I just got this e-mail: “Dr. Hecox reviewed the ENG results. He feels they are consistent with vestibular neuronitis. He would like you to pursue with what is available locally for vestibular training. You can also initiate the Diamox per Dr. Hecox.”
I wrote back and said to ask on what possible grounds he finds the ENG to suggest VN. I said, “What about this suggests VN? I thought the big test for VN was the caloric test, which produced a strong symmetrical nystagmus each time. Isn’t that indicative that no vestibular impairment / loss is evident?”
I DO NOT have the patience for Diamox, for VRT, or for any more of this. If he doesn’t come back with a REAL good answer, it’s back to Hain, whether anyone likes it or not!! I am tired of being the medical guinea-pig for clueless doctors, endless tests, go-nowhere treatments, and most of all, I’m tired of feeling the way I do.
I can imagine your terrible frustration with your doc’s response to the results of your test. In fact I even double checked today with my vestibular therapist and he said that with VN, if it is not compensated, you would have a positive ENG. He said that if you were still having symptoms and the ENG came back negative, then it is not VN.
Do your parent’s see that your doc is incorrect?
Stick with your gut!
I wish I could at least get rid of this violent rocking feeling. It’s been with me since I began Inderal. Probably just sped up the natural progression of MAV.
I wonder if Hecox decided that the ENG was positive. He didn’t say so explicitly. Though if he did, I suppose he would have had to go to the oculomotor tests, like saccade, to see abnormal results – but things like poor pursuit aren’t really indicative of VN any more than some other disorder.
The only thing slightly odd in the caloric test was that the left-warm generated the least response – a good half of that of the others (it was 22; the others were 40’s and 50’s).
I agree with your thinking on this. Go back to Hain or at least someone who knows the many facets of migraine. This VN dx is ridiculous. Why would you have VN all this time or still be so heavily decompensated anyway? It’s bull.