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Poorly understood - coccyx luxation

AnonymousUserAAnonymousUser Posts: 49,662
edited 06/11/2012 - 8:37 AM in New Member Introductions
Hi yall,

I'm so glad I found this website! Three years ago, I was about 4 months pregnant, and my sciatic nerve on the right started bothering me. PT made it worse, and soon I could hear clicking and popping. Since that time I've had severe coccyx pain.

The labrum in my right hip was torn, and I have calisified cartilege in my hip joint; however, a cortisone shot given in March 2009 has taken that pain right now. I can still hear it pop and click, but it's more like a pressure release than actual pain.

After being misdiagnosed for months, I finally learned last month that my coccyx luxates (or moves back and up) into my saccrum when I sit down or stand up. This is a severe click/pop - probably a 9 or 10 on a scale of 1-10 - brings tears to my eyes and takes my breath every time. On a normal day my pain-in-the-butt starts about 20-45 minutes after I wake - usually around a 4-5; then after I drive or ride to work for an hour, my pain level will usually stay at about a 7-8, until I get home and take my pain medicine, of course, it makes me sleepy, so I can't take it until the baby is in bed. Usually I go to bed at 8 when he does.

We haven't been able to locate a coccgectomy specialist in my state - trying to get my insurance to pre-approve out-of-state physician in LA.

My husband tries very hard to understand, but I can get moody and irrational sometimes. The rest of my family doesn't understand chronic pain - they just can't 'see' anything wrong with me, and I don't whine about it all the time - after months of being told this severe pain was in my head, I'm having a hard time expressing emotion - unless I'm alone or with my husband - he's my rock!

I'm normally a very happy, energetic person. This has affected every aspect of my life, and I'm not the mother, wife, sister, daughter or friend that I was before this pain came into our lives. My pain limits EVERYthing we do.

My pain mangement doc told me he was 'afraid' it would come to this (having my tailbone removed); I told him, 'hey, don't be sad - I've had this pain in my butt for three years - it's my number one enemy - I'll be happy when it's gone.'

Sorry this is so long, I'm just so glad that there are people out there who understand and don't think I'm werid or looking for narcotics or a hypo-chondriac. It's just been a really long three years. . .


  • Thanks Eve for responding. :-)

    Three long years to a DX - this problem was diagnosed as everything from fibromyalgia and depression, to referred hip pain and tarlov cysts (which I do have but they are less than 1 cm, top of sacrum). Done numerous neuro test due to numbness, tingling and weakness on my right side. Looks like my muscles are just tired on that side of my body.

    My doc did sit xrays - I sat on a chair and leaned forward for the first shot - shows a gap in the joint between my coccyx and sacrum. Then I leaned back until I couldn't stand it, that xray shows my coccyx bone rubbing against the sacrum bone - bone on bone - OOOOOOUCH!
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can.you have come to the right place to get a group of understanding and caring spineys.. :X i do hope you find pain relief soon.. :D good luck and keep us informed. Jenny :)
  • I can tell from reading your post that you have really been down that loooooong road that many of us here have. I am glad that you have found us as you will find much understanding and support here. Good luck and please keep us posted.
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