ANOTHER doctor on board

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

ANOTHER doctor on board

Postby CCSVIhusband » Thu Jul 15, 2010 2:24 pm

Again, I'm not saying where or whom ... (please don't bother to ask).

But today we met with a new doctor in follow-up to my wife's liberation 3 weeks ago. Sat down and talked for almost 2 hours with him (more about May-Thurner specifically) but he knew all about CCSVI, had been to many meetings where CCSVI was discussed, but had yet to meet a patient who had it done (though he knows several of our doctors doing it). Anyway, so we discussed the procedure, the results, and just talked CCSVI for those 2 hours.

He is now going to be following my wife's situation (we feel the May-Thurner re-occluded and he did as well). So she'll be having another venogram. At the same time, since he's never treated the azygous/jugulars as it relates to CCSVI ... though he said this concept and procedure are so simple compared to what they normally deal with ... he's going to have a look around and make some CCSVI contacts.

He said a lot of very interesting things I thought ... but he also said this (CCSVI) is a very talked about and exciting topic in the vascular world. He was very interested in the results we've seen, trying to relate it to vascular issues and learning from us more than anything else in the meeting.

As for the May-Thurner ... a stent is going in when we schedule the procedure. He also agreed with several of the comments I made in another thread recently about how blood will flow/not flow through different venous systems if there is issues such as May-Thurner ... it turns out, I actually know my CCSVI pretty well.

All good news.
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Postby ozarkcanoer » Thu Jul 15, 2010 2:39 pm

Good work CCSVIhusband !!! You've got some real momentum going. I'm glad to hear your wife is going to be treated for her May-Thurner. I can't wait for the day when all this can be out in the open and not treated like some back-alley third world medicine. But it is great that the vascular doctors and IRs are coming on board.

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Postby IHateMS » Thu Jul 15, 2010 2:41 pm

great.... hopefully doc is in pitt area.... a short drive for us!!!!!!!!!
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Re: ANOTHER doctor on board

Postby Cece » Thu Jul 15, 2010 2:52 pm

CCSVIhusband wrote:He said a lot of very interesting things I thought ... but he also said this (CCSVI) is a very talked about and exciting topic in the vascular world.

That is good to hear. I still remember Dr. Sclafani's description of how everyone just stared at him the first time he brought up CCSVI to colleagues in a meeting.

This is a huge discovery for the vascular guys. And how often does the chance to do a simple new procedure and change a life this dramatically come along!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CCSVIhusband » Thu Jul 15, 2010 3:04 pm

IHateMS wrote:great.... hopefully doc is in pitt area.... a short drive for us!!!!!!!!!


Don't forget we also have a lake house in a neighboring state ... unfortunately, it's closer to that than Pitt ... but probably still not a long drive from wherever you are.

I'm using up my vacation days really quickly this year - but it is all worth it!

I advocate going "local" ... but I guess my definition of local might differ than others ...
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Postby JCB » Thu Jul 15, 2010 8:33 pm

At this point going local is anywhere in the US. If we can get enough Vasclar Surgions and IR's talking, the paradigm will start shifting. Until that time some of us may have to travel a little. The more of us that are Liberated the faster it will happen. When Dr.'s start seeing the results like your wife I believe they will jump on board. Thanks for sharing the update.
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Re: ANOTHER doctor on board

Postby CureIous » Thu Jul 15, 2010 8:53 pm

CCSVIhusband wrote:


He said a lot of very interesting things I thought ... but he also said this (CCSVI) is a very talked about and exciting topic in the vascular world. He was very interested in the results we've seen, trying to relate it to vascular issues and learning from us more than anything else in the meeting.

All good news.


It's people like you who are breaking the dam, one vascular surgeon at a time. When they start collaborating together, it's a force to be reckoned with. Shame too as patients we have to use terms like "force to be reckoned with". Shouldn't have to use "force" at all but it's obvious that a good number of establishment neuros have taken the gloves off. Game on I say....

Nice work.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby 1eye » Thu Jul 15, 2010 10:06 pm

Word of mouth. Us, our kids, their auntsunclescousinsgrandparents, our friends. The mailman. The paper boy. That's how this thing will happen. These guys are not gods, just very good, very smart, hard-working people. They need help in connecting, maybe. I don't know. All in the same boat.

Drops of water turn the mill; singly none. Other such platitudes. Feels good to be working on the problem, though, rather than moldering away in a corner because of another outbreak of contagious pessimism, doesn't it? For me it feels good to Know My Enemy. Even if I don't beat it, I know where it lives. Shazam! Out, spammed dot!

Rust Never Sleeps...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby CCSVIhusband » Fri Jul 16, 2010 3:45 am

I remember a few more comments the doctor made. They interested me (but like I said, we were educating him too in a lot of ways).

He continued to make reference to doing work on dialysis patients and some abnormalities he's seen.

He mentioned that some people have a completely occluded IVC yet don't have MS, but then DID concede that it would be VERY BAD if you had an occluded Left Common Iliac Vein AND an occluded Azygous Vein because the blood would be put through one detour (along with a bunch of other blood) around the Iliac blockage, and then it would basically get caught up in a HUGE TRAFFIC JAM (all that blood with no way back to the heart). - he was funny with his trying to dumb down medical terminology.

He seemed skeptical about CCSVI at first (to tell you the truth) ... like I said he hasn't met any patients before us - but did sit in watching one procedure done at his hospital (there have been several now). But then as we told him, hey this is where lesions were, this is what previous symptoms were, this is what veins were impacted in my wife's case, this is what symptoms abated ... he started putting two and two together and said a lot of "yeah, that makes sense".

He did keep saying ... this concept is so simple, I'm no neurologist but it makes sense as it relates to blood-flow causing "some symptoms very similar to MS". He also kept saying that the procedure is "easy", the hard part is finding "everything". He did say getting into the azygous is probably the hardest part - and that most IRs don't spend a great deal of time there in their workings.

We had a good laugh at the expense of neurologists going to medical school to learn to say "I don't know" a lot.

I really wish I could remember more ... but I didn't sleep much since our new kitten loves getting all up in my face at 4 AM - every morning and finds that to be an appropriate time to play.
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Postby sbr487 » Fri Jul 16, 2010 4:03 am

CCSVIhusband wrote:We had a good laugh at the expense of neurologists going to medical school to learn to say "I don't know" a lot.


They spend so much time to say "i dont know" in a sophisticated and convincing manner. Its like in the college days when you take a simple topic and add terms like "heuristics", "algorithms", "pseudo-random" and make it look like real sophisticated topic :)
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Postby Rokkit » Fri Jul 16, 2010 7:33 am

CCSVIhusband wrote:He did say getting into the azygous is probably the hardest part - and that most IRs don't spend a great deal of time there in their workings.

I know this is just one comment from one doctor who is very new to CCSVI, but it's the first thing I've heard that could explain why doctors aren't finding azygous involvement anywhere near as often as Zamboni did.
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Postby CCSVIhusband » Fri Jul 16, 2010 7:50 am

I meant that in response to day-to-day operations (not related to CCSVI) ... but that it's just not a vein they normally are spending a lot of time focused on.

Hope that clears it up.

Since they're generally not familiar with it, they probably also don't focus on it with regards to CCSVI as well ... even Doctor Sclafani said it took him a considerable amount of patients and learning before he started to find issues in there and image it properly.
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Postby Rokkit » Fri Jul 16, 2010 7:59 am

Yeah I'm just thinking if it's hard to get into then it's not the low hanging fruit. That could have something to do with the lower prevalence. Or not. :wink:
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