I had my virtual consult with Dr. P this morning, where he met with me for about 20 minutes to go over my scans (MRVs and CTs). He started by confirming my SSCD diagnosis, and then we talked about jugular compression. He said he thought it was an over diagnosed condition because of the all the variables of looking at the jugular, i.e. body position, breathing, turning head, etc. He did say that my images showed some compression, but maybe the other jugular was compensating for it. My next step according to him would be a CT venogram to see the vein better. I called to get an appointment with Dr. Mehta in AZ, but his first available was Nov. 5th - ugh! Overall, I would say the appointment was meh! He seemed to pooh-pooh the idea overall, including saying that my styloid wasn’t that close to my C1 on the left side. But, I do have some more testing to pursue and I’m going to try to schedule a virtual appt. with Dr. Contantino to get his opinion.
I’m sorry Dr. P wasn’t more supportive. There are many doctors who do skull based cancer surgeries where one IJV needs to be totally removed, & those patients reportedly “do fine” w/ only one IJV.
I’m glad you’re following your gut & getting some follow-up scans & other opinions. Good job being proactive & self-advocating, @tguerin18!
I’ve wondered, however, when two IJVs are healthy but compressed, if the brain doesn’t “know” they’re both there & should be functional because so many of our members who have bilateral IJV compression don’t really feel good again until both are decompressed. I recently previewed a research paper about stylogenic IJV compression which also indicated that the majority of patients in the study who had bilateral compression did fine post op w/ only one IJV being decompressed. As I said, on our forum, in general, that doesn’t seem to be the case.
There does seem to be quite a big variation in terms of how compressed the IJVs are in relation to the symptoms; some members have been very symptomatic with only mildly compressed IJVs. Apologies, I can’t remember who posted it, but I’m sure Dr Osborne was reassuring about this when reviewing a member’s scans recently and said that he considered symptoms over what the scans showed…
I’m glad that you are able to consult with Dr Costantino as well, let us know how you get on!
Thanks for sharing this… interesting. Curious how you get to preview papers written on this topic? Is that because of your involvement in this forum? That’s cool!
Makes a lot of sense. My case is more complicated because of my ear condition, too. It makes it more difficult to determine where the symptoms are coming from since I might have both.
I also wonder if your sscd symptoms disappear with a styloidectomy. I’ve read that up to 2% of CT scans show sscd - i.e., the patient doesn’t even know they have it because they are asymptomatic. Just like 4% of the general population have an elongated styloid, but it’s only 4% of that 4% have symptoms (i.e., eagle syndrome). So I really wonder if your ijv compression is causing increased ear pressure, making you sscd a problem? In other words, I wonder if a styloidectomy will treat your eagle syndrome AND your sscd, rather than getting inner ear surgery.
@TML - I think what you suggest could be a reality i.e. the SSCDS symptoms could reduce or disappear once the IJVs are decompressed & IH is no longer a problem. It will be interesting to follow @tguerin18’s case to see what positive outcomes his surgery produces.
@tguerin18 - I know the doctor who is one of the co-authors of the paper in question. Once it’s published, I’ll share a link to it.
I was told by my ENT a couple weeks ago that him and his colleagues may do a published case study on me given the HBS + ES combo. Although it’s obvious via this forum that a minority of ES patients experience both, I don’t know if there are any published research articles on the combined presentation. I’m gonna ask to be a co-author if I can since im a clinical psychology student researcher. Not sure if it would be a conflict of interest though being the case study and an author.
They also haven’t given me a formal diagnosis of either yet lol
Hey! We are thinking on the same track regarding this. I know of 2 individuals on the SSCD forum who had SSCD surgery, but the repair material (bone wax, paste, etc.) they apply on the base of the skull “washed” away over time, only to need another SSCD surgery, which I’d like to avoid because it’s a craniotomy. I’m guessing because it’s because of high pressure in the head that they don’t know they have from another condition, maybe ES. I’ve connected with one of those individuals, and he eventually was diagnosed with ES and has his styloids removed by Dr. Hepworth.
That’s awesome! I look forward to reading it once it’s published.
That’s my hope, too!
What is HBS?
Hyoid bone syndrome! When your hyoid irritates nerves or compresses vascular structures.
You can see the left greater horn of my hyoid is in contact with my carotid sinus nerve area. Giving me all kinds of nasty symptoms and has landed me in the ER multiple times.
HBS may actually be more rare than ES. There’s almost no papers on it. Since the styloids are connected to the hyoid via the stylohyoid ligaments it isn’t too crazy to think that ES is a risk factor for HBS.
Would be interesting to be a case study! 
you could do both & help with authoring too!
Wow! Interesting and makes a lot of sense given they are connected. I’m learning a lot from this forum.