My goodness North, I am so sorry you have had such a medical history.
But forgive my intense interest and curiosity because I have speculated that there had to be post surgical persons who developed MS if CCSVI is the cause of MS.
The reason is that it is not uncommon if a person has cancer in the neck or throat to have the jugulars removed as part of radical neck dissection, this is done only in severe malignancies so such persons frequently do not live long.
Length of life post surgery matters because our best estimate of how long this pathology would take to allow lesions to develop is some years, as it does in venous insufficiency of the legs. Therefore the fact that jugulars are removved in such persons and they are not diagnosed with MS in a year is not unexpected.
But I have assumed that there had to be people out there with other kinds of neck issues or people who defied the odds and lived many years after such a surgery that later developed MS. I assumed that since it takes so long even if it was happening people would not make the association. I wonder if you are that person? I can't help but be very intrigued....
Even if you do not like the idea of getting treatment, I would encourage you to consider seeing/contacting Dr Dake or Dr Haacke and really explaining your medical history, I would suspect one of them would be keenly interested in imaging your neck carefully because of the implications.
If it can be shown that persons who had no "genetic" reason to have MS but who had damage to the neck veins then developed MS, this is very weighty evidence that the cause of MS is the stenosis or occluded venous drainage, not the other way around.
Is it possible you had an MRI of your brain pre surgery and can show that you were MS lesion free pre surgery? There may be such an old MRI record.
Welcome and I will be interested in what your workup shows. Thank you so much for sharing your story. Wow...........
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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