bruce123 wrote:It seems that nobody doing the angioplasty will accept someone else's imaging. This is normal procedure and make sense. Also, it seems that there is a huge differance in scans depending on who does them.
We considered trying to get scans done but concluded that it is a waste of time. I don't feel I could trust the results of anyone who is not an expert in CCSVI imaging. At this point I'm not even sure if I trust any Doppler ultrasound results to be conclusive. There have been many instances of Doppler showing some stenosis and then the venogram showing many areas where the Doppler missed.
I think improvements to the imaging procedures will be one of the major advancements that will happen over the next couple of years.
I had imaging done at False Creek. They do ultrasound and an MRV. They send your images to Dr. Haacke who provides a pretty comprehensive report about a month later. Here is a sample of one of his reports:
http://www.falsecreekhealthcare.com/sha ... n-2010.pdf
I found it pretty helpful in my case and was glad to have some time to plot my next move. Also I wanted the imaging done by a third party rather than have it done as part of one procedure.
At least Pacific Interventionalists (in California) will accept an MRV done elsewhere and if you don't have one they will require that you have it done there so they can see and consult with you about whether to undergo the venogram and angioplasty.
It seems that Albany will does the venogram and angioplasty as part of the same proceedure. They do not require a MRV in advance.
So I think there is some value in getting at least an MRV done especially if it comes with a Haacke report. While it is trumped by a venogram, it does at least allow you to have a pretty good idea of what would be involved should you elect to have treatment rather than having to make that decision with a catheter stuck in you. The Haacke blood flow analysis will also provide a good benchmark against which to gauge success in any follow up.
But I agree wholeheartedly with you about the worthlessness of most ultrasounds. As far as I'm concerned they have two possible readings - yes and maybe. My ultrasound said my right jugular was open with some flutter and the MRV showed a severe stenosis (likely just below the ultrasound's viewing range).