I have severe bilateral jugular vein compression and will likely have to be decompressed on both sides. I am getting surgery no matter what, but I’m just curious if there’s any information or research out there about the long-term outcomes, effects, or issues that may arise later in life after having this done? I am only 26, so I (hopefully) have a long life ahead of me, and I’m just wondering if this is going to affect me 50 years from now. I’m interested in information about one or both sides. I know that this is a newly-recognized condition, and that decompressions have only widely been done for the last 15 years or so, but I was just curious about whether there are any earlier cases with followups that anyone has heard/read about. Thanks in advance!
You’ve asked a tough question, @carina, but I applaud you for thinking ahead about the possible long-term consequences of the surgery you’re considering. I’m afraid I don’t have an answer as to whether earlier decompression outcomes have been documented. We’ve got members, including @Jules, who had IJV decompression 10+ years ago, & as far as we know, their outcomes have continued to be good i.e. w/o later complications.
I think part of the answer to your question is whether or not there are other health factors at play such as Ehlers Danlos or other syndromes affecting the ligaments &/or bones. People who have ligament compromise tend to have more problems with vascular & other types of compressions in their bodies. These can show up at any time but seem to reveal themselves bit by bit as we age. vES is simply at the “top” of the list as the others are progressively lower down in the body.
Thanks for taking the time to respond! I’ll be more than happy if surgery gives me 10+ good years, and looking into other compressions is definitely part of my plan for after I get my IJVs decompressed. I saw a good resource regarding all types of vascular compressions in the research section of this forum, so thank you for that! I looked at some of my other imaging from the last year, and I do think I have MALS also based on my imaging and symptoms, so I’ll probably be tackling that next (unless surgery doesn’t resolve my right shoulder pain, then I’ll be looking into TOS - but I don’t see any signs of aTOS or vTOS on my imaging, however I haven’t had any imaging of my shoulders that hasn’t been in a neutral position). This site is such a helpful and informative resource. I can’t thank you and Jules and everyone else enough for keeping it going!
I’m pretty sure that it’s been mentioned that there can be long term neurological effects of IJV compression, and possibly being linked to dementia, but I can’t find any actual research papers to confirm it, if you Google this question the answer is
’ Intracranial hypertension can contribute to cognitive decline and dementia, primarily through its association with vascular damage and neuroinflammation.
Understanding Intracranial Hypertension
Intracranial hypertension refers to increased pressure within the skull, which can result from various conditions, including head injury, tumors, or idiopathic intracranial hypertension. This elevated pressure can lead to damage to brain structures and affect cognitive function.’
But the links to explanations for this all then talk about increased blood pressure rather than intracranial hypertension. But I think it stands to reason that this increased pressure can lead to inflammation, can inhibit waste removal (which the CSF does) so could build toxins up, and perhaps damages blood vessels long term. There are a couple of research papers which you might be interested in:
Cerebral Venous-Associated Brain Damage May Lead to Anxiety and Depression - General / Research Papers - Living with Eagle
This article by Kjetil Larsen mentions effects of intracranial hypertension:
View of Does thoracic outlet syndrome cause cerebrovascular hyperperfusion? Diagnostic markers for occult craniovascular congestion | Anaesthesia, Pain & Intensive Care
FARGEN; HUI et al. (2025) - Cerebral venous outflow revisited: Contemporary insights to simplify a complex disease - General / Research Papers - Living with Eagle
This makes sense, yet another reason why surgery is a necessary intervention and the medical community needs to be more aware of the condition. I know that cerebral venous outflow disorders can cause white matter hyperintensities on MRI which are indicative of brain damage, but they can be reversed in some cases. I have a few WMHs, and I’m curious to see if they will shrink or go away after I’m decompressed. I’ll check out those papers, thank you!