what steps can he do to maybe make it easier for my IR to see stenosis? or easier for say like dr.d to see it. i mean is it like, I have my IR do the MRV just to pretty much send it to another dr. who knows what to look for?
i was reading dr. sclafani post with him saying a MRV is pretty much useless, so should i not even have a MRV done?
Do you have insurance that will be covering your MRV?
If your IR sees stenosis on it, will he be willing to treat? If it's a matter that you need some imaging to support that you have CCSVI or you won't be treated, then yes an MRV or a doppler ultrasound or both would be the options to pursue.
I think Dr. Sclafani's post was that some things are more useless than other things (!) which was a way of ranking the MRV lower than the doppler ultrasound. I think what's happening is that the docs are going in the veins and sometimes what they find is really there is nothing like what it looked like on the imaging. But you're in a different situation if you need some imaging that shows CCSVI or you won't be treated? That is my interpretation of this. Then, yes, it's needed, even though it wouldn't be if you went to an experienced CCSVI doc, of which there are still very few.
Best of wishes with all of it and did I read right that you are in Hawaii? We've had Hawaiians here before with no options on the islands, so if this works out for you, it will help others too.
maybe the links to the protocols are in the research sticky?
For me the deciding factor with the MRV would be if insurance covered it. Except in situations where the doppler did not show anything and the doc did not want to treat without an MRV. But in that situation the doc would likely be an inexperienced one, which I am cautious about too. Sometimes I wish I weren't so cautious, it seems like everyone else has been treated already!
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Exactly, and yet another reason to not throw the baby out with the bathwater. When I see people on the facebook page telling other people to "just skip the MRV/Doppler and go straight to the venogram", I cringe.newveins wrote:worth being the operative word here for me. Very useful as without the MRV my insurance would not have paid for the procedure, but from a diagnostic point of view not that useful according to my doctor.
The majority of people who must get insurance to pay for this, and don't have such financial luxuries, cannot just "go straight to venogram" without some underlying reason. I have to believe that is one of the most ridiculous pieces of advice I've seen yet. While on it's face it *appears* reasonable, where the majority of people live is not with some appetizer platter of diagnostic choices, and oh which one do I want first, the MRV, the Venogram, the Doppler, so difficult to choose.
The reality is, very few insurance companies are going to just wheel you into the op room for an invasive diagnostic procedure based on curiousity and nothing else, they aint called screening tools for nothing.
So if MRV is the way you have to go, fine. Doppler, okay fine do it. If that's what it takes to get the insurance company paying the bill, so be it.
If one is traveling to a foreign country and paying cash, whole nother ball game.
Somehow, someway, the MRV on a lowly 1.5T machine without any bells and whistles was enough to get the vast majority of us Stanforders through the process and for insurance to pay for it, so I do take exception when I hear such statements as "practically worthless" as it pertains to MRV. Maybe from a strictly scientific POV, but my body's not a science project either. I'm trying to get treated, and if I really want that, I'll sit in whatever tube they want me to, small price to pay.
I'm just curious what options people have when it comes to getting insurance to pay for venograms without any pre-screening tools.
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Based on my history, symptoms and research, I'm 95% certain that I have vascular issues that may respond favorably to angioplasty by an experienced, knowledgeable CCSVI treatment provider. I have nowhere nearby (that I've been able to locate) to get a Doppler ultrasound a la Zamboni, or an MRV a la Haacke. I have limited funds, and a catastrophic health insurance policy with a $10,000 per person, per illness deductible. So, effectively, I'm paying out of pocket any expenses up to $10,000.
The real clincher is that, if I had a negative Doppler and MRV, I still wouldn't believe the results, and would go for the catheter venogram/plasty anyway. (The number of false negatives has not been insubstantial, from what I gather.) To me, that's the classic situation that some doctors refer to when prescribing tests: if the results aren't going to change the plans or treatment going forward, then is the test really necessary? My conclusion, for myself, is that I can forgo those tests.
Perhaps naively, I'm hoping to keep my expenses below $10K. I believe, in a best case scenario, if I go with Dr. Siskin's treatment plan (clinic, not hospital), I can do that. Not so with Dr. Haskal, and I doubt it but don't know about Dr. Sclafani. I'm on all three waiting lists.
If anyone has some insights that might change my way of thinking, I'm all ears.
I'm very aware that my reasoning is simply not applicable to many others, who need to base their decision on their particulars.
BTW, Mark, I appreciate all the helpful and informative posts you make on this forum. Just happen to disagree a bit with this one.
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As I said - no hard and fast rules.