Finally Pulsatile Tinnitus Diagnosed: Internal Jugular Vein Stenosis

Updates on this?

Yeah gave an update on the last page. Had surgery to remove part of the lateral tubercle of my c1 and some calcified ligament/muscle in my neck that was massively compressing my IJV. they only did one side for now, I have follow up in a few weeks to see if the vessel has been cleared and responds to the new space created. If this doesn't help my symptoms they'll go ahead and do the second side.

Have a monster of a scar on my neck now. It sucks for like a day and a half a ton of symptoms I've had for over a decade had massively disappeared- ringing in the ears, dizziness, wooshing in the ears, poor color vision/contrast, but it's back with a vengeance. I'm hoping it's the amount of swelling in there.

They requested my consent to punish a study as they'd never seen collateral circulation like mine. This could be a big development for the visual snow/tinnitus community so this next year will be interesting
 
Figured I'd update this. Just had surgery about a week ago to remove the compression on my internal jugular vein. It's bilateral but they insisted on only doing one side at a time. So far the wooshing is still there, but they said that's to be expected for a few reasons- 1. Tons of swelling, and 2. The vein had been compressed for so long it's pretty damaged/fibrosed. The good news is it should continue to improve and if they did make enough room a balloon dilation could be the next step. I swear some of my strange neurological symptoms have already drastically improved, I'm hoping I can make something resembling a full recovery.
 
I just joined the forum. I too have PT 24/7, throbbing, off and on migraines, vertigo/dizziness, and unable to perform some outdoor activities. I spent the last several years seeing ~15 to 20 drs and MRI, MRA, CT's with no luck. Finally found a neurologist that sent me to a interventional radiologist. The radiologist found high intercranial pressure caused by bilateral jugular compression (SJVCS), the jugular being compressed between the the styloid process and C1 tubercle. I also had surgery where the R side styloid process was removed and C1 tubercle was shaved. They choose the R side first since it appeared to be the dominant side, the PT and throbbing is still intense, but vertigo/dizziness seems to have subsided, and I have resumed outdoor activities. I was so expecting to wake up from surgery without PT, but they said post surgery swelling would take time to resolve. After 4 mos I had a follow-up CT and the R side jugular has gone from essentially 0 to 50% open. They are recommending stenting to open the R side fully.

I am curious how your recovery is going? and what your next steps are likely to be?
 
Cerebral Venous Stenting for Pulsatile Tinnitus After Unsuccessful Jugular Ligation: Case Report and Literature Review

Pulsatile tinnitus constitutes up to 10% of all tinnitus cases. Cerebral venous stenosis is a known etiology of pulsatile tinnitus. Treatment of pulsatile tinnitus secondary to venous stenosis with venous stenting has been reported in the literature but is not performed routinely. We would like to report a case of chronic pulsatile tinnitus treated with venous stent in a patient who previously underwent jugular vein ligation.

Full article: https://journals.sagepub.com/doi/full/10.1177/0145561320946155
 
Dural Arteriovenous Fistula Formation as Eagle Jugular Syndrome: A Case Report and Literature Review

Background
An elongated styloid process can less frequently lead to symptomatic compression of the internal jugular vein (IJV). We present the first case of dural arteriovenous fistula (DAVF) in association with compressed IJV by an elongated styloid process.

Case Description
A 77-year-old woman presented with pulsating tinnitus. DAVF at the right hypoglossal canal was diagnosed, and she underwent transvenous embolization. The shunt flow was reduced, and the symptom disappeared after transvenous embolization. However, 2 years and 8 months later, retrograde sinus drainage from the residual shunt was asymptomatically found on magnetic resonance imaging, and angiography revealed progression of IJV stenosis caused by an elongated styloid process. Subsequently, she underwent a second transvenous embolization, and the arteriovenous shunt was almost completely obliterated.

Conclusions
The present case suggests that venous hypertension by compressed IJV can induce the development of DAVF. It is helpful for the diagnosis and treatment of DAVF to keep in mind the possibility of IJV stenosis owing to an elongated styloid process.

Source: https://www.sciencedirect.com/science/article/abs/pii/S1878875020319938
 
@Stillsearching, I have a similar issue but not yet diagnosed. Neck ultrasound has shown bilateral internal jugular vein stenosis at J3 area.

I have been suffering from tinnitus, insomnia, neck pain, vision problems, hearing loss and memory decline for the past 5 years. I also went through imaging tests MRI, MRA and they all came back negative. I am scheduled for CTV of the head on August 24 and hoping that will confirm the diagnosis of bilateral IJV stenosis at the C1 vertebrae and styloid process.

Wondering how you are doing after surgery? I know you have not been here since last year. I also wanted to know if there were any complications regarding the surgery?
 
@MikeG, how is your recovery going? Has a stent been put into the Jugular Vein to open it all? Overall, how was your surgery experience?

I am thinking about getting the same surgery if diagnosed so I would like to gather more information about it.
 

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