Hi!
Today is my 7-month MVD anniversary. Here's a quick update:
Things are going so much better than I had ever expected! I had type 1 and 2. I am mostly pain free. Every now and then, when the weather is really bad, I get some pain that is very similar to the ATN pain I used to get. No shocks, just a constant pain. (I don't like saying constant because it's not 24/7 like it used to be, but when it starts it stays for a day or so.) Even though it hurts, it is NOTHING like how it used to hurt. It used to feel like an 8/10 at best. This feels like a 5/10 when it's at its worst. I found that if I take 200-400mg of Tegretol on those bad weather days when it hurts, the pain goes away completely. I don't need to take it any other time. (I'm actually have an issue with this. My neurosurgeon said it was ok to take a small dose of Tegretol as needed. My neurologist disagrees. He says I have to take it every day or not at all. I don't want to take it everyday because I don't need it. I'm going to post a questions about this on the general forum, but if anyone has any information on this here, please let me know.) This is all so insignificant compared to how I used to feel that I consider myself pretty much cured.
Post-surgical issues:
I am still having some pain on my neck, on the side of my surgery. Every now and then it gets extremely stiff and the "hole" in my head feels like it gets deeper. Almost like the muscles are tense and on top of each other on that area by my scalp/neck. I take Flexeril as needed for when it starts to bother a lot. Again, I'll take that any day over the pain I used to have. The numbness on the top tip of my ear and just behind it has still not gone away 100%. Even if I never get feeling back 100% I'll be fine with it. It's not a big deal. For some reason I still get numbness on the left half of my lips and the tip of my nose when I get very stressed. (I did not have this before surgery.) Again, not a big deal. I actually just use it as my cue to take a few breaths and relax for a minute. The only other thing left is a small dark spot (blind spot?) in the very center of my vision on my left eye. I used to get this right before a TN 'attack' or right before my ATN pain was about to get really really bad. Immediately after surgery it would come and go, but with no pain. The neurosurgeon said it was some time of "phantom aura". Now I have it more often than not. I'm going to mention it to my neurologist when I see him at the end of the month.
Summary:
I feel 90%-99% better! There are a few surgical side-effects left but to me they are not a big deal. They are way more manageable than what I had before surgery. :)
-i