Newly Dx and confused by Radiology/ pain in V1 & V3

Hello,

I am newly dx as of Sept this year. I have suffered with complex non-retracatalke migraines for over five years and fibromyalgia for just as long. I am scheduled to start botox injection therapy for migraines next week. I am concerned about my dx of TN and what the radiology report says. I had an MRI w and w/o contrast last week which read: "5mm focus of hypointense signal...(situated in the trigemninal cistern)...could be small exostosis, calcified meningioma or an aneurysm."

I head back to the lab next week for a MRA to detect whether this is artery related or not. I also have several patches of disturbance across white matter of my brain which is remarked as typical with chronic migraines. From what I have read (TONS), if TN is caused by an artery loop then the best measure of tx is to do MVD and avoid meds all together. I should note that I have had severe reactions to many meds in the past and at times have had to report side effects to the FDA hotline.

My original source of pain was in the V3 area, radiating down the neck and mostly into the ear. it lasted about a month and let up for a month. It is slowly returning along WITH pain across my temple, forehead and into my eye socket. At times my eye is itchy and feels blurry and droopy. Too, I get VERY nauseated with the pain and it lingers long after the pulse of pain. There have been times that I even drool uncontrollably.

I have been told that my cumulation of neuro disorders put me in a very rare class and have even been asked to offer myself for research, ha ha... I am wondering if anyone else has had the same diagnostic results and if so what was the outcome? Also, does anyone else have both V1 and V3 pain...?

Thank you so much for any input- I thought migraines were bad, but this is beyond words.

The radiology results may or may not be significant. They indicate that MRI "sees" a small area where the contrast agent didn't penetrate, in one of the natural cavities of your skull. The "could be" is largely a surmise by the radiologist. You need to have your attending physician tell you what his or her opinion is with regard to what this is and what needs to be done about it -- IF anything. If the mass is not believed to be malignant, you might very well be advised to do a "wait and see" for some period of time and then have MRI done again to compare outcomes.

Concerning MVD, a couple of thoughts. First, it would be rare for either neurologists or neurosurgeons to recommend that you go direct for MVD and avoid meds altogether. If you've had bad reactions to several meds, that could be one of those rare exceptions. Pain in V1 and V3 is reasonably common in both TN and ATN. Nausea isn't common and is more likely a consequence of your migraines. Drooling uncontrollably might be an indication that there are nerve compressions in other areas than the trigeminal nerve. Stabbing ice-pick pain deep in your ear would be regarded as an indicator for geniculate neuralgia -- a compression of an extension of the trigeminal nerve. If you have fibromyalgia, where else in your body are you experiencing pain? I would expect areas well away from your head and neck to be involved.

This combination would lead me (as a well read non-physician) to suspect that you may be a candidate for MVD, but should not expect your migraine symptoms to be much affected even if you have one. Your surgeon can advise you best on what approach is appropriate to explore or treat the mass in the trigeminal cistern. Aneurysm can be difficult to safely excise anywhere in the brain. If I remember correctly Meckle's Cavern (the trigeminal cistern) will not be available to an MVD. It will likely be reached via a needle inserted through your cheek, in a different procedure.

Feel free to come back with questions. Let us know what you learn from the MRA and your follow-up appointment with the referring doctor.

Go in Peace and Power

Red

Hello,

Thank you for your reply! I have a few other points/questions I'd like an opinion on if you don't mind...

-I looked up the symptoms of the geniculate neuralgia and that sounds exactly like part of my problem, however I have been tested by an audiologist and my ear structure and performance are excellent. One thing that was weird is when they played high pitched noises to test my hearing the pain instantly went away, but no doc can explain why. I was wondering if you have ever heard of that...?

-When my V3 hurts it is a deep sensation with vertigo, but when my V1 hurts it is more of a throbbing close to the skin... Is this both ATN and TN?

-As for my Fibro, that is more of a deep ache that cycles every few months to a different region in a set pattern which is weird, but that seems to be a whole other enchilada in terms of pain type.

My MRA is next Wednesday, follow up with neuro that Friday. I once was an anatomy/physiology major so for me this is all too well known in terms of location and such. I like to be an informed patient- I've been told at times that I'm too informed but hey, it's my body! Thanks again for any insight- at times I feel like I am going bananas!

Take Care :)

When life deals you bananas, look for ice cream to make a banana split... {:-)

Not to trivialize what you're going through, of course. Geniculate Neuralgia, so far as I know, is purely a nerve disorder causing pain. It does not directly affect the auditory nerves, however, and an audiologist can't confirm or eliminate that you have it. I've never before heard of a case where high pitched noises consistently make the pain of this form of neuralgia go away. In some cases, patients report pain triggers that seem to work the other way around.

Vertigo may be an indicator that you have vascular compression of a nerve ganglion that is active in the balance system. MVD has been proposed for decompressing that ganglion, but from what I've read, the results seem to have been pretty mixed. It is quite possible that you have both TN (Type I) and ATN (Type II) at the same time. However, classic TN is distinguished by volleys of short, very sharp electric-stabs of pain where each stab lasts up to two minutes, and the volley tapers off after 90 to 120 minutes. Generalized throbbing, aching, and burning pain that lasts for many hours at a time would usually be diagnosed as "Atypical Trigeminal Neuralgia" -- or if the pain began after a discrete physical injury it might be called "Trigeminal Neuropathic Pain"

Good that you understand the anatomy. It is not my strength. I may come back and ask you for insights on some of that, or online references to use in various articles I'm working on.

As I once told a doctor in our initial interview: "It is fair to warn you that I am a difficult patient. I require that you consider me an active member of my own health care management team, and yourself as my colleague in that enterprise. I'm paying you, which makes you my employee. So leave your god complex at the door. If you can't embrace those ideas, then we won't do well together. "

Regards and best,

Red