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Please respond with your story of Epidural Lipomatosis

bonniebbbonnieb Posts: 26
edited 06/11/2012 - 7:49 AM in Spinal Stenosis
Having Spinal Stenosis,Degenerative Disk Disease,Spondylosis,Bulging disks, Epidural Lipomatosis,and a host of other pain problems...my heaviest concern is the SEL (Spinal Epidural Lipomatosis)and previous Cervical Discectomy 2 level w/fusion, now creating more DDD, I want to 'try' to find out the results of anyone having surgery for the SEL (Spinal Epidural Lipomatosis)as it is very,very rare especially in women...which I am one! I cannot get any consistancy of diagnosis,and/or what to do regarding having this problem..just Physical Therapy, which does not get rid of the problem, or more steroid injections,what if I read from the Duke Website,Harvard,Mayo,and all the other very renowned professional hospital/university sites,the it 'might'be possible that 'steroids' are a possible cause, and obesity being another one. But,since no clinical studies are available or limited at the least,it seems that all spine specialist either shy away from it or just plainly don't want to confront the problem at all. Since I am a 72 yr. old woman, youngish and in other good health,I think I give a false impression of being 'okay'..though I am not,I am in pain 24/7,not just from the SEL but from numerous other diagnosed spinal problems...so what is the answer...more hydrocodone..I try to limit 3X a day, 500mg. though I can take up to 3000mg. I am trying to limit that med. Thanks for any info.


  • Hi bonnieb,

    I am interested in how you have gotten on with SEL, I've just been dx with this along with several other spinal conditions, DDD, OA, TC, SS, SEL, to name a few some I've not been able to get a diagnosis yet.

    My SEL came on after a particularly bad side effect to panafcotelone and a heap of other conditions mostly digestive and autoimmune problems like CD, GERD and so on.

    So please let me know how you have gotten on

    I'm a 52 yr old grannie from west Australia , in a w'chair all the time now days my legs will no longer support me.

    Look forward to hearing from you
  • Bonnie,

    As of my last MRI, I developed Epidural Lipomastosis somehow - I am idiopathic. No Cushings, not overweight, no long term steroids, no diabetes, etc.

    The big thing is you have to keep your eye on any development of Cauda Equina! I also have epidural fat causing stenosis at the L3/4 level (it's a separate piece from the L5/S1 SEL).

    I was told if I become symptomatic (which I am), a Laminectomy would be most likely offered. By symptomatic for me, back pain, butt pain, and my three middle toes (both feet), and the center of the tops and bottoms of my feet go numb. Have some bowel and bladder issues, but no Cauda discussed yet.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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  • Hi Adrienne, I spent some very happy years in Sydney, Aus. Before all of my spinal problems! My husband was with a Geophysical company doing offshore drilling for oil. My daughters were in elementary school, they are now (all 3) in their 50's, so you can figure how long it has been since we left there! I loved it! But regarding my SEL,I have had no further problems from it (to my knowledge) though I still have lumbar pain and also upper back (thoracic) pain. I've gone to 7 doctors, othopedic and neurosurgeons, many injections, just recently (3)injections in my Facet Joints, upper back.We went to Europe on a cruise (our first)my husband is 81 and I am 73..(yes! my photo taken when I was very young..I should change it..but I like the youthful look. haha..it definitely has changed!! I was told to go back to the orthopedic surgeon who did my cervical discectomy w/fusion, for a laminectomy on my lower back (where the SEL is) and
    he could remove the SEL..but I've read too many horror stories about the surgery regarding the SEL, with the surgery itself being successful, but the mortality rate is high. So, I keep searching and I guess as long as it doesn't render me 'incontinent' that seems to be the criteria they base just how serious it is. I am still trying to lose weight as all the doctors say that is the way to go, but not sure losing weight is successful, though that is what they all say! Easier said than done! Take care, and enjoy those grand-babies, that is what we do! I have a darling great-grandson that spends a day with us every week. He is precious! So fun! We have 10 grandchildren too! I would love to take a trip to Australia, we have several friends there after all these years!
  • Hello,
    My name is Jerry and I was diagnosed with Epidural Lipomatosis a few years ago after many years of multiple diagnosis and workups.

    I am writing this to seek any information on your symptoms. While I have been told I have EL along my spinal cord, I don't know what normal symptoms are.

    I have had left arm pain consistently for years. Over the last two years it has gotten progressively worse. At times it seems to flare up. I even have episodes where I get pain, not as severe, in other parts of my body. My left arm is progressively getting weaker and I am getting more scared that in the years to come I won't be able to use my left arm.

    I am currently undergoing trigger point injection treatments to see if this has any impact.

    Thank you for any insights.
  • Howdy and Welcome to Spine Health!! What levels are they saying you have it? I have it at L5/S1, and it is creeping up on L4. For me, most of it is possible bowel and bladder issues (intermittent), pain and numbness on the tops and bottoms of my feet, and when standing or sitting my 3 middle toes on both feet go numb.

    Of late, if I try to lay flat, shooting pain from my back (lower lumbar) to the outer part of my thighs...

    I've had SEL that I know of for less than a year. I know it wasn't on my MRI's a year and a half ago...

    Again, Welcome aboard!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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  • Sorry for the delay in answering, life hasn't been easy of late. Between fighting with doctors and rendered incapable of opening my eyes yet unable to sleep, I've had bout of extreme pain and total loss of my legs with nonstop nerve pain from my neck down.
    I've been to a pain management clinic now and Dx with congenital spinal stenosis so with that and all the other problems no wonder my body's so bad of late. But still onward we go tho not to surgery I don't think that's an option.
    Did you come visit the better part of Australia whilst you were here? West Australia does seem a bit behind th scenes but that suits me nicely, I've never been one for bright lights. I did a three month world trip a few years ago, twice so delightful. We went to NZ, USA, CAN, UK and France. we've a daughter getting married in the UK next year and tho the actual trip will be horrid, I can't wait! But must!

    I do enjoy the kids every time I can which isn't often enough for me, they brighten my day and I wish we were closer"...
  • Hi Jerry,
    I also have numerous problems and it's difficult to know what is causing what!
    But am working my through another lot of doctors in hope of a complete Dx. Then I think I'll go hide in my hole and have no more tests and no way will they get me into surgery unless my life depends on it.. I think it best to get the most out what I've got ...
    They don't know enough yet.
  • Adrienne and Brenda,
    Thanks for your responses. I recently had an MRI and the report came back "normal". I met with my neurologist today and he recommended I specifically ask if the radiologist saw fat.

    A 2005 mylogram indicated "slightly prominence of the thoracic epidural fat, thoracic epidural lipomatosis". So I need to confirm that this latest MRI shows fat - as my symptoms have progressively gotten worse (left arm)

    I have been diagnosed with CSF leaks in multiple spots, multiple times since 2001, but none since 2005. Since 2005 I have only had progressively increasing pain and weakness in my left arm daily, and spinal pain occassionally.

    I don't know the next steps but at 38 and having dealt with this for 6 years of daily pain, I am about at my end. While I take daily pain meds, I refuse to increase the dose and now just live in pain. The stigma of being on meds is so horrible, the looks I get from the pharmacists and other doctors that don't know my story is embarrassing.

  • It's oh so hard to handle, the prof I saw stated I'd congenital stenosis of my spine which my parents handed down tho never suffered to badly from. The as an allergy to cortisone meds I've also have a buildup of fat around my sacral area, but with so much wrong with my back and no complete Dx. I'm 52 had problems, embarrassing problems my entire life, tho the last 10 have been wasted away resting up trying to hid from pain but it always finds me.

    I was recently given permission to increase my drugs so I did the pain was so intense but it made no difference so have gone back to the dose I was on but the pain is sending me crazy I think....

    I increased till I'd doubled the dose but still not stopping the pain, by this time the label druggie was placed on my head I'm sure but I'm back down to just below the dose I was originally on.
    What I want more than anything is to begin living again..

    Wish the best for you
    Cheers Adrienne
  • i have epidural-lipomatosis and i have been told that mine are in the outer chamber of my spine and yet i get numbness in my feet and hands and i get a lot of pain in my back around my lower back and yet so ive been told as mine are where they are they are not causeing my problems and yet they have not found anything eles either i really could do with some help or just talk to some one who is going through the same thing as my self and who has never been offered any treatment thank you
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