Frustrated with testing

Anne - ann8919@hotmail.com

Original posting 2002-12-08:

I have been hanging out here for at least a month now as I continue to suffer from coccydynia like all the rest of you. I actually started out hanging out at the www.pilonidal.org site because when all of this started I wondered if I had a recurrence of a pilonidal cyst which I had had 4 surgeries for when I was a teenager (I'm now 36). I got the link to this site from there.

Anyhow, my pain started very insidiously, just ached with prolonged sitting and then with getting up from sitting. It has gotten to the point that it is really hurting the most when I get up from sitting. I have to be careful how I sit down although because I feel this wierd pressure-type sensation and pain. I do not really have a lot of pain while I am sitting unless it is for a long time like more than an hour at a time. It even hurts to tighten my gluteals.

I have been evaluated for a pilonidal cyst which I do not have. I have been treated for cellulitis of the sacrum with no relief. I have seen a surgeon who could only find a split in my old pilonidal scar which healed up with some cream after 2 weeks. Still no relief from the tailbone pain. I have had a CT of the pelvis which only showed chronic inflammation around the coccyx. I have had x-rays ( I tried to get a dynamic x-ray done to no avail) which were normal. I am now waiting on an appointment with an orthopedist that is scheduled for February with the probability of corticosteroids injections into the coccyx. I have been on NSAIDS and Ultracet for pain, not to mention some homeopathic treatments, with no significant long term relief.

The weird thing about all of this is that every once in a while the pain will disappear suddenly and completely for a few minutes or sometimes for several hours or even a whole day only to return again just as severe as before. I really think I have a dislocating coccyx, that seems to make the most sense to me. I also have fibromyalgia which sometimes has caused me to question my own perception of all of this, but it has been too persistent and too localized to be solely from that not to mention that fibromyalgia does not cause inflammation which the CT did show.

So.............that is where I am at. Anyone else out there sound like this? Any info and or support would be greatly appreciated.

Thanks Anne

Reply from Bonnie, BonBillNethers@aol.com, 2002-12-15:

I am responding to Anne who says she is frustrated with testing. I feel the same way. I have had pain with my tailbone since last April. I have had x-rays and recently had an MRI done. Both test results say everything is normal. Now my question is what is causing the pain?

I guess my answer to Anne is yes I have had the same things happen to me and I really don't know where to go from here. I know it isn't in my head.

It hurts to do any housework such as vacuum. I went bowling yesterday with my grandchildren and today it has made me hurt worse. Where do you go after you have had an MRI done?

Thanks for any advice. Bonnie

Update from Ann, 2003-04-06:

It has been 4 months since I originally posted but I do have some news to report. I saw an orthopedist in early March. He was concerned about the fact that I had "nonspecific inflammation" around the coccyx on a CT I had done in Oct 2002. So he wanted to get a MRI to make sure there was not any underlying infection going on. Then the next step he said was to try a caudal block with steroids. So I did the MRI, which of course was normal, and I had the steroid injection this past Monday. It was suppose to be a caudal epidural, but my anesthesiologist wanted to get the injection between the coccyx and sacrum since my pain seemed very much coccyx related. He was also concerned that the caudal may be hard to get in easily due to my history of pilonidal disease and potential scar tissue there. Anyhow, the steroid injection into the joint went much easier than I thought it would. The worst part was the local anesthetic and the injection seemed to cause a muscle in my left gluteal to spasm briefly, but considering how bad I had it worked up to be in my mind....it was a breeze. I was basically pain free when I left the surgical facility, took a whole 10-15 min.

I was sore later that night and the next day, but the actual pain the coccyx that I have been dealing with for 6 months was gone. No pain with getting up from standing. I still have a little achiness with prolonged sitting. I would say my pain is probably 95% better right now. So wish me luck that I am on the mend now!! They have warned me that of course I may need more injections, so I am prepared for that, but for now I am going to enjoy the pain free moments!!

Note from Jon Miles:

The standard x-rays and MRI scans usually show nothing when done on people with coccyx pain. But there are useful tests that can help to indicate the source of the pain - see Investigations.

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