Hi All,
I do not have an AN. I've mentioned that several times. My tumor is too low to be an AN. The nerves it threatens are in my left arm, because it is in the C4-C6 region, mostly C5-C6.
I met a surgeon that specializes in peripheral nerve tumors and he seems great. He had a lot more to say about my tumor, both the placement and the mass itself, than anyone has yet. My tumor is deep in my neck, not close to the spinal cord, as is typical of neurofibromas. This is very rare and few neurosurgeons have had experience with or have specialized in tumors with this placement.
I'll begin with the good news: The doctor thinks that he can excise the tumor with no detectable nerve damage. Apparently, the tumor has already destroyed several minor nerves, but luckily there is enough redundancy in the nerves that control sensation and motor function in the arm, that I haven't lost anything at all. I've had some achiness in my arm, but not much. It feels pretty normal and sometimes it feels completely normal. I have noticed a little achiness though, which I hope goes away when the tumor is removed.
The bad news? Well, it's not necessarily anything, but this doctor that specializes in tumors in this area thought that mine looked a little strange on the films. It had some characteristics of a neurofibroma, but apparently it looked strange to the expert. I don't like that at all. I'd rather have a classic looking neurofibroma or schwannoma, thanks. He says there is a tiny chance that it is a muscle tumor, and those "tend to be more aggressive." A soft tissue sarcoma? I hope not, and of course it wasn't mentioned. The doctor recommended I get it removed because it is the only way to know for sure that it is harmless. If it's not, I'm lucky to have caught it while it was tiny.
Okay, I can end with good news. The surgery does not involve sawing through my neck muscles. He will cut a single line on the back of my neck and go in and sort of hug the curve against and around my spine, then remove the tumor. I won't lose any muscle function. He'll just push the muscles apart.
Everything this guy said about the procedure sounded incredible to me. I'm very happy. The pathology is the next step.
Ali
