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Before you schedule your venagram, discuss with your IR what will (or won't) be done. You should do lots of homework before your consultation because many doctors are finding out that we patients know a LOT more about venagrams for CCSVI than they do. Ask about stents, right vs. left entry through the femoral vein, etc.,

I had my venagram done before the July meeting in NY. The IR ignored my request to go through the left femoral vein even though I had given him the printout with Zamboni's rationale. I think he also skipped the part about looking for valve problems (since my symptoms can appear and disappear within less than a few minutes).

When I had my follow up meeting with the IR (after the NY meeting), I asked him if, based on what came out of that meeting, would he do anything different. He said he never even tried to find out what was discussed! His rationale was that, until findings are published in a peer-reviewed journal, they're just hearsay. From his perspective, that made perfect sense. But, especially since I have had no improvement, I'm upset that he didn't take a more aggressive approach based on the documentation I gave him before the venagram. He ballooned my azygos and I'm sure it's still open since my feet are no longer purple. But I got the distinct impression that he did as conservative approach as possible. Further, although the procedure gave me no benefit, my IR said there was nothing more he could do for me, at least until more was published about CCSVI - and we all know how long that is taking.

When I had my procedure. thee was only one place in town to to be treated for CCSVI. I gambled (about $4000 after insurance) that the procedure would help me. Now that there are several places in the area where I can get another, hopefully more successful, procedure, I plan to ask the next IR LOTS more questions before I schedule another venagram.

The NY meeting reinforced the fact that, even doctors with decades of experience are finding that CCSVI is a whole new ball game. Make sure you ask questions, and make sure you find out IN ADVANCE whether your doctor will do as you request. And if not, why not.

Amen.

agreed - I recently met with an IR to discuss the procedure and this is a great post!

What a wise woman you are, Rosegirl!

It is hard to imagine that anyone who is fortunate enough to secure an appointment with a doctor willing to do the procedure, would walk out. It truly is a terrible dilemma.

That is why we desperately need more doctors from which to choose! They are coming just not fast enough for any of our liking.

Have a great day, and a pleasant tomorrow,

Nicole

Rosegirl,

I hope your next procedure is much more successful. I agree, we should meet with IRs first, esp. since this is so new and there's so many possible interventions.

Question, I thought entry on the left or right side only depended on whether the person has May-Thurner's Syndrome - so does Dr. Zamboni say it should always be on the left? (I can't remember which side they say to go in for MT Syndrome)

Can someone clear this up - it seems important.

When my husband had a catheter of his arteries they went in on the left.

Thnx

Entry from the right femoral vein is a pretty straight shot. Going in through the left requires a longer path and going through more veins than with the right side. You use the left side to look for MT. I've read that most drs think that few MSers have MT, but as they do more venagrams, at least some drs are finding a higher incidence of MT (and maybe problems with other veins?).

Remember, our drs are still deciding how and where to look for problems. Some use a minimal approach and just do the jugulars. Some add the azygos. And some are finding that if you go through the left femoral vein, you find even more places that should be treated.

It's only been about 6 weeks since my venagram. There are some changes, but probably nothing that qualifies as an "improvement". I have a consultation scheduled with another IR, but I'm not rushing to have a second procedure. I want to make sure that the new dr has LOTS of experience, especially since he may have picked up some new ideas at the NY meeting last month.

selkie wrote:Question, I thought entry on the left or right side only depended on whether the person has May-Thurner's Syndrome - so does Dr. Zamboni say it should always be on the left? (I can't remember which side they say to go in for MT Syndrome)

Zamboni's IR goes in from the left.

The right is an easier "straight shot" with less curves needed to get to the azygous and jugulars. But the left gives the doc a look at the lumbar veins. Some of these may suffer from hypoplasia and be untreatable, but at least then the patient will know about them. Also the left is where May Thurner can be found in 3% of the population, when the left iliac artery compresses the left iliac vein. It is treatable in most cases.

Is there a suggested list for questions to ask in an IR Consultation?

i hope more vascular surgeons will get involved too. i just feel more comfortable about more of them getting in the ballgame. anyone know of any besides dr. mehta?