Cece, Blossom, and Happypoet....
I read everything you write and you always give me hope.
My darling man has gotten worse since his procedure last September. He was treated by one of the best but he hasn't had the proper follow-up care because it isn't available near him. We're in a long-distance relationship so he doesn't always tell me how he's feeling. He finally did this week and I'm very concerned and worried. He had an ultrasound in December and was told that his veins are still open. I don't believe they were correct. I know they didn't know what they were supposed to be looking for, and I know the correct protocol wasn't followed.
It's still encouraging because even without knowing the correct protocol they should have been able to tell if there was a clot or not. From the ultrasound it sounds like he still has two jugulars and no clot. (Whew.) To tell if he still has CCSVI, he would need a CCSVI ultrasound. This would also tell if he has recoiled or restenosed in that way. Also he never had any improvements? Maybe something was missed. Dr. Cumming has been using IVUS lately, it's such a good tool for seeing what exactly is going on in these veins.
I talked him into making an appointment to see his neurologist. She's not completely close-minded to CCSVI but, I don't think she's doing any research. He has an appointment to see her on Monday.
I wouldn't expect much from an appt with a neurologist. But if he is doing worse, MS-wise, the appt is a good idea. Maybe she'll want him on gilenya or tysabri. There are time when the benefits are worth the risks.
With Minneapolis so close, why not get it checked out...but the decision is up to him. He went so far when he went to Albany!