Lumbar epidurals no help

Barbara -

Posted 2010-01-17

Approximately 18 months ago, I literally woke up one morning with horrible coccyx pain. It was not gradual, I did not fall, literally, no explanation for why I was experiencing this pain. After about a week of thinking it would just "go away", I made an appointment with my PCP and she (and I both, initially) thought it was a pilonidal cyst. She tried to lance it, to no avail, told me to continue with the anti-inflammatories, gave me an antibiotic and to call her in a week. I took all of the antibiotics, kept taking the anti-inflammatories, etc and had no relief whatsoever.

I went back to my PCP who was baffled to say the least and referred me to a general surgeon who specializes in GI issues as well as pilonidal cysts. He examined me and came to the conclusion (which I had already come to) that it was not a cyst and referred me to an orthopedic surgeon. I went into see him, he told me (with no x-ray, MRI, etc., an exam only) that I had coccydynia and that I needed to have my tailbone removed.

This ortho that I saw was retiring in a month and told me he could not do the surgery but he would have me see one of his associates. I saw the next ortho who told me "no, that's not what it is and I think you have herniated discs" L-S spine x-ray and lumbar MRI later, sure enough, disc herniation at l4-l5. Because I have scoliosis as well, this surgeon does NOT want to do surgery on my curved spine, would rather I go to the pain clinic for a lumbar epidural.

So, one year ago next month, I have had about 6 lumbar epidurals, one radio frequency ablation, 2 sacro-iliac injections and as of today, one ganglion block. The anesthesiologist is baffled and cannot figure out why, if I have this disc herniation, my only pain is in my tailbone and relatively little pain elsewhere, nothing typical of a disc herniation at L4-L5. The anesthesiologist wants to refer me back to the surgeon, however, I have made it clear to him that the surgeon doesn't want to operate and I'm not so sure I want surgery either.

I'm at a loss for what to do next and/or who to believe as far as what should be done. The only one I trust lately is the anesthesiologist, he's the only one who seems to have a clue as to what's going on. At one point, he thought I might have bone cancer because my bone pain was so localized and made no sense whatsoever. I do have chronic lymphocyctic leukemia as well but it is at a stage zero and is an extremely slow moving leukemia, my oncologist does not believe it has anything to do with my back pain. I definitely agree with him as I have no other symptoms except for a high white count... no fatigue, no lymph node involvement, etc. This is extremely frustrating... I hate to say this but it does feel good to know I'm not alone!

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