Sorry, Joan. I have not received a diagnosis yet. Every Dr. I see says something different. I just want these symptoms gone!!!
I hope my condition can shed some light on this problem. Some Dr's say there is nothing they can do about the pinched jugular, and others say if I were in a college town, someone would publish a paper on me.
I am going to accept Dr. Haacke's invitation for imaging. At this point, I have nothing to lose.
No apologies needed, Joel
I'm sorry for you....I'm sure this has been a stressful time not knowing what's going on. Dr. Haacke invented a bunch of MRI techology, he's a really brilliant and caring doctor. He'll probably be able to recommend some folks to help you out, and will most likely publish a paper on you, as well.
The test will involve some MRIs (magnetic resonance imagery)- to view your brain, and MRVs (magnetic resonance venography)- an MRI with a bit of contrast dye added to your veins, to see what's going on with blood flow to your brain.
There have been a couple of folks like you who presented first with blocked jugulars without a prior MS diagnosis....one at SUNY Buffalo and one at Stanford, so you are not alone.
Keep us posted as to your visit to Dr. Haacke, and hang in there. In the meantime, I might suggest sleeping with some books or a board under the head of your bed, to raise just the head of the bed a few inches. Don't do it with pillows, you'll just crimp your neck...use something under the bed itself. The docs at Stanford recommended this to my husband before he was treated. This allows the other veins to help out your jugulars....when we lie down flat, the jugs are responsible for all the blood flow back to the heart. Yours need some help.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS