Epidural Lipomatosis

Hello @rockforddom and welcome to Mayo Connect,

I am sorry to hear about your problems that resulted from the Dacron. If you can only walk short distances, this really impacts your life. I appreciate the fact that you have been advocating on your behalf and trying to find a solution to your problem. While I have never had this problem, I hope that others in the Connect community will join in this discussion.

Have you contacted Mayo to see if they can be of help? Here is information on calling Mayo to make an appointment. https://www.mayoclinic.org/appointments. The person who answers the phone may be able to assist you with knowing if they have a specialist for your particular problem.

I would also like to invite some members of Connect who have had spinal surgery, autoimmune disorders and/or rheumatological problems, @jenniferhunter, @becsbuddy and @johnbishop

@rockforddom, Do you have anyone who could help you make the trip to Mayo? (I suppose I'm thinking of someone who could drive you and let you lay down in the back of a car or SUV?)

Hello @rockforddom, I would like to add my welcome along with @hopeful33250 and other members. I have taken prednisone for two occurrences of poymyalgia rheumatica (PMR) and can relate to the weight gain problems associated with prednisone. I have no experience with Epidural Lipomatosis but I'm wondering if the weight gain maybe responsible. I did find some information that may be helpful.

Epidural lipomatosis: A dilemma in interventional pain management for the use of epidural Steroids
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3788255/

I too, suffer from Epidural Lipomatosis, mainly due to my family's propensity for Lipoma formation. Over 90% of my stenosis is due to this situation and a thickening of the ligamentum flavum. I too, would like to find a specialist in liposuction that could address this condition without the need for a drastic laminectomy and fusion. Any specialists at Mayo with the skills for a minimally invasive liposuction at L4 & L5?

Me too,

And it (also) began with a diagnosis of Polymyalgia Rheumatica and high doses of Prednisone. Along with 90 lbs of weight gained. That was 9 years ago. I've only lost 30 lbs of that, but 20 lbs of that in the last year. However, Pain Management here put in little shots of steroids all up and down my spine back in 2017. Lately, more shots into my right foot, which now has had surgery to correct the problem there. Then after the MRI came back with determinations of "prominent epidural fat" in multiple locations in my spine, that same doctor didn't tell me about it, and then put in more epidural steroids at L5. I'm not sure that was the best way to go. He's also diagnosed me with CFS. As well as, he mistakenly punctured my lumbar there, with the resulting loss of some cerebral spinal fluid. Then, they all sent me home to have the "really bad headache" they told me I'd have, with no pain meds at all. That hospital's On Call Physician totally ignored my calls (all spaced 30 minutes apart). Brings the old saying "You can't fly with eagles, when you work with turkeys," to mind.

My point is, I don't have a record of ever having sought out opioids, or of misusing the ones (like for surgery) prescribed. So, I fired him (from my case). When his hospital's Quality & Safety insulted me as their response to me reporting that whole team, I just quit reporting to them, which I believe was their goal, but it works for me too. Life is too short. It's not my job to fix their messes. It was only after all of that, that I discovered "epidural fat" had been found, in multiple places in the lumbar spine, and L/S. His MRI also discovered avascular necrosis on the right femoral head. So, now, I gotta get someone (my PCP most likely) to MRI the C spine and T spine, since he failed to order those also, in the first place. Along with a separate CT or MRI of the hips.

I know I need to lose weight, working on it, no thanks to them. About 2 years ago I tried their Weight Loss Clinic, and when I discovered major fraud in it, I quit. So that clinic circled their wagons, and lied, fabricated medical records and supposed calls and return calls to me. I literally was sitting at home, in front of my phone, when their Director or her Office sly-dialed straight to my voice mail, instead. I can't work with people like that, and expending the 10 calories it would take to do so, is something I feel morally obligated not to do. I don't care who they are.

There may be something to this business of steroid injections on overweight people like us. Yet, the truth is, before the PMR diagnosis and Prednisone, I was maybe 20-30 lbs over optimal weight, for a Senior woman. I not only wasn't obese back then, I never had been. So, that would make a good study for someone at someplace like The Mayo Clinic to do. I have recently totaled up having lost 10% of my body weight, and that's supposed to help my heart, blood sugar, and blood pressure, the most. It's a start, but it's a good start.

The information I've found online tells me losing weight helps with the problems we face having fat in our spines. Liposuction in and around the spine sure sounds like a good plan too. I intend to search out the best neurosurgeons I can find here, for just such an option. I have a good foot surgeon and a good relationship with him. Also an ENT who does great nose work. Asking local surgeons about other surgeons seems to me the best way to go for now. For those of us who are praying people, this seems a good time to hand it on over to Him.

God bless.

Hi, I am newly diagnosis (via MRI, finally) of this epidural lipomatosis in my lumbar spine. I'm gonna insist on MRI's of my C spine, and hopefully they do my T spine also.
I also have (in remission since 2016) PMR and gained 90 lbs during my Prednisone treatment of that. No one even told me weight gain was a normal risk with Prednisone, it was my first time on it.

Anyway, on that study you've referenced for epidural lipomatosis, I was just reading it earlier today, already. It does say in there that obesity was found to be the cause of epidural fat, aka lipomatosis, in 25% of cases. So, that's not just some weight gain, obesity is a set amount over over-weight. There's a grey area of 17% with no known causation. Still, that leaves excess weight as not the major cause. Though in my case, I do think the 90 lbs extra did cause it. I got my referral in to Neurosurgeons, yesterday. Reading the rest of my MRI it appears I've been highly lucky to not have paralysis anywhere yet. So, keeping good thoughts about it, and I have lost 30 lbs of the 90 so far, better than a kick in the pants as Grandma would have said.