Coccyx birth defect

Kirk, USA

Posted 2015-04-12

Between 2002 and 2012 I had lower back and right hip pain that gradually became worse with each passing year, it was so bad at times I thought I would pass out.

In 2012 I decided I had to see my doctor about it. I was in the Southern California Kaiser Permenente health insurance/healthcare system. My personal physician sent me to a back specialist in February of 2013. Because of ulcers and a weak stomach lining from taking ibuprofen for years, I could no longer take ibuprofen and was started on Vicodin and sent to physical therapy. The PT had no effect so they passed me up to spinal specialist. After MRIs they sent me up to a spinal surgeon. I had spondylolithesis, my spine was separating at the L5 S1 section. A Cscan two days before fusion found I had a birth defect, the separation was caused by the fact that I was born without the top of my coccyx and my spine and tailbone have never been connected, held in place by muscles that could no longer hold them together. The fusion was a success. The use of my legs, which were in jeopardy, was saved. The pain in my lower back was gone, replaced by much worse pain radiating out from my now connected coccyx over my pelvis and down my right leg to 1/3 of the way down my calf.

I was sent to pain management were I was given 21 injections with a fluoroscope into my spine and coccyx. Those shots were nearly as painful as when the took me off the IV painkillers after the surgery. None of them did any good and I was now on morphine and Vicodin.

Given no hope by the Kaiser doctors, my wife and I decided to move to Minnesota to see if the Mayo Clinic could help.

At the Mayo Clinic I was sent to PT, all kinds of PT including interior PT. Off to Pain Management. They then decided to try the spinal/coccyx shots which had no effect. An electronic stimulator was implanted and I got relief for ten days. The pain returned and after five visits and as many attempts at reprogramming was tried. No help. Pain Management has determined my original relief was due to a strong placebo effect. They then gave up, informing me they could do no more.

So I am still on Vicodin and morphine prescribed by the first small town doctor who saw me on my first arrival to Minnesota as no other doctors in the Mayo Clinic system wanted the responsibility as the fear I will take my own life and don't want the inevitable lawsuits. I must lie on my bed constantly to get even a tiny amount of relief as sitting, standing or walking makes the pain much worse after as little as five minutes and I am in tears.

Of course SSD has twice denied me as I received ten days of relief over a year ago and I will not get a hearing with my lawyer for another seven to eleven months. I have developed a shaking leg in reaction to the pain. I cannot sleep until I am exhausted. My doctor is going to refer me to The University Of Minnesota Spine Center in the hopes that they may come up with something.

Note from Jon Miles:

I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.

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