Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.
That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.
I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.
Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.
I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.
I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
- Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
- Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
- facial nerve blocks - seem to give temporary relief, most insurance won't cover
- novacaine at ganglion nerve - temporary
- radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
- Motor Cortex Stimulation- they put electrodes in your head
I hope I'm not still blogging about this when I'm old and gray.