Good afternoon/evening, @Isaiah_40_31 @Bmmac @Jules @TML. So far, no call back from Hepworth. Today I was able to work on uploading my scan to 3D slicer. I can see the mild compression reported on the right but only on the regular CT images. Nothing helpful on 3D. If I did a chin tuck I am sure it would be severe.
@Garden_Smurf can you go to the axial view and go to C1? I have attached my own imaging to know what to look for. I can see what’s going on with your IJVs best with this view. I have also uploaded an axial CT tutorial to the forum just the other day that people find helpful. Axial view imo is best because nothing can hide!
@TML: strangely, what is labeled axial is actually coronal. I had not noticed it until I went to look for the axials. I will try to load my old CT from 2021 which surely had axials.
That’s so odd! It would be great if you can locate the 2021 imaging! I suspect it’ll be very similar anyways!
@Garden_Smurf -
Though I haven’t done this, in the dicom software to make 3D images, there are apparently “tools” that allow you to strip away the cradle holding your head, bone, muscle, etc. to get down to the structures you want to see. I am not techy so am not sure how it works, but hopefully one of our members who’s done it will step in w/ some advice.
It’s easy to see how a chin tuck would affect the compression for sure!
@TML: It looks like the axials are there but not uploading into the 3D slicer. I added the axial here from the DICOM images. I think this shows the cross-section of the styloid (red) and the transverse process of C1 (yellow). Jugular with blue arrow. Of course, this is in the neutral position. I only have symptoms when I sleep or put my chin down or look to the right.
This is perfect @Garden_Smurf , no need for 3D slicer. And you’re correct in what you’ve identified! Red line shows your RIGHT styloid, blue line shows right IJV, and yellow line shows your C1 transverse process. Looks like your right IJV is pretty snug against your transverse process, but that your right styloid isn’t causing the compression there. However, your LEFT styloid (right side of image) seems to be in contact with your left IJV. So that’s something to note. I suspect that when you look to your right, your left styloid may be compressing your left IJV which could be causing the dizziness. The vagus nerve runs between the IJV and transverse process, so if the IJV is compressed likely too is your vagus. Pressure changes on the vagus could cause changes in HR and BP, which could contribute to dizziness. I’m interested to see more of your axial imaging though, to see if the tips of your styloids further down are touching your ICAs and/or ECAs, as both of these could also contribute to dizziness and balance issues. Would you be able to upload some more? My axial CT tutorial I uploaded a few days ago may help you find some more landmarks! Such as the hyoid to see if that’s relevant here.
I don’t think that the tip of the left styloid touches the carotid, @TML. The carotid seems much more medial to that jugular and styloid. Thoughts?
Looks to be solely touching the IJV in that frame. Possible that when you look up and to the left your left styloid hits the ECA which is just a bit above it to the right. Do you ever experience ear fullness or tinnitus in your left ear? What’s the right styloid tip lookin like? Your left styloid must be longer given that we can see it in the frame but not your right styloid anymore?
@TML, I have tinnitus in both ears but I think maybe worse on the right. No ear fullness. It seems my transverse process on the right is just angled more forward toward my jugular compared to the left.
I agree! I think perhaps a c1 shave could benefit you.
@TML @Jules @Isaiah_40_31 @Bmmac @ROkhuysen , I had the dynamic venogram/angiogram and LP today. It was not as bad as I thought it would be. The Fargen team is simply amazing.
He prescribed plavix and recommended right Styloidectomy/C1 shave. If the plavix doesn’t help my symptoms then he will order diamox.
In a nutshell, he identified several issues:
Hi there, Mara !
Glad you got so much work done, and more importantly, a plan!
My findings were very similar to yours - opening pressure 14, intracranial intravenous pressure 24, only small gradients despite severe occlusion of the internal jugular vein, likely because of extensive skull base collateral formation.
The procedure that I had was the styloidectomy /C1 shave - very easy recovery except I had some glue in my hair that dripped down from the dressing - that was very annoying, but pain was minimal.
Hope you feel better soon !
Regina
This was excellent. Was it a long test?
How long do you remain flat?
I was unclear of the C4-C6 connection was? No styloids just C1 shave….
Thanks for sharing 
Well that test certainly cleared things up & answered questions you may have had! I’m glad it was so definitive @Garden_Smurf! I’m also glad Dr. Fargen didn’t think a stent would be helpful. I’ve long held the position that dealing with the cause of the symptoms FIRST is vital because stenting a vein that is being compressed by an external force is basically worthless & sometimes causes worse problems as the external force can actually bend the stent as well & close off the vein completely. So onward you go to make the decision about whom you want to do your styloidectomy/C1 decompression surgery. 
Out of curiosity, how long did it take you to get the appointment w/ Dr. Fargen?
I’m glad that it wasn’t as bad as you thought, and that it showed conclusively the issues!
So have you had a chance to think about what your next steps will be, will you see what Dr Hepworth says? 
I’m glad that you’ve not found the surgery too bad & recovery not too painful
@Jules , the two doctors (Hepworth and Fargen) will discuss the case. I am also seeing Dr. Hui to get his opinion regarding treatment since there are many unknowns. I’m wondering why Plavix would work. Fargen didn’t seem to know. I need to see what others have said about Plavix.
@Bmmac the two tests took maybe 45 minutes form the time he inserted the catheter. I had to lay flat for 2 hours after the procedure but they put me in trendelenburg with my right leg straight since that’s the side they entered from. I think the fentanyl they gave me during the procedure probably helped calm me down. I get very anxious when I’m laying flat. For me, laying flat feels like I’m hanging upside down.
