Epidural Lipomatosis

Posted by rockforddom @rockforddom, Feb 26 12:27am

Three years ago, I had an Abdominal Aortic Aneurysm where they replaced 12” of my aorta with Dacron. My body didn’t accept the graft well and months later was still inflamed. I was sent to a Rheumatologist to treat the inflammation, who prescribed high doses of steroids (prednisone) for over a year. This led to huge weight gain (85 lbs) and other problems. However, the worst side effect was the development of Epidural Lipomatosis. Basically, lipomas have formed inside my spinal column and are causing stenosis. I cannot walk more than 150 yards, I can’t stand for more than 10 minutes, even sitting for more than a couple hours is difficult … and I’ve been unable to work for the last 2 years.

I’ve seen 4 neurosurgeons, including the heads of Neurosurgery at two hospitals. None of the are willling to address my situation. However, none of them have the resources of Mayo. I live in Rockford, IL so it’s problematic for me to travel that distance.

Is this something that this forum discusses?

I’m interested in those who have experience with some of the computer assist procedures, perhaps in conjunction with some sort of precision liposuction. Any insights would be helpful.

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?)

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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/

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