Coccyx pain and tumour

Tami Ross, tross@rdg.boehringer-ingelheim.com

I have had pain in my coccyx for the past 18 months, and I believe it is due to childbirth. I have been to a chiropractor, done physical therapy (which only made it worse) and now am going to a pain center. They are going to try the semi-permanent nerve blocks as soon as they can get the procedure approved by my insurance company. I am desperately looking forward to relief. I have severe pain when I sit and when I sleep at night, but the pain never completely goes away.

Update, 1999 September 22.

I have had coccydynia for about 20 months now. I have tried the first step of a caudal block (the nerves on the top of the coccyx), but that did not relieve all the pain. I also had a shot of cortisone which did not provide ANY relief (actually made it worse). On Friday I am going to go for a second caudal block. This time they are going to try injecting both sets of nerves to see if that helps at all. I have also tried two medications to help me sleep at night, Ultram (which made me sick and feel like I had a hangover) and Vicoprofin (which made me feel like I was flying and completely out of contro). I am now going to ask for something else since neither of those medications worked appropriately. I have an appointment with a orthopedic surgeon today. He is going to set up an MRI just to make sure that nothing else besides the coccyx is causing the problem.

I am working with a pain center called The Comprehensive Pain & Headache Treatment Centers, LLC. They are located at Griffin Hospital in Derby, Connecticut. They are working with me but are slow at getting treatments scheduled.

Update: 1999 October 19

I just wanted to provide an update on my coccygeal pain. I went to an orthopedic doctor who told me I would have to live with the pain for the rest of my life. But, he did decide to send me to get an MRI just to make sure that the pain is not being caused by anything else. When I went to have the MRI the radiologist reading the films had me immediately go to get a CaT scan done.

They found a tumor on the S4 bone of the sacrum. It is 2.3 cm x 2.0 cm x 1.8 cm. So now I am going to have a biopsy done to determine if this is benign or malignant. I had x-rays done in April (6 months ago) that did not show any sign of this tumor. I am glad that I persisted by going from doctor to doctor until I found someone who took me seriously enough to have additional testing done.

My advice to everyone is that if you have pain for any length of time, get it checked out. I am sure that most everyone's coccydynia is NOT due to a tumor since it is very rare, but it is nice to be on the safe side. I wish everyone the best in their quest for a pain-free life!

Reply from Jon Miles:

Hi Tami, I'm so sorry to hear your news about the tumour. I do hope it's benign. It's a warning to everyone to make sure they push for the proper tests. Do let me know how you get on. Everyone will be wishing you well. I wish you good luck with all my heart. Jon

Update from Tami, January 18:

I just thought I would update you on my progress. I had surgery on November 23rd. They found the tumor was on my 4th sacrum (S4) which is right above the coccyx. Since the sacrum and coccyx are so close in relation to one another, it is difficult to tell if the pain was coming from one or the other. The doctors removed my sacrum from the S4 down and also removed my coccyx. Since the surgery, pain has decreased drastically. While I still have to take regular pain medications, the pain has decreased by more than 50%.

Unfortunately my tumor is malignant and was diagnosed as osteosarcoma. Osteosarcoma is generally known as a children's cancer or a cancer of the elderly. Since I am 29, and the tumor was not found in an extremity (arm or leg) my case is VERY RARE. I have now started chemotherapy but and doing well.

I just wanted to state that again, my case is rare, but it never hurts to convince your doctors to have an MRI just to rule out something like this if you have had pain for any length of time.

I wish everyone the best of luck finding relief for their pain. Please just remember along the road to a pain free life to take a look not only at the symptom of pain but try to determine the cause of that pain if at all possible!

Updated 1999-07-20

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