There are some experienced ES doctors in FL, so here’s the up to date list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Maybe you could make some enquiries with some of them to see if they do a CTV?
We have had a few discussions about CTV; sometimes this term is used to refer to a straightforward CT with contrast where the patient is scanned as the contrast goes through the veins, so any obstruction can be seen; it’s quite routine so shouldn’t be a problem finding somewhere to do this. Or CTV is sometimes used/ confused instead of the term Cerebral Angiography/Venography to mean a more invasive procedure where a catheter is inserted through the veins into the neck to scan in more detail, but also carries more risk and so is less commonly done. Do you know what exactly was suggested? A CT with contrast can show the styloids clearly, also the CTA that you had done should show them, but not the effect on the jugular veins. (You could get an idea if the styloids are elongated and possibly causing symptoms from this, if you could get a copy of the imaging you could have a look at that yourself & compare it to images on here?) If you were to want to pursue the more invasive Cerebral Venography I don’t know for sure, but I would imagine you might have to travel a bit further…
(Some members have also been diagnosed through Caring Medical in FL; they don’t do CTs with contrast so I don’t think could diagnose vascular ES, but do a cone beam CT which would show the styloids. The prolotherapy treatment that Caring Medical do doesn’t very often help with ES, so I wouldn’t suggest doing that, but if it makes it easier to get diagnosed it’s a thought…)
Hopefully some of our members in FL can give you advice about specific doctors & where’s best to get a scan.
2 Likes