Hi friends,
it has been a while since I have posted on this thread. Cheryl, I was reading back , and I would love to hear how your TN meet-up went! And Bulliemom, I have the same point on my nose, and I also see it as the "mother-lode of pain". It was one of the points that we were trying to hit with my PNS.
I want to report back in since I saw my neurosurgoen. He was in a jovial mood again, nothing like the temper he threw at me last time. My husband, after we left, pointed out that one of the comments he made was as close as he could get to apologizing for the last time.
Anyway, we spoke for a while again. he wanted to try to reprogram the leads himself, but the computer had not been used for so long that he just gave up and said "Oh. just lets do the surgery - I have already had the tool made up to do the re-placement anyway"
So I will finally get on the schedule. This is what needed to happen. I really need him to hit that sweet-spot that buliemom wwas talking about on the nose - it is getting missed by the current config, and it really made a huge difference during the trial. I have a photo that shows exactly where it was, and he told me to bring it, and he would use the photo in the ER to position it - yay!
So, this took many months, but we are finally getting there.
Oh, and my lead has gotten caught up in scar tissue down my neck, and as a result I cannot really tip my head to the left. He said that he would have to fix that with a different surgery at a different time. Somewhere closer to April! He said to just not tip my head to the left until then. Right. That's likely to happen.
One more thing that he brought up is that one of his colleague/friends (the only other NS in this area who does pain/stim brain surgeries) has found a successful way to do the gasserian nerve stim, and mine feels excited to try it. I think, this time, that I will let him cut his eye-teeth on another patient. I would love to try it. I had asked for it the last time, and he had said "no". I had researched it and it did look promising in the medical journals, at least.
So, that is my update, I wish that this all had taken place with allot more speed. I understand that he is up to his ears in really important surgeries such as DBS and MCS, but I am just as important. He really wants to just have me get the MCS done, but as bulliemom mentions above, she remembers my complication after complication (6 month worth, including meningitis) and then my near loss of life, and the MCS just doesn't seem approachable to me. I have seriously thought about therapy to deal with this fear, but I just don't know if I even want to go that far. It is my life to gample with, after all, and my brain seems to be really adverse to being disturbed. Ughh - I tear up every time I even think about what my husband must have experienced to watch me code. I am doing it as I write this, in fact.
Thank you to anyone who has made it to the bottom of this post, haha
Happy Holidays, and love to you all, and a super big hug to my lovely friend Tina. Hope to see you back, but take your time, sweetheart.
Lily