Thank you so much for the response! I really appreciate your help. 
I am definitely learning as I go. Do you mind me asking if you had a venogram of the sinuses in your brain? Did your venogram also look for signs of vascular ES? What were your final results from having these tests? I see many ppl. talking about the velocities in their IJVs. Is the venogram where they receive these numbers? My ultrasound came back stating that everything looked normal, but maybe Dr. Hepworth will think differently when he reviews it. I know I have bilateral SPs measuring around 4.5 and finally felt a sense of relief thinking vascular ES may be the reasons for my debilitating issues these past 9 years. I was very confused when he referred me to have the venogram of the brain done. I think he is absolutely amazing and I trust him, I just am trying to figure out what it all means. Is it possible for the SPs to cause issues in these brain sinuses? Thank you for taking the time to help me!
Yes I have had an angiogram/venogram of all the vasculature in my head and neck. Stenosis was identified for bilateral IJV measured with pressure gradients above and below the styloid / C1.
The velocity measurements are taken with the Doppler US, not the venogram (that is pressure gradients) Was your US done in different head positions? This is important for many the elongated styloid does not compress the IJV or other vasculature unless in rotation and/or slight chin tuck.
It is important to look at the vasculature in the brain as many of us who have vES also have other issues higher up in the brain that has gone undetected. This has been part of Dr. H’s learning curve over the lat 4 years as he continues to incorporate all systems potentially involved with ES.
Hope this is helpful!
Thank you again for all your help. I just want to feel better. I honestly don’t know how much longer I can keep living the way I am feeling. Your support means everything to me. I am praying that Dr. Hepworth will be able to find answers for me. No, my ultrasound was not done with different head positions. It was done by the radiologist office that Dr. H had referred me to so I assumed they knew how to do this accurately. Does the US always pick up on ES or can the venogram still help in the diagnosis if the US comes back normal?
Do you mind me asking if they found any blockages up higher in your head and how that was dealt with? Dr. Hepworth stated that if they found a blockage higher up in my brain that this could be stented. I am curious to know if ppl. always have a stent placed or if ES surgery can ever be done instead of the stent. I am still trying to put all these pieces together.
I am so glad that Dr. H is checking everything out for me. I feel truly blessed to have found him and to be his patient. Do you know if it matters who does the venogram? He has referred me to either Dr. Hui or Dr. Kaminsky. I would love any feedback you might have on these two doctors and who I should travel to see. I have to travel either way and just want to find answers. Thank you again for taking the time out of your day to help me better understand all of this!
The venogram looking at the cerebral vascular structures is also useful to see as if the jugular veins are compressed other veins can take over to a point & become larger than they should be.
The venogram should pick up any compression even if the ultrasound doesn’t, but if possible you could ask about different head positions as JustBreathe says. If you’re seeing his team for that hopefully they’ll have more experience than the radiologist who did the doppler, but hopefully someone who’s seen them can give you advice on that!
If you do have jugular compression from the styloids, getting the styloids removed is the best way to treat it, just stenting doesn’t really help. Sometimes stenting is needed as well, if the jugulars don’t spring back, or venoplasty can be done which is less invasive. I had bilateral jugular compression, just removing the styloids was enough to make a massive difference to symptoms, so I didn’t need stents. I hope that you’re ‘lucky’ too!
Thanks for the response, Jules! I am glad to hear that the venogram and pressure gradient testing are part of the ES protocol and that I am hopefully still on the right track. I will make sure and let Dr. Hepworth know that the radiologist did not move my head in different positions when doing the US. As far as seeing someone for the vemogram, Dr. Hepworth suggested I see Dr. Hui or Dr. Kaminsky. He said to see whoever I can get in to see the fastest. I have to travel for either or these doctors, so that isn’t really an issue. I am just hoping that some ppl. can join this conversation and help me to decide which doctor they think is best. To be completely honest, I feel like I am dying and I’ve just had this for so long that I have a strong fear that this may never get better. I am just worried about how long it is going to take for me to see one of these experts for the venogram of my brain sinuses.
It appears from the appointment notes that Dr. Hepworth is concerned about IH. He noted that he wants the venogram of my dural venous sinus, left sigmoid and cavernous sinuses. He said if a blockage is found in these areas that it could be stented. This is why I am not sure if ES is even on the table anymore or if he thinks the issue is solely potential blockages in my brain. This is why I am trying to figure out if there is a connection between ES and having blockages higher up in the “stream” from the jugular vein.
I was expecting/hoping for him to say that the styloids are compressing my jugular veins and the fix will be to have them removed. It wasn’t that clear cut, however. I am just hoping I can get into see one of these specialists for the venogram and God willing that I am still moving closer to feeling better. I would appreciate any other info/insight you might have. Thanks so much Jules!
From what I’ve read on here, Dr Hepworth is just very thorough, & wants to rule out any other possibilities before he goes ahead with surgery for ES, so just because he’s doing this testing it doesn’t mean that he won’t offer you a styloidectomy if it’s the right thing to do. Other members have been through this like you. THere’s a couple of discussions with people’s experiences & a link to a research paper JustBreathe posted before which you might find interesting…
There is a mention in the second one about not being checked with head in certain positions, so if you get to see one of these doctors as we’ve said something to ask about.
From what I’ve heard on here recently, Mr Axon who did my surgery in the UK (& is the most experienced ES surgeon that we know of here) now seem to be following a similar protocol of extra vascular testing before recommending a styloidectomy.
All of the imaging is helpful in making the diagnosis, which may be more than just ES! One imaging does not rule out treatment for the other in most situations. Hepworth is very thorough this way. I did not have any stenosis in my brain thankfully.
Both Hui and Kaminsky are great, i agree to see whom ever you can get in first with to get things rolling. I have heard that Johns Hopkins is running a bit slow and that Hui is moving his practice soon though.
Hang in there! We can all relate to the misery this brings but you are not alone and you will get through this. It is a complicated process though and it takes time to heal once you start having interventions. Dr. H will see it through to the very good end for you, you are in excellent hands and a hugely caring heart.
Thank you, Jules! I will definitely be reading this paper. 
Thank you so much! Your sentence “Dr. H will see it through to the very good end for you” made me cry. For the 1st time in 9 years I feel like there may actually be a diagnosis and a solution for my symptoms. I feel like I am finally with a Dr. who understands and wants to help. In order for him to do this, I need to have patience and strength until then. I am comforted just knowing that a there may be light at this very long dark tunnel. I want to be a mom and I just can’t imagine it with how very awful I feel. I am praying for much better days ahead.
Although my neck was not moved into different positions during the US, it seems as though my numbers may still be high. I haven’t heard from Dr. H on what he thinks about the results of the US. I have found out that my numbers range from 37.2 cm/s-104.4 cm/s. I have heard that anything over 50cm/s is high. Do you know if this is true? I would greatly appreciate your input on this. Thanks for all your help JustBreathe!
Dr. H’s normal cut off for US velocities is indeed 50 cm/s and yours appear to be well above that! Crazy to be happy about an abnormal finding….welcome to the beginning navigations in this wild medical wilderness. We are all here to walk with you and Hepworth is the master chess player in this. Sometimes all there is to do is one breath at a time…and that is just fine, your breath will pull you through 
@Frankdux
I am sorry to hear your surgery was cancelled, that is a big nut to swallow. Did you do any provocative positioning with the angiogram? Often that is the true test. Dr. H works with those who allow you to move your head with testing, maybe something to ask him about when you see him.
Hang in there, let us know how your visit goes!
Yes. I did the different head positions. None of this makes sense. I feel like test has to be wrong.
I’ve talked to another person who has had multiple angio’s, first one normal, second one showed the stenosis.
Will see what Dr Hui is going to do next week. I know dr Hep refers out to dr hui too, so if these guys can’t figure out, I’m SOL.
There is no question it is a complicated area to diagnosis and treat. In my experience angiogram testing can be influenced by several factors, most of which are not well documented, but can include medications, barometric pressures, concurrent CSF leak etc.
Great you are seeing Hui next week! I have heard nothing but good about him as a brilliant, kind and caring doctor. Hepworth does refer to him and that says a lot. Between the two you will have a plan one way or another - don’t loose heart! Both of these doctors work with the most complicated cases (mine included) and have a deep bag of resources. You just have to bring patience and perseverance to the table for them to help you.
Stay the course, you are in the best of hands! Let us know how next week goes.
Thank you so much JustBreathe! Your right, it seems odd to be excited to find an abnormal finding, but after all these years this is the first time something is starting to make sense of why I feel the way I do. I am so happy to hopefully finally be on the right path to finding answers. I’m hoping to be seeing Dr. Hui in the upcoming month to find out more. Now that I’m hopefully on the right path, I’m praying I can eventually find relief and some normalcy again. You had vascular ES, right? Can I ask what your symptoms were and how much improvement you’ve had since having your styloids removed? Thanks for helping guide me through this!
@Eagle1
I am happy to help in any way, this is a rough time and having people to hash through things helped me tremendously!
My vascular symptoms included blurred vision, brain fog and light headed with looking down / chewing crunchy foods (stopped shewing gum completely). I was also immediately symptomatic when put into a pre-manipulation position for my neck, needless to say i did not have that treatments. I would also have a barrow reflex when i was sleeping if my head fell into rotation. These symptoms are 90+% resolved. However my situation is greatly complicated by a cranial and spinal leak so my journey is not over.
Great you are getting in to see Hui. Lmk if there is anything else i can help with 
Hi Eagle1, I see Dr. H as well and had all of the same testing. My ultrasound was 100 cm/s both sides, my eyes did not show high pressure. My angiogram/venogram came back “mostly normal” aside from a bit narrow transverse stenosis, and something else narrow in my head, however, Dr. H did not seem to think this means I don’t have eagle syndrome. He said it can be dependent on head position and other things. Have you talked with him about any treatments that might relieve your symptoms? I’m on a daily blood thinner that has taken my pain from constant to only occasional. The fact that the blood thinner has helped, has shown us something is likely compressed. I am moving ahead with surgery to remove my right styloid October 13 with Dr H and Dr Annest (his office does the ultrasounds.) Dr H said he’s 70 percent sure it will help, though I may need the blood thinner for life. Hope you find some answers soon! Reach out if you’d like to chat.
Also, my understanding is blockages in your head needing a stent would be separate from anything going on with your styloid, but both can be present, and it’s good to know if that’s going on because treatment would be different and symptoms very similar (high head pressure etc). The stenting would be done by the neuro interventional radiologist Dr Hui or Dr Kaminsky (I saw Dr K for my angiogram.) Sometimes, with eagle syndrome, if the styloid is removed, and the vein still doesn’t open, they will “balloon” the vein. Dr Annest said this is what they will do if my jugular doesn’t open on its own after surgery. Hope this makes sense!
Dr H is very thorough, it took me a year to get to the point where he felt confident that styloidectomy would help, as I went in with throat pain and we tried all the treatments for tonsillitis, blocked salivary gland etc. I didn’t even realize at the time my headaches previously diagnosed as migraines were related, he made that connection. For a bit he considered thoracic outlet syndrome as a diagnosis for me and had me try wearing a neck brace; it didn’t help so we moved on. We’ve also explored that my jaw muscles are making the issue worse and he’s had me on muscle relaxers (which help tremendously.) It was a long road, but he never gave up on my case and always BELIEVED ME when I felt something was wrong. all of the medications he’s had me try, have helped, amazingly. You’re in good hands! Patience is key though I know it is so hard.
Thank you for your advice & input blossom; hope you’ve been okay through the summer while you’re waiting… 
Hi blossom! Thank you so much for reaching out to me! I’m so glad that you found relief with the blood thinner and plan to have surgery soon.
I have yet to find a medication that helps me. When I last saw Dr. H we did not have my ultrasound results back yet. However, my ultrasound was done at the imaging facility where I had my CT done at. There were 5 measurements for both the left and the right jugular veins. 3/5 were above 70 for both sides. I’m curious as to why you had one measurement and I hade 5 for each side? Do you know why this would be? Although I have not been able to talk talk to Dr. H since having the ultrasound, I spoke with one of his nurses who stated that anything over 70 was definitely too high. I’m still confused by having multiple measurements and others seeming to have one measurement. I will be seeing Dr. H again on the 17th after I’ve had my venogram completed. I’m so nervous that the venogram will not show any compression and that I will be back in the place of looking for answers to why I feel the way I do. My husband reminds me that we will not be at this place of unknowns because the US numbers were high etc. It helps me to hear you say your venogram came back “normal” and that Dr. Hepworth still found surgery for ES relevant and very likely helpful for you!! I’m hoping that Dr. H can place me on a blood thinners my next appointment with him. I’m so glad to hear it’s helping you! Thanks again for reaching out to me!
~Meghan
Hi blossom! I just saw that you sent another message! Thank you so much for all the help and info. I agree with you about being in good hands. I feel so blessed to be under Dr. H’s care! For the first time in 9 years I don’t feel alone with all I am dealing with. Such a blessing!