I am wondering if there may be anyone who has a similar or the same condition as I have on this site. I have a, well what I have been told is a rare condition so let me explain.
12 years ago I had a problem with my shoulder & a slight lump came up, after many visits to the Hospital with lots of scans all different. I was told that I had a tumor on the side of my nerves in the neck running to my spine. When they did the opp it turned out to be a lot worse than that, they found that the tumor was in the nerves c4 c5 c6 && that the tumor actually went into the nerves of my spine. Over the years the tumor has grown but not by much to both with but it has & does block the signals from the nerves through out my body to the brain & back again. I am in constant pain not knowing where the pain will be next & to what degree it will be. As I said I am in constant pain I have problems moving my limbs ( arms legs ) I also have muscle spasms some small others quite violent. I have problems walking sometimes through the pain other times through muscle problems, these plus many other problems.
I was told that they can not take out the tumor in my spine as they do not know enough yet so as not to kill me. So I have a tumor at the base of my lower brain & at the top of my spine that causes me a lot of bother to say the least. As this is the case I was told that this is rare & I am wondering if anyone on this forum suffers anything like this as I know no one else with this problem & it would be nice to be able to talk with someone about it. Someone who understands just what we go through & how bad it can get, I do hope that there is someone who has this & that we can talk. I will wait with hope.