Episacral Lipoma

[Leedogg]

Hey all,

I've been putting off getting (what I sincerely believe to be) a lipoma removed from my lower back.  It showed up after I had a minor back injury and has been there ever since.  This was 2 years ago in March of 2006.  I even had ultrasound and an MRI done on my back in May of 2006.  Although, they could feel the lump it didn't show up on either test.  They told me to go home and it would go away.  Since all a lipoma is is fatty tissue, this would be consistent with it not showing up on the scans.  Anywho...

My question is this:  Which kind of doctor do I go see to get this thing cut out of my back?  It's on my belt line and is bothersome and I wish to have it removed.

Thanks!
Lee

[chronicback]

Similar issue to what some have described here. I know many of these posts are older, but just want to note my experience that's going on. I've had pain 10 years, I know 10 years is ridiculous and too long. Separate issue I've had neck spine fusions, but to have low back pain 10 years is beyond enough. I've had too many shots to count and zero have worked, so shots are done for now. Also typically cortizone shots aren't an answer, but a temporary solution for many and not a solution. My low back pain is on the sacrum, a little toward the right. So I've had pain into my right hip and right leg for a long time. It's now going down to my right foot and numbness as well. Also, the past month the pain is going into my left side a little bit. My pain center doc knows it's obvious something is pinching the sciatic nerve and you can't just numb that nerve as it's a nerve that controls motor function. One night I went to put some icy hot gel on to hopefully help during sleep and I realized there was a lump under the skin. You can't see it in the mirror, it's still under the skin. It is still there months after I first felt it. I finally let my primary care doctor know and he ordered an ultrasound a few weeks ago and they saw what I can feel. They believe it's a benign lipoma (aka benign tumor.) Usually lipomas are painless, but not always painless and this is very painful. I have a surgical consult on the 26th, this Friday. Regardless of if it's benign or not, they have to remove it because it's painful and constant pain. In the meantime, they ordered an MRI. Of course, I'm used to MRIs or CAT scans and know them to be much more detailed then an ultrasound. So even though the 'lipoma' or whatever it is is still there, the doctor's office called me earlier today to tell me the MRI couldn't pick it up on there. I was like 'what?' which didn't make any sense to me, as it's still there, so the nurse told me to keep the surgical consult appointment, which of course I would because I want this thing out. Supposedly, in my brief research, not all lipomas show on MRI or CAT scan, so then for it to have shown on ultrasound then makes more sense to me and I felt better in knowing that lipomas aren't always visualized on an MRI. Never give up on getting answers, because I've gone through this way too long and pain causes stress and stress and pain can cause depression, and that can take a toll on your body as well as it has mine. My hope is that this gets removed asap and will know more this Friday. It's probably a day surgery and insurance does cover it, so I just want it out and my hope is the pain is relieved by getting that off the sciatic nerve and if the pain is resolved I could then walk more and not have insomnia issues and cut down on medications and have 2015 be a better year and eventually go back to work. Hope this helps anyone dealing with this. While I don't usually advise on online medical research, in my case I had to. Don't let any doctor say 'lipomas are always painless.' That's not true, because if it's on a nerve it can be not that the lipoma itself is painful, but that what it's on is painful. Don't let your pain go on as long as I have, it's taken a huge toll. I used to be so much more laid back and easy going, but the pain I deal with from neck fusions and then separately this low spine pain is very difficult, so hopefully I get this removed asap and hope doctors research and learn more about these.

[sterl1i]

For lipomas to appear on a MRI, you need special settings for the equipment.

T1 weighted sequences, in two planes, in short-tau in version recovery (STIR) and proton-density fat-saturated (PD-FS) sequences in one plane each.

[specialmom]

You must work in this field as I'm not sure what you are talking about!!!  Are you saying that perhaps they missed the issue with the poster?

[littleone29]

Ive had the same trouble as you all, been on amd off for roughly 6 years now and being in my career my back pain is very unwelcomed! I found that gentle exercise for 10 minutes a day helps as well as doing at least 30 minutes a week of cycling, swimming or even walking helps too. I also found that when my periods were due my back pain and the lumps would appear again. But even though i could hardly move i still try and keep up with some form of exercise.

[Gids353]

I had a lump in my back for years that was misdiagnosed as a limpoma. My symptoms match those described on google for "back mouse" aka episacral lipoma. It was very difficult to get a correct diagnosis, as my GE and later my sugeon insisted it was a lipoma - this after I expressed concern it was a lumbar hernia (believe this is the more modern term for episacral limpoma as the newer research uses the lumbar hernia term, old research the epsacral lipoma). The surgeon agreed to remove the "lipoma" - and found it was indeed a lumbar hernia after all! I was very lucky, as there are cases in some of the literature (found on line) where surgeons treat them as a lipoma - I guess easy to do if only 'fat tissue' breaks through. I could tell the hernia was repaired when I walked out of the hospital, and it's been three weeks and Ive been pain free (except the incision - but that's to be expected).
  So shelly, I'd like to add to your good advice about never giving up to also not initimidated by the doctors and surgeons if their diagnosis does not make sense. Although they are the specialists, sometimes we patients need to educate them :)

[shellywelly18]

did the ones that were we removed in your back help the pain? dont ever give up , please dont give up you must keep searching

[shellywelly18]

i really hope you get this !!! i was wondering if you could give me the information about the surgeon who took offf the lipoma for you? i am having the same problem and nothing has worked and all the tests are negative

[shellywelly18]

i need to know if the surgery worked for u ? did it take away your pain, can i please have the name and number to the guy in UTAH that helped you ? i am desperate, been in pain for 7.5 months, MRI neg, x rays neg, nothing helps done it all , md does not believe me that its this lump and all the pain surrounds it , i really hope you get this ....

[mya483]

I had four lypomas in my lower back, they were symetrical to each other.  The surgeon removed two of them that caused me the most pain...A year later I found 2 more in my upper neck..  The surgeons want to remove them, but after the last surgery im not too sure.  I was out for 2 months since the lypomas connected to my pelvic bone.  But it seems like no one can help me manage the pain..  I dont know what to do anymore and im giving up..

[lindylou11]

Are you doing better now?  I live in Provo, and may have something similar.

[donna923]

hi, i think i have the same thing. i have constant back pain that radiates down my butt to my legs and is putting pressure on my bladder for some reason (i am always running to the bathroom). the dr injected the site but that gave relief for a day.

how did the surgery work? was it bad - was your recovery time long? i am so nervous

[lipomaman]

I'm going to a plastic surgeon that I had to go through. These doctors are just ignorant of the fact that these things can cause severe pain by herniating and it can affect the whole body by crushing or trapping nerves. These are almost always caused by some trauma event and sometimes grow into the nerve causing fibrosis which can be very painful. I'm having outpatient surgery and currently have no insurance and had to come up with 3300 dollars because of outpatient discount without insurance. I'm sure there are many people who are having undiagnosed back pain and this is the cause because 50% of population have lipomas. The ones who have them and have certain accidents are highly succeptible to this injury. You can use a plastic surgeon with insurance if it is not cosmetic. Keep calling around and you will eventually find one who will do this for you. They will call it exploratory with possible mass removal. Hang in there and just bulldog them into doing it. If you have to you can sue your docs since

[Leedogg]

Hey guys.  I just wanted to update this thread.  I had an MRI done last month and it turns out I've had a herniated disc at the L5-S1 vertebrae.  The knot is scar tissue or something else.  I'm going in for cortizone shots next month.  Wish me luck!

[Moreland01]

I noticed they wouldn't let me put my email so use my username plus gmail *******.  Okay!  Thanks,  Robbbie

[Moreland01]

I had an episacral lipoma removed today from my lower left back (44 yr old female).  It had been bothering me for a year.  I wanted to rip it out with my fingernails, it hurt so bad.  Anyway, it was about 1.5" long and 1/2" wide and 1" deep.  I have it at home so I can take a picture for anyone who might be interested.  I had a Plastic Surgeon do the surgery.  It took 30 minutes and I had conscious sedation and talked thru the whole thing.  No big deal.  He charged me $1200 total (sedation, surgery center, his fee) up in Park City, UT.  I don't have insurance.   No boob jobs going on these days so they're dying for work, I supppose!   Anyway,  if you want, email me any time and I'll let you know if it cured my back.  Probably take 3 or 4 days from today before I can tell if it worked. My email is ***@****.

[craxley]

I have had a similar experience as you two describe, years of back pain that failed to respond to conservative treatment (physical therapy, medication, etc) and the same dismissal by my PCP and orthopedic doc when I told them the pain originated from the lumps in my back.  I finally found a pain managment specialist who would listen to me and she said she has seen this many times. It was a great relief to have someone listen to me and not act like I'm crazy. She injected around the lipomas with anesthetic and it gave temporary relief so she referred me to a surgeon and I am scheduled for removal of the lipomas in October. Hope it works!

[Leedogg]

Unfortunately it's still there...  I had a physical done back in June and mentioned it to my doctor and told him what I thought it was.  He told me it was just in the muscle and gave me some back exercises to do.

I shouldn't have let him give me that answer.. So it's partly my fault..  Sometimes you just gotta grab your quack by the head and make them listen.  I'll be scheduling an appointment with a specialist this fall as I've endured this unnecessarily for too long now.  Good luck with getting a doctor to listen to you.

[sofa weight]

were you able to get the episacral lipoma removed? I ahve been having leg pain and lower back pain for over a year now and haven't been able to work for about 8 months and i keep trying to get my multiple doctors to consider that the lipomas are the source of the pain, but they won't listen to me or even look at the lipomas. I want more than anything to get a doctor to listen to me and to get someone to remove them. So, I am wondering if you had any luck with it.