Possible VES - questions

Here I summarized the key findings so it is easier to remember and discuss them with your doctors.

1) Clotting/Thrombosis were found in the intersection of right Subclavian vein & right Brachiocephalic Vein, it is also found in left Brachiocephalic Vein and Superior Vena Cava. Potential etiology for IIH
2) Your C1 was found to have rotated to the right (offset to the right laterally) - potentially causing your pain behind the left ear and below the skull.
3) calcification/sclerosis of the arytenoid cartilage of unknown significance - Potential etiology for swallowing issues although clotting in Superior Vena Cava can also cause swallowing issues.
4) Partial empty Sella - a marker for IIH

A repeat CTV or MRV should show whether the clotting still exists or has dissolved since it was found in a 5 year old CTV ( 2018) though I suspect it does still exist to some degree and could be why you have high pressure readings and IIH symptoms.


Dear @NRuflove I am not able to read through all the most recent posts in detail but have jut skim read them… (I hope to be able to catch up more soon) …I just wondered if you had an appointment with Mr.Toma? …I have just been referred to him for possible bolt testing for investigation of poss IIHWOP.

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Hi @LivvySheep

Mr Hughes at CCL did refer me to Mr Toma, however, instead, I decided to see Mr Laurence Watkins at Queens Square.


Would a C1 shave not provide relief here … not sure on anatomy regarding vertical spacing between TP of left C1 and the base bone of the skull…
The left TP looks larger than right (?). Also hard to tell, but possible (?) the depth of the base bone of skull is longer on left as well.

Good question. I really do not know whether that is a feasible option here. Perhaps, Doctor Axon can make that call.


Was thinking it could help, but may be difficult to get them to do it … So hoping you find relief @NRuflove.


@Leah Sadly, it was Mr Axon that told me it was my left C1 TP but said it was pefectly normal for it to be protruding the way it is. The pain caused around my C1 is severe and stops me for being to lie down to sleep as well as many more symptoms. However, he was much more interested in my pulsatile tinnitus, which, in the overall scheme of things, doesn’t bother me.

I have a similar situation and have been able to manage it a little bit. So the things that have helped me are a lidocaine patch that I wear at night… Gabapentin, (I can only tolerate two 300 mg a day but it is very helpful for the nerve issues). Of course ibuprofen to reduce inflammation. Occasionally a round of steroids to knock back the inflammation . And ice.

Can you tell if the pain is nerve related? And what happens when you try to lay back? Can you lie flat on your back and if so, can you turn your head to the right and relieve some symptoms. If you can, lie flat for five minutes of every hour to open up the IJVs (a hint I found from Caring Medical that is working for me).

I’m doing this on the fly, without the time (now) to go back and look at all of your data above. But if the compression is on your left, when you turn your head to the right, you should be moving the Styloid from C1.

If you can lay flat, that’s certainly easy to try and see if it relieves some of the pressure in your head.

I have said for years that I feel like I have a fork in my neck right there. Perhaps as a group, we can come up with some ways to help and get you the treatment that you so desperately need. I will look again at your images and see if anything jumps out at me besides the obvious that others have already stated.

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Hi @Leah

I’ve been told that I don’t have any significant compression and discharged from the care of the ENT consultant. My C1 issue is something I will need to do battle with at a later time as my MRI threw up other issues! It never rains but it pours :joy:


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That’s rough, hope you get the new issues sorted :pray: :hugs:

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I’m really sorry to know there are “bigger fish to fry” for you at the moment, @NRuflove. I also hope you’re able to get the help you need to resolve those ASAP!

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