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Spinal Stenois - Spinal Extradural lipomatosis

LydetteLLydette Posts: 1
edited 10/21/2014 - 4:21 PM in New Member Introductions
Hi All!

I have been watching this forum for quite awhile but didn't feel like I could participate, for a variety of reasons. Anyway, I have a number of issues with my spine...the whole 9 yards..from the top of the tower to the bottom of the well! :-) Meaning C1 down to the S range. I act caviler about it, like so many of us do. We try to hold onto so much of our lives and try to keep the frustration and anger at bay. Sometimes it seems like a losing battle. Fortunately or not I am a blind-sided optimist so I try to think positively about everything but I have to admit, some days it doesn't seem to be worth the effort.

Recently I was diagnosed with Spinal Extradural Lipomatosis. I was thrilled that I finally had a diagnosis to my excruciating pain that got worse, never better and totally unaffected by massive amounts of pain killers. I have other issues, as mentioned, but the symptoms of this disorder were bar none, the worst. My only concern now is that I see no other option but surgery to give me a chance at a fairly normal life but I can't seem to find any solid research or surgical info on the disease and surgical outcomes. I've searched the net ad nauseum but there is very little to be found.

Supposedly my situation with (SEL) is fairly severe. The surgery, like any lumbar spinal surgery, can create pretty serious complications. I guess I would be less nervous or cautious if there more data on the disorder (hey guys, is this a disease, disorder or just pain in the butt...HAHAHA), no seriously, I would feel more comfortable going to surgery. Anybody have any clues?

I am scared. I am tired. I am in a lot of pain. I am glad to have found a community who I can learn from and maybe, just maybe, help me to find a little peace.

Thanks for listening,


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