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Epidural lipomatosis
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.
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@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.
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1 ReactionI 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?
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1 ReactionPlus 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.