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Hughes Syndrome APS Forum

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How soon are you notified if there's a problem after ct venography.

Tinythepanda profile image
2 Replies

Hi all.

I've been experiencing neurological symptoms, visual field loss and raised intracranial pressure for several months. During the investigation I was found to have high levels of antiphospholipid antibodies amongst others so was confirmed as having APS. My rheumy was concerned that my neuro was doing little in the way of investigations and treatment and ordered a ctv as he suspects a sinus venous thrombosis or some other type of occlusion.

I had the procedure yesterday with contrast dye and was wondering if you normally wait the usual 2 weeks for results even if there is a problem?Does anybody have any experience of a sinus thrombosis?

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Tinythepanda
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Tinythepanda profile image
Tinythepanda

Thanks for your reply. I'm thinking the symptoms are a combination of aps and intracranial hypertension and of the opinion no news is good news. Once I've got the all clear I can begin treatment for the pressure which I'm hoping will help. Thanks again for your reply.

MaryF profile image
MaryFAdministrator

I am really pleased that you have a rhetumatologist who had investigated this, please do let us know who it is, as the charity is trying to build a database of medical professional who understand Hughes Syndrome/APS. Let us know what they say when you eventually get the results. MaryF x

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