Hi everyone. I have a very complicated medical history, that includes diagnosed rare autoimmune and immune deficiency syndromes. But I have had increasing ear and neurological issues, which although previously attributed to the autoimmune disease and somewhat aiding by corticosteroids, never really fit in the picture entirely. In particular, I have severe tinnitus, pulsatile tinnitus, head pressure, and neck and jaw pain that occur each time we try to take me off steroids. There has long been the discussion of intracanial hypertension, which can occur with steroid withdrawal after long term use, but I have thus far been reluctant to get a lumbar puncture. I also had minor optic disc swelling for a period of time, which furthered that suspicion. In any event, that, plus a whole host of other symptoms caused my neurologist to order at CT Venogram this past week, and the radiologist noted styloidogenic compression of the jugular veins.
I loaded the CTV into the 3d Splicer app, and got the attached image. Can anyone help me understand what the radiologist is seeing?
Thank you, and I look forward to getting to know everyone.
@PebblesAnn if you go into axial view of your original imaging and go to C1 I can help you find the compression. I’ve uploaded my own imaging to help you know what to look for.
I’m rubbish with tech so I’m not able to label your imaging, hopefully @TML can do that for you!
It sounds like you’ve had more than your share of medical issues, and now another rare one! What will you do now, does the doctor who referred you for the CT venogram know about ES, or will you request to be referred to a doctor with experience of Vascular ES? The doctors that we know of who are experienced with VES particularly are Dr Hepworth in CO, Dr Costantino in NY, Dr Nakaji in AZ, so it might mean travelling if you’re able?
Hi @Jules. To be honest, I don’t really know what my next steps are. I am so totally over medical issues and doctor’s visits, that the idea of digging back into yet another rare condition is overwhelming. My neuro doesn’t really know about VES, but based on the radiology report she suggested I speak with a neuroradiologist. That is as far as it has gone for now.
So my main hope is to get some insight from others on whether my images even look like there is enough going on to warrant further exploration or if it is likely just a normal variant that isn’t causing symptoms. The symptoms align so closely with many of mine, so my gut says this is causing problems, but it is sort of crazy to think that with all of my medical history, work ups, etc that this got missed.
@PebblesAnn see attached your annoted imaging. Both your IJVs are compressed between your styloids and C1. Which likely means your vagus nerves are compressed as well. Your left IJV looks dominant based on it being much larger than your right. Styloidectomies would likely help, and potentially C1 shave.
@TML Thank you so much for taking the time to explain this!
One more scan question. On these pictures, it looks like what I think is the right styloid has a “gap” in it. I am not sure if it is just being covered up by something (which doesn’t make a ton of sense for bone) or if maybe the tip as broken off. Any thoughts? I will put a few pics below.
@PebblesAnn - @Isaiah_40_31 is quite good at looking at the 3D images. I think maybe styloid tip snapped OR calcification of the stylohyoid ligament (i.e., styloid → normal ligament → calcification of ligament → normal ligament)?
@PebblesAnn - I replied in our PM but just quickly here - In the top pic your right styloid looks very thick which alone can cause problems. There is also a section of calcified s-h ligament beyond its tip. In the bottom pic, your right styloid appears longer than in the top pic & the section of calcified stylohyoid ligament is also visible below it. i.e. styloid is not broken. It’s not unusual for there to be some s-h ligament calcification that is separate from the elongated styloid.
Looking at your scans- & thanks to @TML for labelling them!- I would say that it’s certainly worth pursuing the vascular ES diagnosis, and seeing one of the doctors I mentioned who specialise in this, if you have the energy! If you could get your neuro to refer you, or your PCP, and get the scans sent there I’m sure you’d be able to get some help
