Three different opinions

General General TN & GPN (Old Site)
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I won't mention names or cities but here's where I'm at"

Symptoms: Severe pain in ear and back of throat. Long history of sinus surgeries (four) and some level of pain for years. However, in the last two years, I have been hitting Level 8 or higher 39 percent of the time (yes, I'm tracking it.) Meds include Lyrica, Ultram and Hydrocodone, as well as Tylenol, Aleve, Accupuncture and Medical Hypnosis. Tried Tegretol with no improvement, but many side effects.

Doctor A. (highly respected at major medical school) looked at MRI in April and saw a vessel on the geniculate, AKA nervus intermedus (crainial #7). Geniculate neuralgia is often described as "ice pick in ear pain." I describe it as "screwdriver in ear pain. He doesn't see any vessels pushing on the GPN.

Suggests microvascular decompression of geniculate and rhizotomy (clipping) of GPN. I am VERY concerned about clipping as I have swallowing problems when pain level is high.

Doctor B (Pittsburgh-trained, former professor): At first said he saw nothing. Ordered 2nd MRI in May and then said he might see something on the geniculate, but not sure, and "they won't know until they get in there." Concurs with surgery. Suggests that I could tell Doctor A not to clip GPN...to only do MVD on geniculate. Says I have some symptoms of atypical GPN and some that are "typical."

Doctor C (frequently mentioned on this forum as an expert): Looked at 2nd MRI and says he sees nothing that is a candidate for MVD (both geniculate and GPN), i.e. they see no blood vessels pressing on either nerve. As a matter of protocol, they do not clip the GPN. Suggests further workup with sinus/ENT people.

We are going back to see Doctor A. and ask him to look at the second MRI and confirm his diagnosis. His opinion was rendered from the first MRI. Also we will ask exactly why and how he would do rhizotomy.

Any other questions or thoughts any of you on this forum have? Thank you so much for the information and caring of this group.

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Hi Leah, it must be so frustrating for you getting all this conflicting information. I don't know whether you guys have access to the video by Dr Ken Casey on the LWTN site: http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken

It quite long, but very informative - I watched it a few nights ago -may help you to form some additional questions. Let me know if you have trouble accessing the video. Hope this helps. Smiley:)

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I'm sorry these docs aren't making it easy on you, Leah. I hope you find the very best course of treatment, and get terrific results. Keep us posted on your journey.

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Hi Leah. I understand and can relate to your story of different docs, different diagnoses. Honestly the resources that have helped me more than doctors are Ben’s Friends and the GNP FB pages. This condition and its possible resolution is a process. I have GPN, GN, and vagus and accessory nerve involvement. My neuralgias have been progressive and the condition waxes and wanes, changes in intensity, location, area, size. I’m going through a particularly painful episode right now. By the time I was properly diagnosed (they got a good visual of the PICA laying on top of the glosso nerve on the 4th MRI over a period of about 6 years) a doc that I trusted said it was beyond repair…I guess there’s a window before it’s just widespread neuropathy (at least that’s the way I understand it). So, now I just get to live with it. My point is that it took 4 MRI’s before the compression was visualized and I think it’s because my doc said to really look at the brain stem - FINALLY. Good luck to you and keep us posted. Hope you’re having a pain free weekend!