I got a call from my neurologist tonight at 6pm. As soon as I saw it was him calling & I saw the time I knew something was wrong. He told me that my MRI’s showed a spot on my brain, not near my Chiari, that was of interest. He told me it was a Spindle cyst, I’m not really sure what that is but if anyone can dumb if down for me, that would be greatly appreciated. I don’t know what to do if I don’t know what I should do about it. Any comments welcomed with open arms - I need as much help as I can get right now. I don’t understand what that means for my surgery or if I need to be putting this “tumor” they found above my decompression surgery?
Firstly, I am not a dr. Like you, I’m a patient and like all medical conditions, they need to be fully explained by a dr. In my initial appointments, I took a note pad. When the neuro started talking in medical jargon I’d write it down, come home, then investigate. I tried to keep myself as well informed as I possibly could because some of their language can be overwhelming to say the least. The other extreme is that the neuros can seem disconnected, we are often nothing short of an emotional mess and they come across with minimal concern. Either way doesn’t fill us with much confidence.
So, this explanation is going to be in VERY basic (non medical) terms.
When they say ‘spindle’ they are talking about the shape of the cells under a microscope. Usually the cells are roundish in shape, but they can change shape, hence the name ‘Spindle cyst’, the cells in the cyst are shaped like a spindle. The cells are usually around the connective tissues and the body can sometimes create a cyst around such cells.
Now, as for what that means for YOU, that is something that needs to be discussed with your medical team. It can be very individual. If you think of every bone and muscle in the body being connected to another with ‘connective tissues’, the exact location and size of a cyst can be extremely important. What other structures are near that location? You have another underlaying condition. How does that all need to be managed? These are ALL things that only a fully qualified neuro can interpret because each could have it’s own unique perimeters. They could say ‘One has nothing to do with the other’ or they could say “They are directly related to each other and therefore have to be treated in conjunction with each other”.
So that’s a bit of VERY basic laymans info.
As for what you can do about it all? The shortest (and most rude) answer is: Not much. You have to hand all of that control over to the medicos and if you’re anything like me… …that ain’t easy. My advice is to keep yourself occupied, doing something, ANYTHING. Read a book, take up sewing or knitting or jigsaw puzzles or word puzzles etc. Some people only think of the physical impacts but the mental impacts of a neuro diagnosis can be ENORMOUS. And if we actually sit down and constantly think about it all, the mental stresses can become overwhelming. Don’t let it get to that point, reach out, ask for help. There are local services available if needed, just ask.
I’m not saying we have all of the answers, we don’t. But we too are patients and we know what this journey is like and we know it is not easy because we’ve been there too, so come talk to us.
Merl from the Modsupport Team