Diagnosis’s with right jugular vein compression by C1 by dr Patsilades. He scheduled surgery next day but then the angiogram didn’t confirm the pressure gradients as being issues. At a loss if I should still explore this.
My issuers certainly feel vascular. I’m unable to lan flat, trouble bending head down or side to side. Makes exercise intolerance. Get second opinion or let it go since angiogram was normal. Thank you
Your symptoms are definitely ones we see w/ vascular ES. Compression of the jugular isn’t normally “full time” but occurs when your head is in particular positions as you noted. A second opinion would be a good idea.
Have you had a CT scan to confirm that your styloids are elongated? If not, that would be a good next step with a follow-up appt w/ a doctor who is familiar w/ ES. Someone from our Doctors List would be a good place to start.
Try sleeping w/ your head elevated (though it sounds like you are) to help w/ symptoms at night. Some of our members have found taking a blood thinner has helped reduce their vascular symptoms. You would need to see your PCP to get an Rx for that, of course.
I would get a 2nd opinion. They did an Upper Extremity Arterial & Venous Thoracic Outlet Syndrome Ultrasound on me & it came back normal. But then they did a 3D CT scan of my head & neck & it clearly showed jugular vein compression on both sides from my styloids. I agree with Isaiah, it depends on position of your head & neck. That is one of the reasons it takes so long to diagnose this. The symptoms go away if you aren’t in the right position.
I would definitely get a second opinion, here’s a link to the doctors list if you’ve not already seen it:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
I had bilateral jugular compression, & had both styloids removed in 2 surgeries; I feel so much better!
I’ve had multiple CT scans. He did not say specifically if my styloids were elongated. Just that I had severe jugular compression.
I’ve been sleeping with bed raised 6-12 inches for past 2 years. When I got covid, all of my neck issues got worse to pt it was difficult to turn my neck left and right. I can’t even sit back slightly in a couch.
It feels like I have vascular dementia right now. There could be multiple things as cause of my symptom and covid is the ultimate wildcard since who knows what it’s doing to blood vessels. Probably made pre existing condition worse.
Thanks, making appt with Dr Hui at Hopkins on Tuesday. Glad you are doing better. May I ask how bad things were prior to surgery?
The recommendation for head elevation after ES surgery is 30º of elevation to help reduce inflammation. Is 6-12 inches of head elevation helping reduce your symptoms?
Dr. Hui is likely to suggest stenting your jugular veins. I feel it’s important for you to know whether or not you have ES, & if so, what role the styloids may be playing in your jugular compression. If having them removed could improve your situation without having stents placed, that would be the best course to pursue as stenting comes with its own set of problems. Getting a CT scan w/ contrast, with your head in the position that causes your symptoms to be worse, will help to answer the styloid question. Having your head in a neutral position during the scan often doesn’t show if the styloids are compressing anything.
Johns Hopkins doctors don’t seem to know much about ES so it’s not a good place to go for that. You should see one of the doctors on our list who is more local to you when seeking to find out if you have ES or not.
I felt like I was drunk alot of the time- off balance, would have trouble concentrating etc. I had real room spinning dizzy spells, feelings of falling even if I was sitting down, & other weird feelings, like a sort of sucking/ brain being rolled up feeling- that was horrible! I had painful head & ear pressure too, & pulsatile tinnitus. I’d sleep in a recliner chair most of the time. They were Intracranial Hypertension symptoms. I had a CT with contrast which showed the compression, but never had vascular or Intracranial pressure measured.
That said, your symptoms sound worse, I hope that you can get some treatment. There are quite a few research papers in that section which discuss jugular compression, if you’re having trouble being referred for surgery it might be an idea to have a look at those & take them with you? My styloids were compressing the jugular veins the length of the styloid, so right from near the skull base, so were taken right back. Some members have needed the C1 process shaved too; another thing for you to consider alongside the styloids.
That was the plan was to shave the C1. Now with normal angiogram, the doctor said the surgery would be pointless. I will see if Dr Hui has another opinion.
It honestly doesn’t do much, but being all the way flat is definitely worse.
I feel like the lumbar puncture complicated everything as I got a CSF leak from that. Before that, I was waking up at 5am with feeling like my neck was on fire.
I’ve had so many ct scans that I’m not sure if I can do any more. As far as positons, even at rest, my head feels like vice is on my head. It’s just I can’t even turn my head left or right now and can’t bend down without crazy symptoms.
You may be in the same situation as Jules was w/ the styloid compressing the jugular down the full length of the styloid so compression occurs in every position. I’m really sorry for your terrible symptoms & for the bad after effects of the lumbar puncture.
Have any of your CT scans been of your head/neck area (specifically the area between your skull base & hyoid bone)? If so, & the angle is right, your styloids should be visible. They can also be seen on a panoramic dental x-ray if they’re elongated.
A fiery neck can absolutely indicate ES as elongated styloids can irritate the nerves to the neck muscles (accessory nerve specifically). You could get yourself a wedge pillow (Costco has a really nice memory foam one in stock right now for $40 or Bed Bath & Beyond has a regular foam one for $25) to increase your head elevation w/o having to change your bed further. Amazon also has a selection. Sleeping more upright might really help. I also suggested talking to your PCP about starting on a blood thinner. That been useful for knocking down vascular symptoms for some of our members. I know I mentioned this before.
Really carefully consider the options you’re offered as far as shaving down C1 or stenting. I think I mentioned that many doctors have stopped shaving C1, especially if the problem is unilateral, as that can cause neck instability. I would suspect there’s even more chance of neck instability if both sides are done. You’ll have to decide which procedures you feel are worth the risk so you can start living a more normal life, & that is a tough decision. Dr. Hui is a good & compassionate surgeon from what I understand. I hope he can give you some great guidance.
I will be praying for you to have wisdom to know which direction is best to go.
Thank you my friend, to complicate matters, I’ve being evaluated for CCI(cervical instability) by Dr Patel in South Carolina. His office just got back to me on Friday and said he wants me to come into office to discuss treatment plan.
I said I’m in too bad shape to travel, so they will be doing tele visits next week to discuss. That likely means I have some CCI. Usually Patel does physical therapy, but fusion may be an option if it’s severe.
I have a huge wedge pillow, and even laying on that causes major problems. I can’t get comfortable in any position.
When I was in hospital for covid, they gave me plavix and that seemed to help my symptoms a decent bit. I was very surprised I remember.
Yes, I’ve had CT scans of head and neck, my brain fog is so bad at the moment it is next to impossible to figure out how to post images or view them myself to see if they are an issue
Hi Frankdux,
Posting images on here is as easy as dragging & dropping them into the text box where you write your post. If you want to do it the more “official” way, you can click on the underlined up arrow in the little menu at the top of the text box. That takes you to a link where you can upload the image from your computer to your forum post. Currently, using the up arrow method isn’t working for me so I drag & drop my pics at this point.
I’m so sorry for the severity of your situation & for all you’ve been through with COVID, the CSF leak, jugular compression, CCI, etc. With that mix, your biggest challenge will be where to start i.e. which thing do you work on first? That is a good question to ask Dr. Hui.
I think Jules might have mentioned Dr. Hepworth in Denver to you. He is very experienced w/ vascular ES & is a meticulous surgeon. He does work together w/ a vascular surgeon &/or neurologist depending on the situation. I know you said you’re too sick to travel, but if your symptoms stabilize some, perhaps seeing him would be an option. It’s tough for you that sleeping comfortably is so hard. Not being able to sleep well also adds to the symptoms, brain fog & stress.
I’m glad you were able to remember that Plavix helped you when you were in the hospital. Just being able to clear away some of the mental fog would help you feel more on top of all this. I hope your able to get an Rx & try again w/ the blood thinner.
Sending you a gentle hug & lots of hope for making some solid progress toward recovery in the coming weeks. 
Frank,
You may want to google POTS and COVID. They is alot of new evidence coming to light about long-haul covid and POTS/Dysautonomia. They are seeing a big increase in patients (post-covid) at Dysautonomia centers. There have been looking at POTS as being an auto-immune condition triggered by a virus.
My daughter has has POTS symptoms since age 7 and disabled from it since age 13 so I have been watching this one pretty closely.
It sounds really grim, I hope that you can get some answers from Dr Patel…it’s so hard when you have several conditions going on. Thinking of you…
