Tailbone pain caused by rare tumor called chordoma

Nicki B. - tucker1@zoominternet.net

I remember almost specifically when my tailbone pain started - October of 2000. I just assumed it was because I was sitting so much - I am a medical transcriptionist - and the chairs at the hospital were *garbage*. But, I had a good chair at home and worked as much at home as I did at the hospital. Finally, in January of 2001 I quit the hospital and started working from home only. I started seriously trying to resolve my tailbone pain in January of 2002. I tried chiropractic, anti-inflammatory medication, manipulation and even a Cortisone shot in September of 2002. Nothing helped. I was about to press for the dynamic x-rays, since the plain x-rays showed nothing out of the ordinary, but I decided to ask my orthopaedic surgeon to do an MRI. He did not hesitate and said that if I wanted an MRI we would get one. I told him that since both of my parents died from cancer, a tumor or cyst was a concern and I would just feel better. He was in full agreement. Out of curiosity I also asked him what, realistically, were my *chances* of having a tumor in that area . . . . he said about 1%.

Well, it turns out that is exactly what my problem was, but not the usual tumors and cysts you read about (not a Tarlov's cyst). What was causing my coccydynia was a tumor known as a chordoma, which is EXTREMELY RARE. In a nutshell, when we are all embryos we are formed with two spinal cords. The one in the front generally disintegrates and we are left with what becomes our spine. Mine did not disintegrate. Chordomas are basically "embryonic notochord remnants". The statistic I read is that 0.2 per million of these occur - VERY RARE. I was very lucky though, because some people develop these tumors in their brain and there is basically no help for them.

I had my tumor and my coccyx removed on December 17th 2002. The tumor was about the size of a plum, 6.5 cm x 6.5 cm. Although it is not "malignant" per se, it is also not "benign" either. I never knew there was a gray area on this subject, but apparently there is. The good news is my surgeon got the entire tumor with clean margins - and it had not yet started to destroy bone. He only had to take my tailbone. There was concern he might have had to go further up the spine, which would cause permanent lifechanging complications. Thank the good Lord he did not have to do that. My recovery has been incredible! I went back to work - sitting - on Monday, the 6th. Actually sitting at my PC is not bad at all. Sitting in my car, Lazy-Boy and church pews is still painful, but I do believe it is getting better. My incision is in an "unusual" place, if you know what I mean. There were about 20 stitches in all, and from what my hubby tells me the incision is about 6-7" long. The bad news - these tumors statistically do return, I was told probably in about 5 years or so. I know my doctor will keep a close eye on me, in hopes that we can catch this very early if it recurs. He said it will come back right where it originally was, but since there is no coccyx to attach to, it will go to the next vertebra.

You have no idea how grateful I am that this is, for the most part, behind me now. If the tumor grows back, I will deal with it. I cannot stop it, and no amount of "good living" will have an impact on this thing. My sincerest sympathies go out to anyone who suffers from this pain because it is extremely annoying at the very least. I wanted to let you know my outcome just in case it might help someone out there who is frustrated. Like I said, I was about to press for the dynamic x-rays, but decided to ask for the MRI first - - - I STRONGLY URGE ANYONE WITH THIS PAIN TO DEMAND AN MRI! It may save your life!

Feel free to email me with any questions - please put "tailbone pain" in the subject.

Sincerely,

Nicki B

Updated 2003-01-19

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