Originally Posted by reebee

Hi, I was diagnosed in 2011 while being treated for cancer. The chemo made the TC worse even though I had been having issues for years, I didn't know what it was until having a CT for the cancer.

I have seen a few NS the most recent today. He was very nice but said that TCs aren't usually symptomatic and began talking about a plan for physical therapy and steroids for a disc issue seemingly unrelated to TC.

It's so frustrating to know more than the doctors about TCs and try to tell them and they seem to not get it.

The first NS I went to yelled at me "What do you want me to do about it? It's full of spinal fluid and blood vessels!"

I had another MRI done last week and now am scheduled for another two next week. I insisted that it be done because I can tell there are more issues. I know I get fluid imbalances and fear leaks because of the headaches.

I found out that the pain in the middle of my back is another TC and the one in my sacral area is now over seven centimeters. That is a HUGE cyst and I think it scares the doctors and that's why they seem to want to avoid it.

To be told that I'm not having symptoms when I have had so many and some severe and terrifying is maddening.

Thanks for listening.