Hello all , I have Geniculate neuralgia and I’m into my 4thbyear . I’ve only ever had a MRI. Aren’t there some other scans that show things better ? Show the nerves ? I’m so sick of this shit . I’ve been off of all meds for almost a year now and fighting the pain with exercise ( weird but it works for me , or did ) well now it’s not working and its time to go back to the doctor. I’m scared as hell . I’m not ready to be turned down over and over again , not ready to be sedated on what ever crap they try and give me . 90 % of people have the surgery . So why is it I keep getting tossed aside ?
I believe a FIESTA MRI shows nerves better.
I am sorry that the exercising is no longer working well. A regular MRI will not be of much help other than to rule out MS and a few other things. The best types of scans to use are MRIs using either a CISS, VIBE, or FIESTA protocol, preferably using a 3 Tesla magnet. However the standard 1.5 Tesla magnet that is used in a regular MRI can be used. It just won’t show as clear a picture compared to the 3 Tesla. These types of MRIs are generally found in larger city or university hospitals.
The best type of surgery for GN is an MVD. It has the highest success rate of any surgery. Of course it is up to the doctor and individual. Sometimes a rhizotomy might work or a balloon decompression.
Sometimes, the best surgery might be neurostimulation. If you go this route, make sure that your insurance will cover it, make sure that your neurosurgeon is capable of doing it, and check out the results of his/her prior results. The success of this surgery totally depends upon the skill of the neurosurgeon, the placement of the leads, and the anchoring of the leads.
Another thing is to not be frightened of the doctor visit. A day before your appointment, sit down and think of and write down questions to ask your doctor. This will give you time to determine what you want to know and it takes away some of the stress of a doctor visit. Remember to advocate for yourself and don’t be afraid to ask questions and get the answers you need.
Hi. I found this in a recent publication (for TN)
“3D high-resolution T2-weighted cisternography centered on the trigeminal nerve, 3D time-of-flight angiography, and 3D gadolinium-enhanced T1-weighted imaging” - all to increase the sensitivity and improve the specificity. “This combination allows the detection of pureley venous compressions or veins associated with arterial conflicts as well as the differentiation of their exact anatomical origin”.
This is from:
Brinzeu et al.  in Journal JNS
I want to ask my doctors to look at this recommendation and hopefully do these scans as well.
I believe (though could be wrong) that the 3d bits above refer to postsxan processing of the obtained scan data - if so, this likely means extra work for the doctors and which is not easy to get out of them (because usually they are busy).
Nice answer, only thing I can add, make the questions in the way to decide after you balance after what you can gain and what you lose, don’t hurry till make sure you are ready to the result