Hopefully that will happen sooner than later, @Snapple2020!
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I’m really glad this gave you some hope 
Having your tonsils removed at such a young age is interesting, since that’s one of the suspected contributors to Eagle as is trauma, seems like the perfect storm. If I’m not mistaken, Eagle can progress very slowly over a long period of time and remain asymptomatic until it isn’t anymore. I actually never had sinus issues until the facial swelling started. My cheeks were so swollen that someone I hadn’t seen in a long time asked if I was getting fillers, lol.
I ran the nostril bump question through AI out of curiosity, and what came back was that bumps inside the nostril that change size are often related to local inflammation or vascular tissue in that area. It listed several possible causes. I don’t know about you, but sinus surgery really affected my mucosa, my nose is very dry all the time now. For reasons I still don’t fully understand, my ethmoid sinuses were removed even though they weren’t an issue, and those help produce mucus to keep the nasal passages moist. In hindsight, that’s something I would have questioned more closely.
I truly hope surgery brings you relief, even in ways you might not anticipate.
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@Snapple2020 I’m really intrigued by your IJV compression being caused by swollen lymph nodes.
My first second opinion through Stanford, with a neurosurgeon, noted a soft tissue lesion at C1 that was thought to possibly be a lymph node or a fascial band. A subsequent second opinion through Stanford with an interventional radiologist felt it was most likely a fascial band lesion and it was not a lymph node. The neurosurgeon recommended serial MRIs. I have not investigated further but plan to soon. I do wonder what issues it may be causing, especially since it has increased in size compared to my 2021 imaging.
Do you know if they’ll be able to visualize the lymph node during your upcoming surgery? And if you’re comfortable sharing, I’d be really curious to see what it looks like on imaging, I’d be happy to share one of mine as well.
I completely agree with your advice about medical records. I’d also add that it’s worth researching that the correct imaging study is being ordered for the area of concern. I had an NP want to order a CT for a lesion that is best evaluated on MRI (3T if possible).
I also really wish I had started a journal at the beginning of this health nightmare; it would have been incredibly helpful over time.
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My original ES surgeon only wanted CT without contrast but his focus is only styloid removal, not vascular. Personally, I think he did me and other patients a disservice by not addressing vascular compression especially giving my history of EDS and symptoms.
I dont mind sharing my imaging however I have pulled mine into several viewers (MAC based) and tried finding these and cannot seem to get everything to display. Im not good at reading outside of 3D yet. I have to play with this software more. I know he showed me in the office on his screen and damned if I can figure it out myself. If your good at it and have a place to download imaging or give me some direction, I can get it to you somehow privately. Im reasonably tech savvy if given direction. LOL.
One of these enlarged nodes is next to the thyroid so when I got back to my state, I went and had US per his order to look at the thyroid and lymph nodes in my neck. They could not find any enlarged lymph nodes. Go figure? This radiology group is fairly decent but I wouldn’t bet my life on their opinion either.
So my understanding is that he will remove the lymph nodes and he will biopsy them after removal. Im pretty certain I likely have adhesions in there too because I have a long history of nerve compression, tears, adhesions and had alot of proliferon therapy bin my neck back in the day. An old 2002 report from UCLA Head & neck stated I had ropy like cords and nodules in my neck. I had hoped my original ES surgeon would look at this stuff but he did not.
Interestingly, I had dynamic catheter angiogram done in Jan 2025 at UCLA however I didn’t know any better to make sure they looked at my IJV’s. They only looked at Carotid and Vertebral Arteries and the interventional radiologist was kind a d***k when it came to doing the dynamic portion. I should try and pull that imaging into to my software and see what is there? Once I figure it out. Unfortunately, my old neurosurgeon there went into private practice and is cash pay. I wasn’t real thrilled with the care I got last time I was down at UCLA.
Fortunately, I have collected my records thru the years and put them in tabbed binders however it seems new doc never are interested in my massive binders or tooling of a history. They do serve as good review for me and I can pick out important symptoms and timelines. Im a bit of a nerd and detail oriented. Ive had to be to get anywhere in this medical system.
if that so called lesion is growing, Id be wondering too!
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