Hi blossom,
Did you ever get a CT Scan? You mentioned results of an ultrasound. CT scan without contrast is the gold standard for diagnosis of ES.
My pain when up and down neck to ear also and quite excrutiating at times. It would come and go too. I call them flairs and who knows what triggered them. I think sometimes it depended on my sleep position and pillow and if I slept in a bad neck position, it would aggravate more. I also think the level of inflammation int he body. I learned early in my first pain flair in 2015 that what did work to knock down the pain was dexamethazone which is a steroid. Interestingly this appears to be helping COVID patients who are pretty ill. I was given loading doses (higher at first) and noticed a change within 24 hours.
In January when I had one of my worst pain flairs and finally diagnosed, I went in and had a combination of injections. Steroids and nerve blocks. Once all this kicked in, I was mostly pain free for several months till surgery. Pain meds barely took the edge off my pain and upset my stomach. Everyoneās body is different and responds differently but the steroids I think help calm the area and nerve blocks give some immediate relief. Good luck with your appt today. Hang in there!
I really appreciate everyoneās help here over the past few weeks. I have learned a lot about the nerves in my neck. However today I was NOT diagnosed with eagle syndrome and my doctor has basically ruled it out. Unfortunately I had feared this happening. This is my fourth or fifth potential diagnosis over the past three months. Once I get comfortable with one, some other test reveals something new. I am going to share my story anyway just in case it helps someone else.
My ultrasound found that my jugular vein is compressed on both sides of my neck but it is not from my styloid process. It is only slightly elongated. My doctor suspects it is muscles in my neck āwrapped upā in the vein and also my nerves, causing pain. Weird that it is on both sides because I only have this pain on one side. I have had āpanic attacksā for years which my doctor now says are not at all related to anxiety but due to my veins not functioning properly. I also get dizzy, feel throbbing in my head sometimes when I exercise and get migraines/headaches frequently. He thinks this is all due to the same condition, TOS, thoracic outlet syndrome.
I am now to wear a neck collar for periods of a time, try using bio freeze on the muscle, continue my pain pills and get my intracranial eye pressure checked to see if there is pressure on my optic nerve. I hope not. If none of these things work he or a vascular doctor will try to do a nerve block and/or do surgery to āreleaseā the muscles (assuming it is that??)
My jugular vein flow is at 166 centimeters per second and it is supposed to be around 50, he said.
I am very discouraged, but my doctor said I should be glad to have this diagnosis instead of eagle syndrome because the surgery and treatment for this will be much less involved for him and easier recovery for me. He said he is confident there is a scientific reason for my pain and heās going to figure it out. I trust him. But it has been a long three months and I just want to feel better.
Thanks so much to everyone who has helped me along the way here. Iām sad I wonāt be able to join this community just because I donāt know if there is anything similar for unexplained āTOSā or whatever it is that is wrong with me. I wish everyone luck!!!
So sorry that you have to begin pursuing another diagnosisā¦but I hope that the doctor is on the right path this time. Weāve had a few members diagnosed with TOS too.
Glad that weāve been able to help you on your journey a bit- feel free to still pop in & let us know how youāre getting on, weād like to know.
Thinking of you 
After another month, Eagle Syndrome has been put back on the table as a potential diagnosis for me.
I tried a few other things recommended by Dr. Hepworth and they didnāt work. Now he has recommended a cerebral angiogram to map my veins in my head and neck to see where exactly my jugular vein is compressed. The neuro vascular doctor who will do the procedure said a potential cause of the compression is my styloid, but he wonāt know until he does the procedure. The CT scan only showed slight elongation of my right styloid (the side Iām having so much pain.) He seemed to think the area where the vascular ultrasound showed my vein is compressed, is actually result of something pinched āupstreamā (closer to my brain) and it is not actually pinched that far down my neck. Other potential causes are CSF leak or unexplained narrowing of my jugular vein by my brain.
I am really scared for this procedure as it says in the brochure he gave me that the risk of stroke is āless than 1 percent,ā I also have to be awake for it which is not fun. However I am desperate for relief so I said Iād like to move forward with it. Has anyone with Eagle syndrome been diagnosed with this procedure or had this procedure after diagnosis?
Yes I have had all of the above (directed by the same surgeon as you) and am sorry for your long journey. 6 weeks ago I had the 3D CT with digital subtraction for all of the arteries and veins in my neck and brain with provocative positioning (was awake) followed by a balloon venoplasty which gave me good relief! The test is relatively painless - they keep you very comfortable and as you already read very low risk. You can direct message me if you have any questions!
That is really good to know that itās not too uncomfortable. Iām very anxious about being awake but I also know that I need to do it to get more answers and hopefully a plan for treatment. May message you as it gets closer! Right now waiting for insurance to pre approve and then schedule. I know Dr Hepworth is an extremely gifted doctor and I trust him completelyā¦ I feel so lucky to have found him quickly (my partner also sees him.) itās really helpful to know Iām not on this journey alone and others are having similar experiences. The doctor doing the angiogram does not have the same wonderful bedside manner that Dr Hepworth has but Iām sure he is more than capable!
Itās not just the length of the styloids which can cause symptoms, but the angle & width as well. It could be that your styloid has grown at an angle & is enough to compress the vein between it & the C1 process.
Iām sure that the scan will be fine & should be good for a diagnosis. Let us know how you get on!