steroids the pain goes down both legs and I also noticed when I lay on my left hip I will have my right side down my hip to my foot I get this numbing falling asleep feeling and if I lay on right side it will do that on my left side... i went to go see a surgeon over this couple years ago..they said loose weight Blah blah blah... i wasn't over weight in the start and now I am! You can do much without this pressure pain in your back... I'm depressed most days... it's really sad you're quality of life is reduced to laying in bed on your side because laying on your back isn't good... to the point you only get up to go to the restroom and that's a challenge most days....so I understand what you are going through! Please feel free to send me an email ask questions maybe I can help answer them...now I have a question for you... my doctor said no more epidural injections because it will make this worse has you doctor say that to you? And what was they say that caused your epidural lipomatosis?

Plus I'm also in my 50s

@tarzy2023 I just wanted to welcome you to Connect. I don't share your condition, but I do understand how an epidural injection could make a condition worse. If you already have pressure and you inject some fluid, that may just increase the pressure in your spine. I did have an adverse reaction to an epidural injection in my neck. Hopefully you'll connect with other members here who understand your condition.

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