I have been having pulsatile tinnitus for 9 months with no resolution from neurootologist. One thing he did note was he believed from MRV testing that the IJV was very small. He said it was “almost down to nothing” and that was pushing high pressure to my left side like a kinked hose. I also have left sided sensorineural hearing loss. I have some facial pain and am having a feeling of pulsing in the back of my throat on the left side, along with some throat spams and tongue tremors that will come and go. Doctors are regularly mentioning anxiety to me at this point. Which is valid! I wish to upload some photos i don’t think my styloids are very long but they look angled to me. Any advice or suggestions? I was looking to book an initial consult with Osborne Head and Neck.
@leaha I am so sorry you have been dismissed — unfortunately, that is something many of us here are very familiar with.
The fact that your neurotologist noted that one IJV was “almost down to nothing” and compared the pressure effect to a kinked hose would definitely make me want that investigated further, especially with pulsatile tinnitus and the other one-sided symptoms you’re describing.
With vascular Eagle syndrome, styloid length is only part of the picture. Angle, thickness, relationship to C1, and the amount of space available for the internal jugular vein can matter just as much. A styloid does not necessarily have to look dramatically long to contribute to compression. Once the moderators enable uploads, you should be able to post some images.
It is my understanding that most, if not all, surgeons who evaluate vascular Eagle syndrome want CTA imaging from the head through the neck.
Do you have someone who could order a CTA/CTV head and neck for you? CPT code 70471.
They would need to specifically request the CTV/delayed venous phase protocol so the internal jugular veins and venous outflow are adequately evaluated. Thin slices and 3D reconstruction can also be very helpful, especially for looking at the relationship between the styloids, C1, and the jugular veins.
Dr. Osborne is a reasonable place to start for a consult. His wait times are often fairly short, and in many cases removing the styloid high enough can relieve the vascular compression, although that is not always sufficient, as was the case for me. I would also consider consulting one of the surgeons listed on the forum who specifically addresses vascular Eagle syndrome. @Isaiah_40_31 or @Jules have those details.
I am glad you found the forum 
@leaha - I had hearing loss as the result of IJV compression. Unfortunately my IJV compression wasn’t diagnosed until 7 years after the hearing loss started & in the meantime, I had a surgery to try to slow/stop the hearing loss which didn’t work & didn’t stop it. Once I had my IJV decompressed, the progression of my hearing loss stopped. Since your neurotologist noted you have IJV compression on at least one side, I think it would be good for you to get a couple of opinions from knowledgeable doctors. Dr. Osborne is a good place to start as @MGORNEAU said & one of these other doctors would be your best bet for an opinion regarding specific IJV decompression surgery:
•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ Does telehealth initial consults
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, NY, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS Does telehealth initial consults
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia, PA 215- 955- 6760
David M Cognetti MD | Jefferson Health Does do online or phone consults.
•Dr. Peter Nakaji, Scotssdale, AZ, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772 - Only does in-person initial consults
You should be able to upload images now that you’ve made a post on the forum. 