Hi TN Family,
I live near a city with amazing neurologists and neurosurgeons. I have seen several. In the past 8 years I have been on every medication combination for TN there is. The last 9 months I've had a nonstop, everyday flareup of terrible pain (you understand). The neurologists tell me there is nothing medicine can do to help me, I need surgery. The neurosurgeons tell me my best option is medicine because my TN is either TN or Trigeminal Neuropathy and they don't want to do anything that would make my pain worse. My thin slice, FIESTA MRIs show NOTHING even close to the trigeminal nerves. My current neurosurgeon, who is THE guy in the city I live in has suggested Motor Cortex Stimulation. He said he wants me to read about it and think about it. He then said I need an fMRI and then he is going to think about it to see if he really thinks it will help me or not.
I feel what we all feel. Frustration. Pain. Sadness about my future (I'm 30, a newlywed and was hoping for kids).
I've also been on Depakote (among other meds for TN) for several months and my hands just tremor like crazy. What is the deal with that? I finally told my Dr. the other day at my family's urging, but she has yet to get back to me.
Wishing you all healing thoughts and pain free days and nights!
LBHiker
LBHiker,
sorry for all the pain you're dealing with. i had motor cortex stimulation 3 months ago for gpn, type II. unfortunately it hasn't worked for me. at least not yet. i travelled to chicago and worked with a top NS in mcs for trigeminal neuralgia.
you mention that no compression shows on yr fiesta MRI. on this site you'll find some people had compression and successful MVD despite nothing showing up on fiesta mri.
when i was considering MCS I couldn't find any recent descriptions online of surgery/recovery from patient point of view.
I'd be happy to answer any questions you may have. IT's relatively low risk and recovery is actually easier than than MVD. it's experimental which is why is done so rarely. you don't want to get the functional MRI until you schedule surgery. it's not diagnostic tool but rather to guide surgeon. also, insurance won't cover it unless you are having surgery. even in major cities, it's very challenging to find doc who is capable of managing device (often needs to be reprogrammed particularly in first 5-6 months.)
success rates are at about 50-60%. when you are suffering with this terrible pain those odds are pretty good.
i hope you find a solution.
Dear ithurts, I have no idea how I went so long without commenting on your thoughtful post. Thank you for responding! I haven’t been on in a while between all the Drs appointments and life. It turns out I do have a compression near my left trigeminal nucleus - in the pons, which is an inoperable area if the brain. So a mvd is def out. Motor cortex stimulation is my best bet since meds don’t work. I’m currently fighting my insurance company to cover it. How big was your incision? Do you set off metal detectors? I’m so curious about these things. It’s just a matter of time before I get it. Fingers crossed for sooner rather than later.