Vascular Access Centers open house and CCSVI info session

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

Vascular Access Centers open house and CCSVI info session

Postby SammyJo » Mon Mar 14, 2011 9:34 pm

Landover, MD 3/23/11



I am very pleased with my 3rd CCSVI procedure at VAC, and am posting this for those that live in the Maryland area. I strongly recommend that you make an effort to find CCSVI treatment as close to home as possible!

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Join us for this unique opportunity to learn more about Chronic Cerebrospinal Venous Insufficiency, its relationship with Multiple Sclerosis and your treatment options at Vascular Access Centers.

Our discussion will be lead by Robert Worthington-Kirsch MD. Dr. Worthington-Kirsch has more than 20 years experience as an Interventional Radiologist treating vascular disease. He is also trained and experienced in the McGuckin Protocol for diagnosing and treating CCSVI-related malformations of the Iliac, Renal, Inferior Vena Cava, Azygos, Superior Vena Cava and Internal Jugular veins.

Refreshments and appetizers will be served for your enjoyment.

Please RSVP via Facebook, email APrice@vascularcenters.com or call 410-207-9582.

http://www.facebook.com/event.php?eid=109105759170303
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby Cece » Tue Mar 15, 2011 8:39 am

I have been hearing more about McGuckin lately. "McGuckin Protocol" - what do we know about McGuckin's techniques? (I don't know anything! How distressing for me. ;) )

SammyJo, congrats that your third procedure has gone well.

It is also of interest to see all the other veins named. Azygous and IJV are the main CCSVI veins, iliac is involved with any secondary conditions that might reroute flow to the azygous, complicating the situation there if it is blocked, but we have not heard about renal, inferior vena cava or superior vena cava having blockages or affecting CCSVI. (CCSVIhusband, you've raised concerns about these other veins, maybe Dr. Kirsch has a different answer.) (Along similar lines, someone posted over on Facebook today that Dr. Arata told her this morning that he is treating the hemiazygous in a third of the patients he sees??? We have not heard that it is necessary to look at the hemiazygous. Dr. Sclafani has discussed it, I forget the reasoning though....)

Thank you for posting this and I too urge people to go local if the local doctor is experienced and is aligned with your beliefs on things like anticoagulation, use of stents, size of balloons, and other risk tolerance concerns.
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Postby mavis » Tue Mar 15, 2011 5:34 pm

Thanks Sammy Jo.

I keep hearing Dr. McGuckin's name more and more but mostly on Facebook. He was also mentioned in this thread.

http://www.thisisms.com/ftopict-15581-rfa.html

This might be an answer for many people, who knows?
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Postby CCSVIhusband » Tue Mar 15, 2011 5:48 pm

Cece wrote:I have been hearing more about McGuckin lately. "McGuckin Protocol" - what do we know about McGuckin's techniques? (I don't know anything! How distressing for me. ;) )

SammyJo, congrats that your third procedure has gone well.

It is also of interest to see all the other veins named. Azygous and IJV are the main CCSVI veins, iliac is involved with any secondary conditions that might reroute flow to the azygous, complicating the situation there if it is blocked, but we have not heard about renal, inferior vena cava or superior vena cava having blockages or affecting CCSVI. (CCSVIhusband, you've raised concerns about these other veins, maybe Dr. Kirsch has a different answer.) (Along similar lines, someone posted over on Facebook today that Dr. Arata told her this morning that he is treating the hemiazygous in a third of the patients he sees??? We have not heard that it is necessary to look at the hemiazygous. Dr. Sclafani has discussed it, I forget the reasoning though....)

Thank you for posting this and I too urge people to go local if the local doctor is experienced and is aligned with your beliefs on things like anticoagulation, use of stents, size of balloons, and other risk tolerance concerns.


Thanks for the credit Cece ... glad to know people are finally seeing I was on to something!

I wish I could post all the stuff I've drawn up ... which veins flow to which veins all the way through the body - and which veins are affected when a blockage is found - and how flow is rerouted. Then how it relates to the nerves in that area, and which areas of the body are affected by that 'potentially' ... (I have a wall of that stuff) ...

But I'm not a doctor - just an engineer, so I have to wait for them to verify and prove what I say (though, most have agreed with a lot of it in my talks with them privately).

I've never been in contact with Dr. McGuckin ... (nor do I know much about him either) ... I've got some research to do apparently!
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Postby Cece » Tue Mar 15, 2011 7:50 pm

Just put that disclaimer on it when you post it, CCSVIhusband! It sounds like you've put some definite work into it!

So some of McGuckin's ideas are to use radio-frequency ablation on occluded stents and to forego the pre-procedure ultrasound because people need to have the full catheter venogram anyway because there are veins that can be missed on the ultrasound.
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Postby Drury » Tue Mar 15, 2011 9:21 pm

Thanks everyone for the info and for being there to show the way.
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Postby CCSVIhusband » Wed Mar 16, 2011 6:19 am

Hopefully Cece re-finds this ... I know we're having an ongoing discussion that nobody else can follow across about 7 threads.

But my wife made an interesting comment to me last night ... and it semi-relates to this.

Though the conversation was a bit longer than this ... I'll give you the general highlights (won't bore you with discussion of our cats being bad, or the news, or Seinfeld - because the conversation drifted in and out between each of those)

We were laying in bed probably about 10:30 ... and she kind of looked over at me and said "I can feel my blood flowing in my neck."

I asked her what she meant by that.

She said, "well, I can feel where the blood pumps in my neck, when I lay down. I can feel where it was ballooned, and the blood flows past it ... kind of like when you get done running or lifting and your blood is really pumping and you can 'feel it'. Have you heard of this before?"

I said "no ... but it doesn't surprise me. The balloons do a lot of damage to the veins, so I'd imagine there's still injury to them and you SHOULD feel it, but what exactly do you mean?"

She said, "well, I can feel it (she pointed to where on both sides of her neck) ... and said, I can feel it like being sucked down into my chest."

I said "I THINK that's a good thing. That means there's flow, and like I've told you, when you lay down, all of a sudden your nose and extremities get warm and your color gets so much better ... so I'm not surprised your flow is better when laying down, after your jugulars are opened up."


Has anyone else had this feeling?

I just thought it was really interesting she could feel it ... and that her hands/nose continue to warm almost immediately after laying down and letting her jugulars open.


On the note about the disclaimer Cece ... yes, I know. :) ... I suspect a lot of doctors will be proving it in time ... I just like doing some of my own research and musing and trying to tie things together.

Regarding the azygous ... I think as we go along, we're going to see it's so VERY critical in the whole realm of CCSVI. I'm convinced it's still under-diagnosed (even by the best of the doctors). I think that's going to be the vein that gets the most results too for people. I say this with a lot of anecdotal stories, but also with a lot of reaching out to people privately and discussing results, techniques, etc - both patients and doctors. I think/hope for Loobie he'll have something there ... and I DON'T think it all necessarily ties to leg issues as some would have you believe. I think it will prove to be more than that ... as suffocating the spine (by deoxygenation resulting from poor flow) which ties in to the brain will give results of things like fatigue, and many others (I'd speculate even vision, etc - especially l'hermittes) will be reduced by improving the azygous.

I think Dr. McGuckin is on to something with the other veins ... I think if CCSVIers (formerly MSers) have issues in a few main veins, why would it just stop there? Wouldn't vein development across the board be impacted (again, speculation - which I'd tie to Vitamin D deficiency - I fully admit there is something to Vitamin D deficiency ... what with the regions CCSVI is more common to, the whole Middle East/burqa and development of MS/CCSVI there ... the births of babies in late spring/early summer being more prone to MS) it's only logical ... but those veins aren't as "critical" to the spine/brain - and I don't want to stray from CCSVI into other areas as much either (it's critical we get the initial part down before we expand, and give "skeptics" something new to latch on to). The IVC I've speculated about before. I think we'll have answers soon ... the hemi-azygous hasn't got much publicity, but I've heard of treatment here before as well in my conversations and dealings.

Anyway ... very interesting stuff, and days ahead.

This IS CCSVI
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Postby Cece » Wed Mar 16, 2011 8:01 am

I found it. Two month-long, seven-thread conversations are just the way I like them. :)

Did your wife have any issues with her vertebral veins, CCSVIhusband? I know she had the untreated azygous issue. With posture being such a factor, I wonder if she could have drainage issues while upright but not while lying down now? I am not experiencing what you describe (with the feet warming up soon after lying down), that's really interesting.

With the many veins to be checked, I think the big ones that something can be done about are our jugulars and azygous. Then comes any connected veins down by the azygous like the iliac, that should also be checked, especially in someone with spinal cord lesions.

I am currently with-holding judgment about if any other veins should be checked. Dr. Sclafani did check my ascending lumbar veins, which were in good shape. One nice thing about the inferior or superior vena cavas is that, if anything were found there, at least they are nice big veins that can take ballooning. Our verts and the ascending lumbar veins are too small for ballooning, possibly the renal and hemiazygous are too?
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Postby CCSVIhusband » Wed Mar 16, 2011 8:13 am

Her ascending lumbars were checked and fine - you can see them in a great picture posted by Dr. Sclafani.
Her renal was checked and fine.
Her jugulars were checked and ballooned (obviously).
Remember she had May-Thurner ... again that was checked on 2nd appointment and still fine.

Her azygous, we know the issue.

So ... back to my point that, when humans are upright some very high percentage (I can't remember exactly at the moment and my notes are at home) of blood is below heart level. Thus the need for the azyogous is significantly greater when upright, which, isn't that - for most of us - at least 66.7% of the day? (16 hours)

It's only logical from an engineering standpoint that vein be needed to pump blood below the heart.

For those who have major jugular problems, the problems obviously occur when laying down ...
Yet the azygous - is still important then as well because it's carrying blood from the spine regardless.

Thus, my assertion the azygous is still being under treated (most IRs admit to never seeing one before CCSVI came about) ... and is going to be a verrrrrrrry big piece of the puzzle before it's said and done.



Finally, I have my reasons (legit reasons) to believe that other veins come into play regarding CCSVI ... but again, I don't want to distract anyone from what is coming out about CCSVI from INSVD, and what we already know ... because I think people like Dr. McGuckin will get that through to others ... and maybe it's technically not CCSVI related ... which is fine ... but it certainly ALL is vascular related.
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Postby Cece » Thu Mar 17, 2011 7:14 pm

The azygous is a challenge compared to the jugulars, I agree that it is likely to be undertreated depending on the skill of the doctor. (And I'd forgotten about the May thurner! Very glad to hear that is holding up.)

Where were we... :)

Dr. McGuckin had an abstract released in conjunction with ISNVD, it's a case study of a successful treatment of a thrombosis after a prior CCSVI procedure.

http://ccsvism.xoom.it/ISNVD/Other/Abst ... guckin.pdf

I still don't know what the "McGuckin Protocol" means or how it compares to the "Siskin Protocol" or "Dake Protocol" or, personal favorite, "Sclafani Protocol"....
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Postby Cece » Thu Mar 24, 2011 4:34 pm

Anyone make it to the VAC open house?

here's a little more info on Dr. McGuckin:

http://www.youtube.com/watch?v=ogr1hAeK ... o_titleour

This was just posted by Tarah, a patient treated by Dr. McGuckin, and it shows him after her procedure going over what was done. He seems likeable, doesn't he? The diagram of the body is simple but effective in conveying where ballooning was done. He talks specifically about going into the IVC and checking out the kidney veins.

His protocol includes Plavix and aspirin taken together for the postprocedure anti-clotting regimen. 16 mm was the biggest balloon size he used. Not sure how high he'd go or what the size of the vein was to know how oversized or just-right-sized that might be. Both Dr. Cumming and now Dr. Sclafani have raised some concerns over the bigger balloons that had become more standardly used; they might increase the risk of thrombosis according to drsclafani or intimal hyperplasia according to Dr. Cumming. But at 16 mm, Dr. McGuckin doesn't seem to have gone too big, although again that would depend on the size of the vein. I am slightly concerned because he used 16 mm balloons in both veins and what are the odds that both veins were the exact same size, if he was measuring the veins and choosing balloon size based on that?

I think anyone considering Dr. McGuckin who watched the video will find themselves reassured with the choice, he comes across well. :)
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