So I had an appointment with Dr Axon today…
For anyone planning to see him I have a few things to note…
He told me very early on that he is not allowed to remove the Styloids for anything other than eagles syndrome, which he catagorises very strictly as some with a stabbing pain under the tongue and in the tonsil area, made worse by swallowing, and a stabbing pain in the back of the jaw up into the ear.
He also said that vascular eagles is very specifically only where the styloid compresses the carotid, and not the jugular vein. He says vascular eagles causes a pulsatile tinnitus which is only a wooshing sound, not anything else. Not a throbbing, not a rhythmic tone, not high pitched, and must be stopped by putting pressure on the neck by the carotids.
My situation of a rythmic high pitched tone which drops in pitch and tone with my pulse doesn’t fit his criteria, nor does my infrequent bursts of throbbing sounds in the ear, or my hearing and feeling my pulse in my ear.
He said in my case, with headache, head pressure, dizziness and fatigue being the primary symptoms, he would not be able to operate on my styloids, even if a CT venogram showed definite compression of the jugular at C1 level. He seemed very convinced I didn’t have eagles. My styloid length of around 3.5 he said was not sufficient to be eagles.
He said they were allowed to do this surgery for around 5 years, but he said that the was stopped by neurosurgery, who didn’t like it, and he admitted that it was “hit and miss” whether it would resolve people’s symptoms, which is why he has now very strict criteria of having either the specific pulsatile tinnitus or eagles syndrome as he catagorises the symptoms.
He seemed quite dismissive of the idea of jugular vein compression by the styloids as a causation of symptoms, claiming that many people show this kind of presentation on CT without symptoms. He said it was more likely the jugular being draped over the top of the C1 transverse process than any compression by the styloid, and that even when CTV shows stenosis or compression of the jugular, it is still very unlikely to be symptomatic, as he says most people are not jugular vein dependent / dominant and have sufficient outflow from the brain without using the jugulars. So even where CTV may show a compression, he would still be very wary of operating.
Alot to digest, and feeling a bit like I am back to square one!
He offered me a CTV all the same, but clearly won’t take the case any further regardless of the report.