Longest Six Months Of My Life
It's been six months since the second neurosurgery. The dysesthesia pain got worse than it had been in early January, starting the evening of January 17th, but it seems to have calmed down some. It is still dreadful, but I am very rarely getting attacks that make me feel as if I can't move my head. I have felt like the left side of my head has had a metal chain link vertically running down the side of my skull inside the skin. Also, it has, and still periodically feels, as if my temple is in a vice, and the whole left side of my head feels as if it is being crushed. My cheekbone was also experiencing terrible pressure: it felt like it was going to break at any second. I could feel the muscles in my face and still can; they feel like rubber-bands tightening and loosening. The rubber-band feeling is very often taken over by a metallic feeling, so the muscles then will feel like many strips of metal moving throughout my cheek and chin. I have described them often as horizontal serrated knives in my face. I still get the feeling as if all three branches of my trigeminal nerve are bursting through my skin at times. From two inches below my hairline on my forehead down to my temple has felt as if it has a metal plate clamped tightly on the muscle and bone under the skin. The left side top first molar doesn't hurt QUITE like it used to, but it is always at least very annoying and sometimes still very painful. My left side bottom front tooth has acquired a "buzzing" feeling and is now throbbing. It has been terrible and frightening at times, especially when it felt like I couldn't move my head.
It's been very hard for me to just sit down and write about the sensations I've been experiencing, especially when the pain is so intense that it's completely disorienting.
I am trying to organize everything I've written about the craniotomies I've had along with the conversations with others that have the same condition that I do and have had similar procedures. Almost all of the entries in LiveJournal that I've used to keep track of these things are private since there is so much that needs to be added and back-dated. At some point I would very much like to have an informative publication (book, online, or otherwise) about what I've been experiencing, so as to help others who find themselves in this very rare, same situation, or possibly other rare, similar situations. The frustration of having so little information out there for a rare neurological situation is very discouraging, and when you're going through months of painful recovery, you need all the encouragement you can get.
It's been very hard for me to just sit down and write about the sensations I've been experiencing, especially when the pain is so intense that it's completely disorienting.
I am trying to organize everything I've written about the craniotomies I've had along with the conversations with others that have the same condition that I do and have had similar procedures. Almost all of the entries in LiveJournal that I've used to keep track of these things are private since there is so much that needs to be added and back-dated. At some point I would very much like to have an informative publication (book, online, or otherwise) about what I've been experiencing, so as to help others who find themselves in this very rare, same situation, or possibly other rare, similar situations. The frustration of having so little information out there for a rare neurological situation is very discouraging, and when you're going through months of painful recovery, you need all the encouragement you can get.