Hey everyone. I posted a while back with my scans and symptoms it very much looked like I had Eagles. I have recently seen a specialist in London who has confirmed I have JVC but isn’t convinced I have Eagles. My Styloids were around the 3cm mark and he deemed that as within the normal range. They also think I may have a Spinal leak so the next step is a scan next week to look for the leak. They obviously are going to look into what is compressing my jugular but the question I have is, can you have symptoms and compression from just calcificaton itself and not necessarily elongation? I definitely have some cranial nerve compression bcos of the pain and symptoms I have. Any help would be appreciated
You can have IJV compression if the styloids are quite thick or angled- the IJVs come out of the the brain through a small hole in the base of the skull called the jugular foramen each side, and the styloids are right next to this, so can easily squash the veins at that point, meaning the styloids don’t have to be at all elongated to cause issues. Sometimes the IJVs can be compressed further down at the level of the C1 processes, between the styloid and the C1 process. There are a couple of other reasons the IJVs can be compressed though, the SCM muscle sometimes causes compression, and occasionally other blood vessels or even nerves can too. But if you feel you’re getting nerve pain too from the styloids, then it could be the styloids are thick or angled and are pressing on nerves as well…
We’ve had quite a few members who have had IJV compression which has caused high intra-cranial pressure, and this has then caused a CSF leak, which then causes symptoms of low intra-cranial pressure, the leak sometimes heals itself so pressure builds again and they cycle constantly between high & low pressure! @jimjammer123 has had this if I remember right…
Hopefully if you have more testing done it’ll show what’s going on!
Thank you Jules that’s very helpful. I did get diagnosed last year with IIH but I am pretty sure it is the JVC that is causing this and like you said, in turn, causing a leak. Luckily I am a private patient so I have some good doctors who are seeing this through for me. They have said they will remove the Styloids If it turns out to be those that are causing the problem but they are doing further testing to make sure so that I don’t go through surgery and then it doesn’t relieve anything.
That’s good, I’m glad that you have helpful doctors!