Understood and edited my comment to be more general
Just to answer your title about anyone with C1 compression… I have recently seen Dr. Liu and Dr. Hepworth and both separately recommended C1 transverse process resection for me.
I do have calcified styloids but I believed from early on that my issue was more related to C1 and after consulting both Dr. Liu and Hepworth, they both independently seemed to agree. Both said they plan to remove as much of the styloid as possible but C1 was main the culprit.
From what I have read, Dr. Costantino is finding C1 to be the more important factor in a lot of cases as well. My guess, and this is 100% just a guess, is that styloidectomy has been a hit or miss surgery for so many people in the past because they weren’t looking much at the C1.
It seems these surgeons are starting to turn the corner and really identify C1 as the main driver of IJV and nerve compression for many people.
Like you, I also have loss of lordosis, but Dr. Hepworth told me curve correction alone was unlikely to fix my symptoms and he recommended working on my curve as more of a long-term measure but that C1 transverse process resection and decompression of anything else between my skull base and clavicle was recommended. I have heard many people on this forum describe Hepworth as being very conservative with the C1 so it actually gave me a lot of confidence that he was suggesting not just a conservative shave but a resection of the transverse process as he identified that as my main issue with the styloids being secondary.
I say this all to point out that your styloids don’t have to be terrible for compression to still be causing you issues.
BTW, I am scheduled to have surgery with Dr. Liu in January. I was very impressed with both him and Dr. Hepworth but Dr. Liu is able to get me in much quicker and I have been very happy dealing with his office staff as well.
Best of luck to you and keep us all updated!
@biggfish02 I’m glad that you were able to get a couple of opinions, and that there was agreement between the doctors, so that gives you confidence! Good that you have surgery in January, do you have a definite date?
Thank you! It should be January 6th. Sounded like Dr. Liu has openings before that (November and December) if others are wondering, but I chose to to wait until the new year for insurance reasons.
Good you have a definite date, will pray for a successful surgery ![]()
Thank you SO much for chiming in! I completed the contact form for Dr. Liu and am waiting to hear back and will look into contacting Dr. Constantino or Hepworth as well. I’ve just been flabbergasted that my IJV compression by C1 is being ignored, but I recognize it’s a newer area of consideration, even amongst ES surgeons.
I’ll keep the group updated if I hear back from any of these providers and get any helpful input! I’m also not trying to blindly push a surgery for myself, but I want this finding to actually be considered because it’s one of the only potential causes I have for my symptoms
I hope your surgery goes seamlessly in January! If you don’t mind sharing, what are your top symptoms?
Thank you for sharing what you’ve been up to with doctor consults! I’m so glad both Dr. Hepworth & Dr. Liu’s opinions agreed, and you’ve got a surgery date on Dr. Liu’s calendar. I’ve also put it on mine. ![]()