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The doctors were very insistent that they were treating MS, not CCSVI--I wonder why.

Perhaps because they wanted to get paid, and certain cretins have been going around warning people if they travel too far they're in danger of falling off.

Chronic cerebro-spinal venous insufficiency is a good description of what is being treated. These veins are becoming not enough to keep the person healthy. The condition gets worse over a period of years. Maybe, like ears, they should keep growing throughout life. Maybe if they stop growing, and adapting to physical changes, they become insufficient. Or the valves get stuck. Seems the patients do get better though.

The problem is really with the single-minded focus on the acceptance of the description by neurologists (and others, like Society executives), who have a lot invested in an insufficient understanding of the disease, not the name. If it works, who cares what you call it, who has raised money for it in the past, or what has been written in research papers? Aren't the patients more important? ...OK, where are those tranquillizers??

dania wrote:I asked him that. His insurance paid for it. I plan to call the clinic tomorrow and find out.

You are on this already! How nerve-wracking. I hope this could be the solution. I agree with CD about this being major surgery.

I find it puzzling that such an invasive medical procedure that mirrors CCSVI ,
could get approved by health insurance ...... with what appears as ... ease.

And yet getting CCSVI treatment and the cost paid for ...... get's resistance.

Are there any published reports of this procedure ?

It's good news alright ..... better when there is documentation to examine.


Mr.Success

Well, it is in response to treatment failure, which must be a heavy blow, and quite disabling.

MrSuccess wrote:I find it puzzling that such an invasive medical procedure that mirrors CCSVI ,
could get approved by health insurance ...... with what appears as ... ease.

And yet getting CCSVI treatment and the cost paid for ...... get's resistance.

Are there any published reports of this procedure ?

It's good news alright ..... better when there is documentation to examine.


Mr.Success

This is what he told me.
"as my insurance covered it because I had a known billable medical code of Deep Vein Thrombosis."

I wonder if there is a known billable code of 'Suspected Deep Vein Thrombosis."

If a follow-up US finds evidence of clotting, then perhaps the US and subsequent venography/venoplasty procedures of the IJVs should be covered under Medicare and private insurance using the above true coding, yes? It's certainly worth a try, especially since the alternative is to pay cash anyway, yes?

It is interesting about the location of the occluded stents and the difficulty of doing any bypass or reconstruction. My stents are very high near my ears. My neurologist was so concerned about the procedure and the occluded stent that he ordered an MRI to see if my brain was affected. Apparently all is OK according to my neuro. This whole issue of occluded stents and any possible affect on the brain was new to me. I've never seen it discussed here or elsewhere. Maybe it has been discussed but I just missed it.

ozarkcanoer

I think of my left jugular, which was 99% blocked. If it had occluded due to the procedure, it would be no different than how it started, and I would not expect it to have neurological sequellae other than what was already happening with my MS. If my right jugular had occluded, I would have been in trouble.

The higher up an occlusion is, the closer it is to the brain, and the fewer opportunities there are for collaterals to take the flow. You also don't want clotting to spread to the dural sinuses. Dr. Cumming had said to me that he has not had good success with CCSVI stenoses high up in the jugular. Even if they're there and they're real, it might be better to leave them alone.

I could see why ozark's neurologist would be alarmed. The higher up an occlusion is, the less opportunities there are for collaterals to form above it. There is also the risk of the clotting to spread into the dural sinuses. But if the MRI came out clear and the collaterals are there, then that is the better possibility and not the worst possibility.

I don't think we did discuss this in early summer 2010. I remember being resistant to the idea that veins could be lost, and horrified when it began happening, and then strident in warning people to get anticoagulants when we thought it must be thrombosis causing veins to occlude, and then horrified again to learn that it was the big balloons and big pressures that I had thought were so great that were now suspected of causing the increase in occlusions. Back then too the idea that one's MS might dramatically improve, mildly improve, or stay the same with a possible cessation to progression did not allow for what we learned, which was that one's MS could also worsen as a result of the procedure, particularly if the veins occluded.

I also thought occlusions were permanent, and now we are seeing some success at opening old clots in some patients (but not in others), and success with RF to open clots, and now an actual successful vein grafting thus far. Does anyone know what the odds are, if a vein graft looks good at six weeks post-procedure, that it will stay good? The immediate risk for clotting must be past?

still , I'm quite taken aback with this story.

Can we get some more information , perhaps from the Mayo Clinic , before we
run too far with this ?

" that's what he told me " ..... is a little too thin , for me.


Mr.Success

I just call that Mayo clinic and they will not connect me to that doctor or leave a message with him. Said that is not how they do things there.

dania, maybe if your primary doctor and/or IR will call on your behalf to set up an appointment and send your medical records to the surgeon? That's how it's done in NY if one wants to see a specialist, especially a busy specialist.

Good idea. I will ask Dr Arata.

Dania
Mayo also has an intake form on line, this is what they use in Minnesota for the out of country inquiries. You request an appointment, fill out the application, and send appropriate records then they decide whether they can help you.

When I first started to look for help after my vein occluded that was what they wanted.

I can't remember where this patient had his 10 angioplasties redone, and redone, again and again, do you? Who paid for them? Did his insurance pay for them too?

So many people can't get it done once, or twice to try to fix the problem, how did he get 10? Just curious. I read the article late last night. I looked up the clinic and the doctors. They do have a vascular reconstruction clinic.

http://www.mayoclinic.org/vascular-and- ... r-surgery/


CD

He was treated at Synergy Health Concepts in Costa Mesa where Dr Arata and Hewitt work. Do not know is his insurance paid for them.