Okay…I finally had my procedure to see if surgery would help my diagnosis of vascular outflow obstruction. Negative. Dr. Patsalides, who is a very well respected interventional radiologist performed it and told me not to proceed. In my situation, all 3 top surgeons who I consulted with wanted to perform a jugular decompression along with a styloid removal. On imaging and on my reports, C1 seemed to be at play. The last surgeon is the one who recommended the venogram to help get more answers. The other two did not offer this. I was given the option of a C1 shave when I expressed my concerns of this. However, I was not comfortable as he is not a neurosurgeon and this would only be done in conjunction with the decompression and styloid removal which now is deemed unnecessary. I had a feeling going into this and had set up a consult with an experienced Neurosurgeon who deals with the cranial cervical junction specifically for CCI/AAI. The procedure was not pleasant, but so glad I decided to do it. Dr. Patsalides feels these surgeries still are experimental (as these Drs state as well in the webinar) and there are so many unknowns with many still not getting resolution. I do believe that surgery can help many but I still feel that this procedure holds the missing link for many, at least for me. Once I get the report, I can share. Onward I go!
I’m glad you have gotten an answer that has given you a different direction to turn since you were tenuous about the styloidectomy/IJV decompression. Dr. Patsalides is correct. The vascular decompression surgeries are still somewhat experimental & not everyone gets the desired outcome.
As far as styloidectomy goes, there are quite a number of symptoms that are caused by elongated styloids so some of our members w/ more complex health challenges have elected to have theirs cut back as the styloids were a definite problem for them. Once that was done, they could begin to “peel back other layers of the onion” as it were & begin to resolve what else was going on. Since you’re a super researcher, I know you’ll make your next steps count as much as possible toward your recovery.
Looking forward to reading your report from Dr. P. 
I have always assumed that brain fog and cognitive difficulty was caused by jugular vein compression, but is it possible that it is caused by cranial nerve compression alone? — especially something like the vagus nerve which has so many functions.
In the latter case, perhaps a negative catheter venography shouldn’t necessarily rule out something like a styloidectomy if the cranial nerves are being compressed by the styloid.
Kjetil Larsen had written a very skeptical article on overdiagnosis of CCI/AAI which I thought was interesting:
I tend to be very skeptical of him however. I have hEDS and was diagnosed on multiple imaging with CCI/AAI previously. In addition to an EDS center. My main goal of this procedure was not getting an unnecessary surgery. As we all know there are many who do not get better or go for revisions. Dr. Hepworth ordered this imaging. He suspected something more as I did too. I am not willing however to proceed with his proposed surgery. The other two surgeons did not even bring it up. The whole point of my continued posts is to advocate for yourself and question, question, question.
Does Patsalides have you move your head into flexion during the venogram?
Yes, you have to provoke. That’s how he gets his measurements and can show compression. I do still plan on keeping my scheduled follow up with Dr. Hepworth to go over the report and I have a scheduled follow up as well with Dr. Constantino to get his input.
I’m glad that you’re getting the right info to make the best choices for yourself, and hope you get some answers with the report and follow-up appts.
Thanks for posting this @Bowser , a really interesting article, I’ll post it in the research papers article too!
I was recently diagnosed with severe bilateral internal jugular vein compression. My c1 is abnormally big on both sides and is compressing the jugular veins up against the styloids. I have went through a year and a half of absolute hell. My only symptom being extraordinary head pressure that is constant 24/7 but the severity of it comes and goes in waves. It’s also morphed into head fullness and squeezing of my entire brain it feels like. I can’t bend over cus it feels like circulation is getting cut off to my brain and my head immediately fills up with pressure. Sitting straight up my head builds up with pressure and tightness and laying down as well in every position. I can not get comfortable for anything in any position. Out of a ton of MRI’s, mrv’s, mra’s and CT’s, blood work of all kind, the only thing that was found was slightly elevated opening pressure from 2 spinal taps (30 & 28) and the bilateral compression just recently found by Dr Patsalides in NY. I’m scheduled to see Dr Lo in the same building as Dr P this week to talk about surgery. But none or at least very little of this makes sense to me. Has anyone else experienced this head pressure and squeezing that I’m talking about? Can this really be from jugular vein compression?
I have similar issues with head pressure but also chronic head pain. I have compression by C1 process and my right collateral vein is restricting blood flow at base of skull. It’s not the jugular’s that are the problem, but it’s affecting the jugular’s. I have met with Dr. Lo. I’m not sure if I will set another follow up with him or not.
Hi & welcome!
I had bilateral internal jugular vein compression- my styloids were compressing them but no C1 involvement- which caused horrible head and ear pressure, so I can sympathise with you! When the jugular veins are compressed, other veins can take over as @Brandy said, but it’s not always enough so the pressure builds up in your head- known has Intracranial Hypertension. If you look that up & you’ll often find some very weird symptoms; sucking sensations, dizziness, off balance/ drunk feeling, feeling like you’re wearing a hat, feeling like you’re shorter/ closer to the ground than you are…
There’s lots of info in the Newbies Guide Section here ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
You’re seeing very good doctors, so hopefully they’ll be able to help you…
Thank you for responding. I know there can be an array of crazy symptoms but I only suffer from debilitating head pressure and and head fullness. I’ve pretty much been bed ridden the past year and a half. The reason I asked is because I havent seen or read of anyone who has dealt with this level of head pressure and only really this symptom. My opening pressure from my spinal taps were only slightly elevated and even the reading from the catheter venogram/manometry was basically normal. Dr P just saw when he did the balloon occlusion test that my collateral veins basically did nothing and pressure immediatly built up. Idk. I just want this to be the answer so bad but I’m trying to make sense out of the hell I’ve been through the past year and a half in and out of hospitals being debilitated trying to figure out whats causing this immense pressure in my head and only a little of this makes sense to me, the majority of it does not. But this is the only thing that has been found out of all of the testing I’ve had done. I guess I have to just see if I get this operation and it helps. Thanks again for responding.
@Stevesmith - I’m so sorry your symptoms have been incredibly bad. Getting the blood flow into & out of your brain normalized may be just what you need to begin recovering. I must say that even with surgery, it will take time for the symptoms to go away as that process seems to happen gradually though you may notice some immediate positive results after surgery.
This feeling of “head pressure”, or a feeling of head fullness INSIDE the head, is pretty much exactly what I experienced with my TOS-CVH and completely went away after TOS surgery. Sometimes, it would feel like there was liquid sloshing around inside my head. I don’t know if you can relate to that.
I do have headache with Eagle syndrome now but it feels very different from my TOS headache. This headache I feel on the surface of the head rather than inside the head.
You can check my previous posts about TOS if you are interested in investigating that.
Hi SteveSmith,
I feel like I know exactly what you’re talking about! I have been having intense, extreme head pressure with unprovoked, sudden blood pressure attacks and even high heart rates for 1 and 1/2 years when this all started back in April of 2020. My head felt like someone was blowing up a balloon inside of it about to pop!
I had many many many tests, from MRIs to MRAs to CT Venogram to pretty much you name it, although no one ever did a CTV or a CTA of neck, which is what I think is important to do and would reveal possibly the issue, and supposedly none of those tests showed any real issues.
After that year and a half, The pressure symptoms in my head and even the blood pressure spikes greatly increased to almost nothing, but not quite, but I think that possibly compression of the vertebral artery at the V4 area has been possibly causing the pressure in the head, which was causing feelings of passing out (although I never passed out thanks to the Lord!), But because no one did the right test, in my opinion, I think what happened is that intracranial hypertension finally caused a burst and that is what caused me to have a slightly low opening pressure upon lumbar puncture when really it was the pressure in my head from the compression, all along, causing all my issues of feeling like I’m going to faint, being woozy, having brain fog or just a confused like feeling in my head, and the extreme blood pressure spikes that would happen out of the blue which would cause me to feel like I’m going to pass out. About a year after this all started, I additionally developed tinnitus 24/7, which feels pulsatile and whooshing.
I eventually talked with a chiropractor after many many doctors and specialists could not figure out the problem and that chiropractor told me that there’s an issue at the V4 area where the vertebral artery is being pinched, sort of, and until that area is unpinched, I would continue to be on this roller coaster of symptoms. Made sense to me and so I found a local chiropractor to do some adjustments and I felt much much better but I think possibly an over-adjustment caused everything to become haywire again and so now I’m back to dealing with all those symptoms I described above. The good thing about this local chiropractor though is that he noticed the styloids being long. So I’m not sure if the styloids is what was putting pressure on the V4 area or not, but I have a virtual telehealth appointment with Dr Constantino for February 8th and should learn his thoughts on this whole thing. Even though I was making progress with the chiropractor and pretty much almost all my symptoms were gone except for the tinnitus, which he said is usually the last to go away, I think he overcorrected All those ugly symptoms returned, and one of the moderators of this forum said that she sees that quite frequently or hears that quite frequently from other members.
I should back up a bit and explain that after the year and a half of intense pressure in my head with all the blood pressure attacks to the extreme, I think after the burst happened, possibly a CSF leak occurred and maybe that is why I don’t feel the pressure in my head like I used to. Hopefully I don’t have two problems now as a result of it. All because in the beginning I couldn’t get anyone to do a lumbar puncture when the pressure was great!
So sorry to hear someone else was going through what I’ve been through because it has been a very difficult road. I pretty much never left the house for the first year and a half maybe 12 times because I never knew when my blood pressure would get so high that I felt like it’s going to pass out so I couldn’t really drive, etc. I hope you are able to get answers and share them on this forum so that we can also be helped.
After hearing the member after you reply about her situation that her doctor doesn’t feel she should do the surgery, I’m feeling a bit confused as to whether I should go through with surgery if that’s what Dr Constantino recommends. Maybe someone else on here can comment on especially Isaiah or Jules.
I will try to keep you in prayer that you get direction and healing soon!
@GodisAWESOME - Whether surgery will be helpful or not depends on what’s going on in your neck/skull. I assume you’re talking about @Brandy. She’s had a lot of testing done & has problems that are different than yours. Once your diagnosis is more clear, you should be able to make an informed decision regarding whether or not surgery may help you. I believe it will because your styloids are so long.
Thanks, Isaiah. Yes, I was referring to Brandy’s post and also that you were saying that vascular decompression surgery is still experimental and even though I don’t know for sure that’s what my situation is I suspect that it could be, just not sure what’s compressing it. I was told to see one see two area could be involved by the chiropractor who looked at my images in 2020 and said that the artery is being pinched. No one else has told me this, so I’m not sure what he could see that nobody else could see. I just want to make sure I make the right decision because I don’t want to go through surgery for no reason. Hopefully I will have more answers when I get to talk to kind of Lord willing, Dr Constantino February 8.
As always come and thanks for your words of wisdom.
That was supposed to say the C1 C2 area above.
I thought it was funny that C1/C2 was spelled out. Made me laugh, but I understood what you were saying. 
I wonder if there is a CSF leak, which two of my doctors think is the case - but a Neurosurgeon does not - if that could be contributing to any of my symptoms and if Dr. Constantino understands about CSF leaks and how that dynamic could figure into the symptoms or any possible surgery for ES. You know?