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L5 Laminectomy Next Week Due to Epidural Lipomatosis

Slkep2004SSlkep2004 Posts: 95
edited 06/11/2012 - 7:37 AM in Back Surgery and Neck Surgery
Hello everyone. I enjoy reading this site because I can totally relate. I come here to hear about others like me. I feel better when I read about your lives or sometimes I'm saddened for the ones in so much pain. I had a double fusion about 8 years ago and have lived rather well until a year ago. After much ado and many doctors, we have found that I have a rare case of Epidural Lipomatosis. It's a fat pocket in the epidural space pressing on my S1 nerveroot. Spine Surgeon is going in next Wednesday and is performing a laminectomy and is going to retrieve all of the fat. I was informed that my surgery was going to be recorded in some medical books because it's uncommon to have an epidural lipomatosis. I just would like hints on what I can do pre op to make things easier on myself and family. What can I expect when I wake up? Is it going to be as bad as the fusion wakeup was? Am I going to have tubes and stuff all over me? Will I get up my first day? Will I be able to handle the pain? How long will it be real bad? My mind is just running wild with me and any input would be greatly appreciated. I know I sound like a chicken but I'm really not. It's just nerves. Thanks everyone for listening.


  • I was told that there was a 10% chance that when she's scooping out the fat from the lipomatosis that she could tear the wall of the dura(I think) and that is where you lose clear fluid which is spinal fluid and get the headache of all headaches. She said she would then micro stitch it up and that I would have to let it heal. Should I be spending my energy worrying about this or am I being reasonable to consider the possibility? or am I just scaring myself? Does anyone have any more facts on how often this happens or anything you can add that may make me feel more comfortable please?
    Thank you for listening to my worrywarting.
  • Welcome to SH. I don't think I've heard your particular predicament on here. Did you do a search? Hopefully someone will be able to give you some insight. The only thing I can comment on is the dural tear. I believe that there is a chance of this occuring with most spine surgeries. During my fusion surgery this summer I was "nicked" from L3 to L5. My surgeon glued and sewed it shut. I had to lie flat for 48 hours - not even a pillow - to avoid the headaches. I was warned that if I didn't I could wind up with a headache that would put my back pain to shame. Needless to say I laid flat. I'll never know whether or not the lying flat was easier that having to get up within hours of fusion but I didn't get the hadache.
    Good luck with your surgery. Let us know how it goes. You could be famous!
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  • Thanks for the welcome. My new name should be "almost famous". haha

    Thank you for the input about the nick of the dural. She did inform me that it could happen and I heard you had to lay flat for a couple of days. I'm so glad you didn't get that headache. I have heard reports from the Drs that it is the BIG ONE. My guess is no matter how good of a surgeon you are, it happens once in a great while when you're trying to clean it all out in there. May the force be with me.

    As for the epidural lipomatosis, I've researched it like crazy. I've been lectured on it by my Surgeon and my Dr and we are all in agreement that it has to come out...now. It's uncommon enough that it is hard to get statistics on it because there just haven't been enough cases to form real stats. My surgeon has seen it upon opening someone up for other reasons. She succesfully removed it. She has never had to operate strictly to remove one until now. I'm excited to have it out of there so it will quit making my leg, hip, and buttock hurt.

    Leave it to me to grow fat in my epidural space! Thanks again for the information, Jan. It helps a bit to know that staying flat worked in not having the headache. I will let you know when I get famous by this blubber-pocket in my back!

  • I'm glad I helped with the dural membrane question. I have heard that the laminectomy surgery you will have is a relatively easy recovery compared to the fusion we had. Hey, if we can get through a fusion we can do anything! Good luck and let us know how it turns out for you!

    PS How are we supposed to keep fat in our spines under control???? I have to work so hard at keeping the obvious fat to a minimum, hidden fat - that's just not fair. :)
  • it would be perfectly reasonable to ask your doc what her successes and failure rates are for any of the possible things that could happen. I know that I had no problem asking my doc how many patients did he have that got the infection in their spine and things like that before he ever did any spinal procedures on me. When I had my gallbladder out I also aked that surgeon jow many patients he had that had any of the possible complications. It really set my mind at ease and reassured me to get those answers from the doc actually doing the surgery. Good luck and keep us posted.
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  • haha Isn't that right?! Hidden fat is totally an unfair condition.

    I'm feeling a little less nervous today and you are right, if we can get through fusion surgery, we can do just about anything. Someone on here gave me some relaxation ideas and I've been putting them to use so it helped today through pre-op appt. at the hospital. (thank you, you know who you are) My son and I were discussing how maybe in just one month I'll be back to my outdoor walks that I loved so much. I'm very hopeful today. Have a good weekend everyone.

  • Hi there. I don't know how I missed your comment until now. Better late than never. Thanks so much for the encouragment.

    You are right. It's definitely best to ask the dr in charge. In my final appt with her the other day, we sat and talked for about an hour and just went over every single little thing on my list and on hers. She gave me many statistics, warned me of complications and all kinds of other information. I always walk away from those kind of surgeon appts. scared to death. She told me up front the risks, the possibilities of no decrease in pain, the possibilty of infections, on and on. Still though, I'm at the point where it's do or die. I have a new small list of questions that I'm going to call her assistant with after the weekend. I am going to get them all together then bombard her again!

    Thanks again and I'll let you all know how it goes.
  • I was just told Monday that I have epidural lipomatosis but i have not seen the surgeon yet. I cannot find much helpful information about this problem. When you were initially told did they perform some blood or urine tests to rule out Cushing's? I am overweight but would not classify myself as morbidly obese, i have not been on steroids for anything and I am at a loss for why i have this problem. Would love to know what the doctors did or said about your problem and would like to know how the surgery went.
  • Hi everyone. Hi Mandag. What a whirlwind tour this has been. Went to have surgery in Dallas at 6am Wednesday morning. They ran late and finally got me in around 11 ish. They put these neuro leads in my hair and got glue everywhere, it's still there as I can't bathe yet and even fingernail polish remover won't get it out. yuck! They were in to remove the mass of fat I had grown that was poking into my nerve. She was ab le to remove a walnut sized amount of fat, she removed a bone spur, she removed massive scartissue and she worked on a bungled up ligament. Also, unfortunately, my dura was nicked and I sprang a spinal fluid leak. She did a repair with glue and shut the rupture. I had to lay flat on my back for 36 hours and it was very difficult. I got home yesterday. The hospital took good care of me. I have walked out into the backyard. I sat on couch and watched trickortreaters last night. I'm just very weak and pretty drugged. I'm happy though because most importantly, I have no nerve pain. Zero. It's remarkable and nearly a miracle. It's so weird to not feel it. I want to say more but i'm getting real woozy so I have to lie down.
    mandag, I will come back later and type out all of the info I know for you about the lipomatosis. I'm not really fat but I'm burly. They spoke of cushings, yes. I am a thyroid patient of many years. They think the endocrine system may be related to this problem. It's pretty rare.
    I have to go now. I'll try to come back later.
  • I was surprised to see another 'Epidural Lipo' or SEL
    (Spinal Epidural Lipomatosis)'victim'...I was diagnosed after having a Myelogram. I had Cervical Spine Discectomy w/fusion, but my lower back was what actually sent me into the surgeon in the first place! The Cervical Spine Surgery was a breeze, hardly any problems at all, so we scheduled the Laminectomy within about 6 mo. of the Cervical, I was having major knee pain so cancelled the laminectomy so I could have a knee replacement!After doing that,I started having thoracic pain back to front into my chest,and the Dr. that did my Cervical Spine, wanted to once again just give me Injections, I had gone through that and they did not help, so then I went for a 2nd Opinion from a Neurosurgeon,he ordered the Myelogram,which revealed the SEL,I too had never heard of it,so started my 'research' and yes, I found it is very rare,especially in women!I asked my dr. about 20 questions regarding it (by fax) and he had his receptionist call to tell me to 'quit researching'..well,to tell me that made me just research more.I went to another surgeon for another opinion at a well known well respected Univ. in TX. and he said "not going to cut on you yet"..the only thing I can suggest is to lose weight which may or maynot help!I did that..a medical weight loss program,but only lost 20lbs. according to research it takes more than that to affect the 'fat' in the SEL.I had another MRI,which the SEL was not mentioned,so I am in process of finding out why it was not mentioned,the Dr. at the Imaging facility,gave me an addendum stating that in reviewing all my (probably 10 lbs. of film)that he agreed it was there (the Epidural Fat) but was not causing any Stenosis (though I have Spinal Stenosis).I am in such pain that I cancelled a cruise for my husband's 80th birthday,since we neither can walk over 30 min. w/o rest. I also spent approx. $6000 for chiropractic adjustments and they have done no good.So,the search is still on.Yes,by all accounts Very Rare..but not one doctor has come up with a solution as yet. I would love to hear from the person that had the surgery for this problem as to how they are now doing in recovery. Thank's very much!
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