Looking for some general advice on my situation and imaging posted below. To date I’ve had 3 surgeries:
Surgery #1 2023: Bilateral styloidectomy to address bilateral Eagle Syndrome. At the time my LEFT side was not experiencing any symptoms/issues but Kaiser in CA does bilateral by default and I was not educated enough at the time to push back on this. All of my symptoms were on my RIGHT which is my dominant IJV.
Surgery #2 June 2024: Kaiser did not fully decompress my RIGHT IJV so I had surgery with Hepworth in CO where he further decompressed the IJV and shaved C1 as well as removed several swollen lymph nodes.
A few months before surgery #2 I started to get pretty bad LEFT side TOS symptoms but didn’t have much face or neck pain on my LEFT side at this time. Then about 3 months after surgery #2 the LEFT side of my face started to swell. The swelling is constant and varies in severity. I also experience on the LEFT side numbness of my lips and cheek (like a line is drawn down the middle of my face), front of neck burning pain, back of neck burning pain/occipital, ear fullness that fluctuates. If I push underneath my ear as shown in the picture it’s very hard and at times hurts so much to touch.
Surgery #3 December 2024: Unfortunately Hepworth didn’t fully decompress my RIGHT IJV so I had another surgery with Costantino in NY. He performed a reception of the posterior belly of the digastric muscle, Occipital artery lysis, Jugular vein fasciotomy and mobilization, C1 transverse process resection and also removed 3 swollen lymph nodes.
The LEFT side symptoms have only continued to worsen, while my RIGHT is finally feeling better. I’ve been told by Hepworth, Costantino and several other doctors that nothing can be done for my LEFT because the IJV is hypoplastic as well as my transverse sinus. In fact, none of these doctors were even able locate the LEFT IJV on my CTV/CTA and all of the radiology reports say “The left jugular vein is not visualized at the left skull base”. A wonderful friend loaded my imaging into Radiant and was able to locate the LEFT IJV and a shoutout to Isaiah for annotating the pics 
- she’s literally been my guardian angel for this whole journey!
I honestly don’t know where to go from here since it may no longer be a vascular eagles syndrome issue or if there even is an issue. Is there by chance lymph nodes fascia or a muscle contributing to some sort of compression on the left IJV? Is the left IJV even the issue or is the internal carotid more of a concern in its placement? There’s also a weird grouping of lord knows what next to C2/C3 (circled in red).
I’m just hoping someone with more knowledge can see something off in the images below and help point me in the right direction. Thank you in advance for any advice!
