I’ve had symptoms for over a year now. I believe my symptoms of jug vein compression are a result of cervical instability. But I don’t know what is causing what.
I’m confirmed JVC. I have extremely high pressures based from the catheter venogram procedure, that are ranging up to the 50s. The NIR said it’s the highest pressures he’s ever seen. So I am very symptomatic and unable to really leave the house, because when I’m upright, I have severe pressure in my head. That pressure creates brain fog, facial numbing, inability to lean forward, pressure in the back of my neck. I also have narrowing of the transverse and sigmoid sinus on both sides.
I’m afraid of having the surgery for JVC and not getting better because perhaps the symptoms were from CCI.
My question is this: does anyone know the difference between the symptoms so I can differentiate what is causing what?
Really hard to judge how many symptoms are being contributed by ES vs CCI. One thing to consider, which I talk a lot about on this forum, is that ES has the potential to cause years and years of muscles compensations and imbalances. For example, when the styloids are too close to C1, they compress the IJVs (which I suspect is what you are experiencing - I haven’t gotten to see your CT imaging). To compensate for this compression, the only way to increase the stlyoid-C1 space is to maintain a slight upward head tilt and slightly forward head. This allows the IJV to open up a bit. The problem is, when the body is in this posture chronically and subconsciously, the wrong neck muscles are being used to support the head. The suboccipitals, SCMs, and scalenes take over, while the deep cervical anterior neck flexors get weak. Deep neck flexors are crucial muscles for cervical stability. So it is possible (obviously not all cases) that CCI that comes out of nowhere may be due to chronic muscle imbalances directly caused by the styloids. And removing the styloids is the only way to start using the correct muscles of the neck. At the very least, removing the stlyoids will open the IJVs (even if CCI is not addressed). I would have to see your CT to really know how much the styloids are contributing to things though. Obviously there are health conditions and injuries directly responsible for CCI and styloids are just the icing on the cake.
So to really answer your question, this is what I think (but I am not a doctor): removing the styloids if they are problematic (directly causing IJV compression as clearly shown on a CT) is the only way forward to really know how much of your symptoms is being caused by CCI. I would personally tackle the styloids and then see if CCI gets better with the gained proper neck range motion and physio.
Thank you so much for your response. It does make sense. Who knows what caused what?
I just listened to an appointment that I had with Dr Patsalides from a few months ago. He viewed my CTA and CTV. He didn’t think my non-dominant vein was an issue at all. That is the one that’s almost Completely closed.
Since then I have had a catheter venogram, and the pressures on that side were extremely high. (left transverse and sigmoid sinus.) Head pressure is my worst symptom. It seems that catheter venogram would be painting the picture here, that indeed there is pressure, and it needs to be resolved. It seems that the right side/(large) has good flow. But maybe just losing 50%, would affect me greatly if only one side is working.
My right and dominant side has been doing all the work. And it is about 50% closed. No extreme pressures on that side per the catheter venogram.
I could be wrong, but isn’t the surgery based on what the pressures are in the catheter venogram?
I I’m working on uploading the images. I have some in my other post.
The offer of surgery isn’t always based solely on the pressures measured in a catheter venogram. Some doctors also take symptoms into account. We’ve had members w/ pressures on the higher end who weren’t debilitated by their symptoms, & others who like you, had a lower amount of occlusion but symptoms that kept them bedridden.
I think that your conclusion regarding the fact your right IJV is 50% occluded & doing all the work is likely a huge contributor to your symptoms is correct. It may even be that once the right IJV is decompressed, the transverse & sigmoid sinuses might work a bit better as well, though that can’t be guaranteed.
I have surgery next week (left styloidectomy) and I have never gotten a catheter venogram before! Sometimes the IJV compression shown on CT plus the symptoms of head pressure is intuitive enough for some surgeons that the IJVs need to be opened up.
The ES vs CCI question has been debated before, and also ES vs other health conditions, and unfortunately there’s not always a clear answer! Sometimes it’s a matter of having the surgery, and see what symptoms remain, sometimes more than one surgery is needed…we’ve had some members come here who treated the CCI first with a neck fusion, and that’s really ramped up the ES symptoms, but others sometimes feel that after ES surgery they feel more unstable (but @TML@s theory of weak neck muscles might explain that?) Either way, it’s not a bad idea to see the ES surgery when you have more than one thing going on as not an instant cure, but a step along the journey, & that PT or other surgeries might be needed.
I don’t have CCI, nor C1 involvement, but I did have horrible head pressure from bilaterally compressed IJVs, I didn’t ever have a catheter venogram- my doctor was considering a LP to check pressure, but I wouldn’t have wanted that- when he saw the compression on the CT with contrast I had, he was happy to go ahead with surgery, & it was successful for me, I was very blessed…
Obviously we’re not doctors on here, but it does seem likely that having one IJV almost completely closed & the other 50% obstructed would cause horrible symptoms & that surgery should help!
Thanks so much for posting this. It really is a wealth of information. I will send you my images.
With your carotid compression, do you have a pulsating jugular in your neck? It makes me wonder if that’s what my problem is too.
The pressure and compressions from other things in the neck I guess could be causing that too?
The pulsating of the IJV is likely separate from the carotid compression. I think you’d need a lot of ICA compression to interfere with IJV outflow. So much ICA compression that you’d likely stroke. The carotids are not as malleable as veins, so it’s difficult to compress them significantly. However, they are very sensitive to mechanical irritation/pressure and such can cause vasovagal responses (similar to carotid sinus hypersensitivity).
I had the opportunity to review @Luckee7 ‘s imaging. See attached annotated images.
At the level of C1, both IJVs are compressed against C1. This compression is solely by C1. No IJV compression (at any point in the full length of the neck) is caused by styloids / calcified stylohyoid ligaments. Note that the right IJV is the dominant (much bigger in diameter) IJV.
At the lower level of C1, there are calcified pockets of stylohyoid ligaments bilaterally that are in direct contact with the ECAs.
Further down at the level of the hyoid, the left IJV becomes compressed between the left ICA and left SCM. Most of the compression seems to be due to the ICA.
I have attached 3D models showing measurement estimations of the normal length styloids and measurements of the calcified pockets of stylohyoid ligaments bilaterally.
Reminder that I am not a doctor nor radiologist. I hope this helps!
Thank you so much for looking at my images. It looks like I’ve got a lot going on. It may explain why my symptoms are so severe.
As of now, I’m in hopes of finding someone who will treat us on my side of the US. Inquired about Damrose. I want to make sure I’m making the right choice with physicians.
I’ve been told that my transverse process is the main concern. Does anyone know if Nakaji does C1 shaves?
Absolutely, Dr. Nakaji does C1 shaves. Dr. Damrose is an extremely experienced ENT skull based surgeon, & has done vES surgeries w/ good outcomes so pursuing an appt w/ him is a good idea, too.
TML marked up my images, looking like he found a few new things, that I, nor any physician has yet to see. He included information on carotid arteries, and what appears to be calcified stylohyoid ligament’s compression to carotids.
The next day when I called Nakaji‘s office, I was told that Nakaji found no compressions. Now I’m not sure what that actually means. It could mean he didn’t find compressions severe enough for a surgery? Or severe enough for my symptoms? Now I’m thrown off!
I’ve been told that I’m a completely occluded on my non-dominant side and 50% occluded on my dominant side by a renowned surgeon.
Nakaji also noted that he found a calcified and thin styloid. Not sure why he included that piece, but perhaps just letting me know I have thin bones. {does anyone know why he would list that? Would that cause bone pain?.} anyway I thought that was interesting that he included that in his 2 sentences of feedback.
And now I am in a position of complete uncertainty. And I’m not sure if I’m chasing the wrong thing. I respect Nakaji‘s opinion. This was all based on my CTA. (not my catheter venogram).
I have a lot going on with the stenosis of deep veins in my head on both sides. Perhaps Nakaji didn’t see this? Not sure how much time he spends on going through the preliminaries.
I spent a good majority of the day laying down, unable to work, homebound, and unable to do 90% of what I did before all of this occurred.
My symptoms are completely severe. My manometry report calculated very high pressures. What else would cause high pressures from that report if there were no compressions?
I’m sorry that that Dr Nakaji couldn’t see compressions; it’s so tricky, we have had other members who have VES but Dr Nakaji hasn’t felt they would benefit from surgery, we do suggest that it’s worth getting more than one opinion. How has it been left with Dr Nakaji; is that it now, does this mean he won’t see you in person or do surgery?
I guess you’ll have to see what Dr Damrose says, you could have an appointment with Dr Osborne too, I think he does virtual appointments and has diagnosed lots of members, he doesn’t do C1 shaves so might not be the best bet for surgery if it appears that the C1 is causing most of your compression, but he is happy to give his opinion without putting pressure on a patient to have surgery with him?
I can’t remember if Dr Costantino does virtual consults, if he does it might be worth another opinion?
It’s very strange, I’m sorry that Dr Nakaji wasn’t more helpful, sending you a hug
@Luckee7 - I’m wondering if you could appeal Dr. Nakaji’s decision since you mentioned he based his opinion solely on your CTA. Did you also send him your venogram w/ manometry results & any other scan info you have w/ your original request for an appt w/ him?
In my non-medical opinion, with what we can see in your imaging & with the symptoms you have, I feel very certain the two are closely related & getting your styloids shortened & IJVs decompressed would make a big difference in how well you feel over time.
Thank you so much, Jules.
I’m going to return a call to Nakaji’s office tomorrow. I will ask if they saw the catheter venogram that I sent including manometry report. I’m suspecting he did not see it because he would have seen my high pressures.
Spoke to my neurointerventinal radiologist today for 45 minutes and he answered many questions. He made a good point by stating if there are no compressions, why the extreme high pressures in the left IJV? What would cause that?
I suspect that will not change my status but it’s worth a try.
Hi Isaiah, I agree (as does my NIR) that my symptoms correlate with the high pressures, and particularly the non dominant, occluded left JV. That’s where all the high pressures are located even though the non dominant gets dismissed most of the time, and most surgeons operate on the dominant.
Praying for a resolution soon to this. Thanks so much for your comments and support.
@Luckee7 - Please let us know if Dr. Nakaji is willing to review your manometry numbers or review them again in case he glossed over them too quickly the first time & what he says if he does & especially what his answer is to your IR’s suggested question.
