Hello!
Hi Everyone! I am happy we have another place to share our experiences with each other. I know lumbar chordomas are rare. If anyone wants to talk, I am here.
I had a lumbar chordoma removed in Sept. 2009 and Proton Beam in Summer of 2010. All has been good. November 2010 I started to decrease my pain meds and started having horrendous pain in my left pelvis/leg. I finally got off the narcotic but still have pain. At my last visit, I was told I needed to have surgery to replace a loose screw in my left pelvis.(this is most likely causing my pain). And while I am there, I will be having all of the hardware replaced T10-pelvis, a few extra screws added and alittle more bone graft.
I was surprised when I was told I had to have the hardware replaced. It's been almost two years since my surgery and I am finally starting to feel "normal". I did do some research and found that there was a study performed on hardware failure. The average is about 4 years for my type of surgery. So this is a good thing- being proactive and getting new hardware.
I will be at JHH on Aug 30 for surgery.
I will keep everyone updated!
Mary
Extra-Axial Chordoma
Mary, I read your post and lumbar chordomas are rare. My husband has one that is even more rare. His is extra-axial chordoma...(in his tibia). I have yet to meet anyone else with it, so it is hard to compare what he has gone through with someone. I'm sure you are in the same situation. Originally he was diagnosed 10 years ago with chondrosarcoma, and after several recurrences it was then diagnosed as dedifferentiated chondrosarcoma and after the last recurrence in 2010 it was completely changed to dedifferentiated chordoma. He had to have his leg amputated 6 weeks ago. Now he is in the process of healing so he can get fitted for a prosthesis.
His original leg surgery was limb-sparing surgery, so he had bone and knee replacement. His knee had to have parts replaced after 5 years. He is way to physical for it to last any longer. He was probably going to have to get it done again within the next year or so, but not anymore.
Keep us updated on your recovery. I hope all goes well with your surgery.
Sylvia