Well I have a somewhat long but very interesting story related to IIH. I have gotten my MRI, MRA, MRV. The MRV showed that my right internal jugular vein ends ubruptly at my skull base, but no venous sinous thrombosis. The interesting part is that I am a registered vascular technologist and I know that this is has not been the case since I have scanned my neck many times. So after the MRV results I looked at the vein and it is in fact occluded! Now it gets even better that I was sent to Buffalo for a week to learn about venous drainage from the brain and collateralization as this is thought to be possibly be related to Multiple Sclerosis. The theroy of impared venous drainage in MS patients has yet to be proven but I found it very possible. It has been termed CCSVI and the treatment is called the "Liberations treatement". No these are conterversial topics and I don't totally agree with either party of thinking because the venous drainage system is complex to evaluate. I just feel that we don't fully understand the brain/neck drainage. The problem is that drainage follows different pathways while lying and sitting/standing so this is information that can't be obtained by CT, MR or Angio. You must evaluate the patient in both positions. There can be flaps, valvue issues and reflux. It can be done but only with technologists after they have specific, intense training.

So coming back to myself, my neurologist said "there are no abnormalities on your imaging studies to suggest a casue for IIH". So I wonder, wouldn't the neck venous drainage problem be enough to cause my symptoms?

Now what am I to do with this information for other patients with IIH? Has ayone heard about this type of cause and treatment options? I think I can develop a ultrasound test to help maybe at least a small percentage of patients if the extracranial venous drainage is the problem. Thoughts?

Sorry this is so lengthy.[You must be registered and logged in to see this image.]

hi Dexter's mom. there is a newly described entity that your neuro has probably not heard of, called styloidogenic jugular venous compression syndrome. it is caused by an elongated and posteriorly located styloid process, and associated with Eagle syndrome. the study author recommends an MRV of the neck to completely assess this.
Deb

I found your post extremely interesting, and after much consideration, I think it's something that you might want to discuss with the I H Research Foundation. You can contact them via their website.