CCI and sacrum/coccyx pain

[lasel22]

Hi everyone. Just wondering if anyone out there has had intense lower back pain from craniocervical instability.  I get terrible pain in the sacrum/tailbone area when I do too much or if i go from sitting to standing, the pain isn't immediate, it coincides with when I feel an increase in pressure in my head, then gradually goes away as the head rush from standing up subsides. Hope that makes sense. I'm scheduled for fusion surgery and just hope this goes away and doesn't have something to do with tethered cord, which I'm not sure i have. I don't have any shooting pain in legs or incontinence or urgency or anything like that.  Just wondering if anyone has any experience with this. Thanks.

[lasel22]

Thanks for your reply, Selma. My NS knows about the tailbone pain, and he did ask me a bunch of other questions that I believe were geared toward whether or not the tailbone pain could be coming from a tethered cord and my answers were all no.  I don't have much lower back pain, only the si joint on the right side. This tailbone pain is horrible though, when i have it. It isnt always, more so after a busy day with a lot activity, like taking my kids shopping, that kind of thing. My NS did ask how my back and tailbone felt in traction. My back felt better and the traction didn't cause any tailbone pain to occur, so I guess that's a good thing.  I'm just afraid I'm going to wake up from CCI surgery and have tethered cord problems! I'm just scared, that's all. I'm a bit of a control freak too. Sometimes i just have to let go and let the specialist know what's best.

[selmaS]

LOL...I know what you mean....I too am  guilty of being a control freak at times when I regards my health or that of a loved one....My tail pain started when I tried to do pilates.....I heard a pop sound and what my Dr told me was the cyst that causes the TC ruptured.....and it took some time before I could walk without that pain....
I never had traction....glad it helped you.You were decompressed already...right? I was told if I was going to have an adverse affect due to the surgery I would have it in the first 6 weeks....OR I may have a slower effect and that could be up to 6 years....well I surpassed both time lines and still have not had those issues and put off the TC release surgery.....

[selmaS]

Hi I too get the tail bone pain, but I do have TCS.....and I have CCI as well....so no help here....I also do not have incontinence  or pain shooting in my legs.....mostly lower back and tail bone pain.....and it is not associated  with any pressure that I may have in my head..Let me know what you find out.