so I had cyberknife treatment a year ago here in austin, texas.
it is stereotactic radiosurgery. basically they shoot radiation into your head to try to cut the nerve.
I don’t feel any lessening of any of my types of facial pain, but I had one of those dumb facebook memories come up and was reminded that the doctor said it wouldn’t reduce my pain so in that regard it was a success! lol.
I had thought it was a waste of money, but later, when I gave it more thought, I realized that the tazerlike lightning strikes in my head which I had frequently, even with gabapentin and carbamazepine and tramadol and tizanidine were either all but gone, or not as tazerlike as they were before. now I couldn’t tell you if it’s because the carbamazepine just got more effective after 5 years or if it is because of the radiation treatment, because I sure ain’t about to do an experiment and cycle off of the carbamazepine, but I thought I would at least throw my followup story out here in case someone had ever considered it.
all my other pains are still present. EVERpresent. I have a mixture of tn1 and tn2. I have had a 24hr a day 7 days a week perpetual ache in my head and face for about 6 years now with no abatement.
botox injections have been helping with my newest symptom where I started to feel like someone was burning my face with a cigarette, so yay! for botox.I get it done every 3 months.
tramadol has reduced my eye pain about 70%. I take 25mg every 3 hours, and 50gm at bedtime. so, yay for tramadol, the non-addictive opioid AGONIST that still gets treated like an opiate-opiate even though it doesn’t get you high. I no longer want to take a melon baller and scoop my eyeball out.
my lidocaine ointment rx doesn’t help that much but it does a little so I keeps puttin it on. mix it up with some thermacare and that capsaicin in it might burn a little but that burn causes a bit of a nerve distraction and the outer pain diminishes but it doesn’t really last for about as long as it takes to dry off.
I tried baclofen and amitriptilyne but they didn’t do a bit of good, but hey! the amitriptyline made me literally leap out of bed at night and it gave my hands spasms so bad I thought I was getting cerebral palsy, and it sent shocks up my arms for a couple of hours after I woke up. how do I know? cuz I quit it cold turkey and none of that has happened since. easy. easy. my doc said it was ok for me to just up and quit
I think the doc is about at the end of her suggestions, although she didn’t say so, so she recommended that I go to a pain management clinic, a specific one because she doesn’t consider it a pill mill.
I go to work every day, never call out sick, cuz I can’t give in. I can’t give up. I just tell the coworkers who hear me scream randomly, or see my head jar to the side like I got whiplash, to just ignore me.
it could be worse, right?
keep up with the struggle! peace.