Just Got Diagnosed with ES - Years of unexplained symptoms - Finally a lead

Welcome to our forum @tinyeagle! I’m glad you found us. We have the names of a couple of doctors in Mexico on our Doctors List so maybe they’re different than the doctors you know of.

From the symptoms you’ve described it does sound like you may have vascular compression & most likely of the internal jugular vein(s). What symptoms does your metabolic syndrome cause?

MRI imaging isn’t very helpful in diagnosing anything ES related. If you think you have vascular compression getting a CTA/CTV would be much better from a diagnostic standpoint. Contrast is injected into your arm during the arterial phase of the heartbeat during a CTA & during the venous phase of the heartbeat for a CTV. These can both be done in one imaging session. Your doctor can request for the imaging to be done dynamically i.e. with your head turned left/right, looking up/down which will definitely show if there is compression, however, many of our members have gotten diagnosed just by having a CT with contrast without the dynamic aspect.

The pictures you posted are quite good so no apology necessary. I’ve annotated a couple of them. The good news is that you appear to have good space between your styloids & the transverse processes (TPs) of C1, however, since you have symptoms of vascular compression, it’s possible the TPs of C1 are pressing in on your IJV(s) thus compressing them & causing symptoms. This can also cause compression to the vagus nerve as it sits against the IJVs in the carotid sheath at the level of C1. The vagus nerve is the most extensive of our cranial nerves & can cause all kinds of miserable symptoms when it’s irritated or compressed. If you have IJV compression, you’ll want to see a surgeon who is very experienced with IJV decompression in order to get a good outcome from your surgery. I’m sorry we don’t know of anyone in Mexico who does that though we know of a doctor in Arizona who does if you can travel outside your country for a consult.

Read the information in this post prior to your consults as it gives guidance on questions to ask doctors when you have your ES consultations -

Definitely! Your right styloid is thick & long plus there’s significant stylohyoid ligament calcification. Your left styloid looks like the tip broke off & now has a jagged/sharp tip plus there’s stylohyoid ligament calcification on the left as well. Those bits of ligament calcification can cause the same types of problems as an elongated styloid does.

Yes! All those symptoms can resolve or significantly reduce once the styloids are removed & vascular decompression (if present) is taken care of. Recovery takes quite a number of months & up to a year or more for some symptoms so patience is key. Some symptoms resolve faster than others. Tinnitus is the one symptom that sometimes never goes away entirely but for some people it does.

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