Benign ependymoma was the cause of the pain


Posted 2005-12-11

I have been in constant pain for a little over a year now. The pain is the tailbone region and I believe it is do to the coccyx or nerves around that area. This site has been very helpful for me to understand that I am not alone in this situation. The pain is with me all day, everyday. It is hard to sit, stand, walk, lay down, basically nothing I do makes me comfortable.

I had my issue probably for 2-3 years... but being really bad for the last year. As many of you already know, this is a painful and damn right annoying issue that can affect your life in so many ways. I tried everything from tons of pain meds, CAT scan, bone scan, blood work, stretching, basically everything you can imagine.

I live in Canada and recently had to go to California for business. I knew it was gonna be a hard trip due to my discomfort but it had to be done. I made it to California and was feeling the same as usual for the first day or so then my legs started becoming very weak and kinda numb like....I gave it a few days as I thought it was just some kind of flareup. I was unable to sleep or eat for those couple of days and mainly worked from the hotel.

Finally, I bit the bullet and went to a great hospital in San Jose. I was a bit worried as I did not really know how the United States health care system worked but it was not bad at all. Thankfully, I had coverage when travelling. I checked into the emergency room...waited about 20 mins in the waiting room and was checked into a bed for the nurses to attend to me. They gave me a couple of shots for pain and then the doctor ordered an MRI scan. This was the only major scan I had not had. Anyone from Canada reading this knows how hard it is to get an MRI in this country...even if they order one for you usually you will wait for 1 year to get in. So they did the MRI scan in San Jose a couple hours after I checked in, and they discovered the problem. A neurosurgeon further explained to me that there was a significant mass or tumor between my sacrum and tailbone. Surgery was required immediately so I caught the next plane back to Canada and was admitted to the hospital. Further MRIs were done over the next few days and then the surgeons operated on the tumor. There were numerous nerves entangled throughout the tumor; this had been causing my leg weakness, tingling and overall pain in that area. The doctor confirmed that the tumor was EPENDYMOMA which accounts for about 1% of all back pain. They were able to scrape the nerves and remove 99% of the tumor cells. In the near future I may need to undergo radiation to slow the growth of the remaining cells as they will always remain. This is a benign tumor and the cause is unknown at this point.

I wanted to share this experience to make everyone aware of this condition, especially those in Canada. Please insist that your doctor order an MRI as it is the only test that will show this. Private clinics are available too, at the cost of around $800. I am finally on the mend and hopefully my chronic pain will subside and I will be able to regain a normal way of life. Good luck to everyone and thank you for providing this site. It was a great help when all other resources were not working.

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map