I wanted to share some images from my CT Venogram that Dr. Hepworth had done this week.
I pray this helps anyone going through this.
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How did it go? Your styloids look quite thin, is it more the C1 processes causing compression, or have you got to wait to find out? In the 3rd image it looks like the IJV is very enlarged, is there maybe something constricting it below your collarbone, maybe you have TOS too?
I hope that the travelling went okay, and are you safely home now? 
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The trip was brutal. The CT report says there is zero flow on the left jugular and greater than 66% restriction on the right.
I have been told I also have TOS years ago, but no doctor cares. They just shurg and move on.
I honestly have my doubts that surgery on my left will do much. I have also been told I have nutcracker syndrome and hepworth says I have a spinal cord leak at c6/c7, so not real hopeful.
There is reason for optimism. You have finally found someone who knows what they are doing. Every case on here helps people in the future. You have the great honor (dubious I know) of being one of the worst . There may be someone who tops you. Brian Burkheiser , a singer, said Dr. Osborne indicated his was one of the worst Osborne had seen in a while. It broke him mentally. I think we can all relate to how this syndrome can really break you down.
There is light at the end of the tunnel.
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Yes, I pray that something comes out of my case that can help someone. That is my wish in life is to be restored to a point where I can help others with their struggles.
I have seen the story of Brian, and yes, we have a lot in common. I am just praying that this surgery gives me some relief and that my worst issues aren’t coming from the TOS, CSF leak, or nutcracker syndrome.
Thank you for all of your support… I certainly need it,
Take care,
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@harrisonboy - I’m glad you at least have answers now & a direction to go. It may take two or more surgeries to get you back into better condition, but with each one you’ll hopefully notice further improvement. Dr. Hepworth may be able to refer you to a TOS surgeon as well. His knowledge of experienced specialists is quite extensive.
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I was woken up last night with a severe headache that was like a lightning bolt. I felt and heard something in the back of my head pop and I was near vomiting and the headache was instant and severe.
This is new…
I can barely move.
I’m so sorry that you are feeling so dreadful, try to keep strong for your wife, you’ve got a big step forward with seeing Dr Hepworth, and as @Isaiah_40_31 says, he knows other experts to refer you to. From what other members have said about him it sounds as if he is extremely knowledgeable and wants to explore all vascular conditions, not just ES. The surgery may well not be the answer to all your issues, but it is progress and hopefully with someone like Dr H on your side he will help you forwards to getting the other issues…hugs and prayers 
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Thanks for the prayers.
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Hi from MikiDora. I am new to the forum. Just wanted to share that I too, finally got a good doctor and a correct prognosis. CT scan with contrast confirmed I have Styloid pressing on my right Jugular vein. It is so liberating to finally have a picture and proof of my illness. This journey is a long one with many dead ends. A message to myself and others, improvements will finally come after many years of perusing the symptoms along with a lot of self discovery. Hang in there, it sounds like you have a good doctor. I also feel lucky to have discovered this support group as well. Please keep us updated on your journey.
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Thank you for the support. I am just praying I can withstand this until help arrives.
With ES, Nutcracker, and a spinal CSF leak, I can only take so much.
Praying Hepworth comes through soon.
Bless you
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Hi @MikiDora - Welcome to our forum! I’m sorry to know you also have VES. Have you seen any of the experienced VES doctors on our Doctors List for a consult about it?
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I continue to barely stand up and we were looking at the scans again and it appears that there is no left jugular present, and the right jugular seems to be severed.
How can this be possible and the report show I have flow?
It could be an artefact or something making your right IJV look severed, the CT takes images in slices so isn’t 100% accurate…on the left, where your yellow line is, is that not the IJV? It is normal for people to have a dominant IJV on one side, and a much narrower one on the other. Which isn’t helpful if it’s the dominant side which is compressed! I’m no expert though, so I could be totally wrong about the left IJV…
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You are probably right. It is hard to tell and it makes you wonder how they can see what they need to see?
I guess that is why they are the doctors and I’m not.
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@harrisonboy - I have annotated your left IJV. It’s there as @Jules noted, but it’s very small compared to the right. It also appears to be disconnected at about the level of C1 but I agree w/ her that looking at a CT slice can be confusing because it doesn’t show the complete picture. You do have some flow through both IJVs just very minimally through your left one.
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Thanks for your input.
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Hi can i ask what your symptoms are? Any dizziness. I have constant dizziness not vertigo and now i feel my styloid poking behind my tonsil again. It went away for 6 years and now flared up again. Im worried its vascular.
Hi what is nutcracker?
Severe headaches, both facial and migraines every single day, dizziness, some vertigo, neck and upper shoulder pain, extreme flank pain, blood in my urine, vision issues, light and sound sensitivity, nausea, unstoppable fatigue.
Nutcracker is where the left renal vein is compressed between and superior mesenteric artery. It backs blood up into your spine, and creates other veins, similar to what eagles does.
They also believe I have at least one spinal CSF leak, but not confirmed.
Prayers…
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