I had a telehealth appointment with the neuradioligst and ENT that I have seen in July and who had ordered the imaging that found my Jugular vein compression. The NR doesn’t think my symptoms are related to the compression. He mentioned CSF hypotension on my report, so he believes it could be a possibility of having a CSF leak, even though I don’t have severe headaches or brain sagging. My upright time is very limited and feel very unwell if I am. I do get pressure in my head and neck. I have been having thoracic and lower back pain as well. I have had very sporadic leaking from my nose in the past and one time recently. I have severe spinal stenosis, degenerative disc disease and osteophytes in my cervical spine. I have had four epidurals in my cervical spine. These are risks factors and have suspected that it could be a possibility? I’m not sure if it’s cranial or spinal. I still think the compression is an issue. This is all so complicated and confusing and overwhelming. He advised that a LP should be done to check my CSF pressure. He is going to talk to some colleagues on Friday who are involved with the Mayo Clinic. I may undergo additional testing at some point. In the mean time, I’m very unwell and stuck in my bed most of the day. I have to come to a place of acceptance that this is my new normal. I know it’s going to be a difficult journey to figure out why I feel so unwell. I’ve been through so much already in my life. I have PTSD from domestic violence, near death car accident, addicted child, medical PTSD…it’s so hard, but I have to continue this fight for my health. I see a counselor via telehealth and am a pain management patient, but this really SUCKS. It’s so hard to want to wake up in the morning. Not looking forward to the holidays.I hope everyone is doing well.
I’m so sorry that you’ve not had any help following your telehealth appt, and are suffering so much…
We’ve had quite a few members who’ve had CSF leaks because of pressure from jugular compression, which forces the leak in a weak spot, as I’m sure you know, so very frustrating if this possibility wasn’t considered!
The Mayo clinics don’t seem to be very helpful with ES patients unfortunately, but it may be that if you can get testing done to confirm whether you do have high or low intracranial pressure, then that’s a step forward…in the meantime, would they be willing to be referring you to someone else with more ES experience, are you able to travel to see someone else if you can get a referral? Dr Hepworth is very good with VES patients, but not taking anyone new on at the moment, Dr Hackman in NC while not a vascular surgeon has helped lots of members with ES and is very knowledgeable…Dr Cognetti will look at scans and does telehealth appts.
I’m glad that you do have a counsellor you can talk to at least, and keep fighting for you children if not for you…sending you a hug and praying that you can get some treatment soon 
The NR basically said I didn’t have Eagle Syndrome but I do think it’s effecting me. I have sent my images to Dr Fargen. Have a telehealth with Dr. Patalsides in January. I have an appointment with Dr. Annino in December. Trying to get other opinions but it’s obviously so confusing, complicated and exhausting. Having to wait for care is just hard when you are feeling so crappy. I know everyone can certainly relate. 
There are a some people who have IJV compression caused by either C-1 or muscle, nerve, blood vessel, or scar tissue w/o styloid involvement. Since you have elongated styloids & vascular symptoms, it’s most likely the styloids are contributors thus, I’d say you do have ES.
I fully expect the other doctors you have lined up to consult with will confirm the ES diagnosis & will be more proactive in offering you help.
Agree! I told him I was reading medical journal articles on vascular Eagles but he said surgery isn’t the answer and it makes people worse and may not help. I do understand that, but from the information I have gathered and read, surgery has helped people and potentially prevented serious and deadly complications. He just doesn’t agree my symptoms are related. But my gut is telling me otherwise but I could have a leak as well. I wanted to talk more to him but I know I can’t have an in depth discussion with him, as I’m sure he’s a busy NR. I know the compression IS causing symptoms. I know the right Dr, will get it.
That’s good you have already sent images to other doctors & have some telehealth appts organised…I know it’s hard when you feel so rough, but at least you have those to aim for, so hang in there. Well done to you for advocating for yourself and for being so proactive