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I am having a CT venogram of the head and neck veins later this month. This is partly because I am considering craniocervical fusion for cranial settling (a form of craniocervical instability) which tends to occur in EDS in the absence of trauma and has been associated with dysautonomia (and some lucky people but by no means all, improved or cured with this surgery), and the venogram is a prerequisite for surgery, which I am as yet undecided on. 

The other reason (and the one I am most excited about as it may avoid surgery if it turns anything up) is because venous outflow obstruction from the brain has been shown to cause raised intracranial pressure, CSF flow abnormalities, reduced cerebral perfusion, headaches, cognitive impairment and sympathetic hyperactivity. Sound familiar anyone? This is non invasive but can lead to further testing and treatment if positive, with stenting of occluded vessels (or anticoagulation if there is a thrombosis). This has resulted in relief for many people, and there is a good youtube talk by Dr Kenneth Liu on the subject.

My illness was triggered by a forceful valsalva, and I have from the beginning expressed concern about my intracranial pressure - is it high, is it low, sure doesn't feel normal, & the initial insult would have caused massive back pressure at the time. 

So I was wondering has anybody else on here had a CT or MRI venogram of the head and neck veins? Did it show anything or lead to any treatment? If anyone has had this, please share!

B xxx

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