DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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DrDiana
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Re: DrSclafani answers some questions

Post by DrDiana » 5 years ago

Thank you so much, Cheer!
Somehow I missed that this (likely) change to collagen III was a 'focal' change!

One minor correction, if memory serves me right, there are tons of smooth muscle cells around arteries, but very few around veins...

If this is indeed a change in collagen (perhaps with a genetic tendency), then I would think if we can eliminate the trigger for the change, then we could eliminate the damage, perhaps? Certainly we should try to figure out the trigger in order to prevent restenosis?

I DO think we're getting closer...
;) Diana
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Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

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Re: DrSclafani answers some questions

Post by DrDiana » 5 years ago

Cece,

Until genes are located, I continue to think in terms of those "focal" changes that cheer referred to. That doesn't sound like a genetic collagen disorder. Interestingly, numerous patients with EDS (Ehlers-Danlos syndrome) have no gene for a collagen disorder, either! Yet we develop CCSVI, pelvic congestion syndrome, etc. My search is currently focused on the 'triggers' of our illnesses for clues as to what happens (likely damaging the endothelium) to cause these focal changes. The other possibilities could include -- not collagen disorders per se -- but perhaps disorders of elastin or fibrin, allowing damage to occur easier... The search continues! ;)

Thanks so much!
;) Diana
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Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

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Re: DrSclafani answers some questions

Post by tzootsi » 5 years ago

Hi Dr, welcome back! I have a very general question:
My wife has had 3 procedures back in 2010-2011 with a local IR with some success, but it seems the blockages return. She is considering a 4th (probably with you!), but is hoping to get some sense of what the chances of lasting improvement might be. From what I can gather, your knowlege and techniques have evolved from the pioneering days of a few years ago. Are you willing to share data like the approx number of cases you've treated in the past year, and what percentage have had noticeable and lasting improvements? How about for redo's? Of course I realize that every CCSVI - MS patient is different. However it would be very interesting to me (and probably others) on how successful CCSVI treatments are at this point, now that IVUS is part of the game.

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Re: DrSclafani answers some questions

Post by Robnl » 5 years ago

Hi doc,

Any new cases?

Regards,

Robert

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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » 5 years ago

Robnl wrote:Hi doc,

Any new cases?

Regards,

Robert
Hi Robert:
51-year-old Caucasian female with known multiple sclerosis since 1987. At the current time, she suffers from right foot drop, bilateral weakness and hyperreflexia of her lower extremities, some cerebellar dysfunction, dysphagia, dysarthria, memory impairment and executive processing difficulties, chronic fatigue, and urinary symptoms. She underwent ultrasound on July 18, 2013, which demonstrated findings consistent with venous outflow obstruction of the internal jugular veins.

Take a look at the images and we will discuss them after I get five commentaries.

Image
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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1eye
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Re: DrSclafani answers some questions

Post by 1eye » 5 years ago

Not qualified to comment bur #8 looks like dye went everywhere. Is this bad reflux?
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Re: DrSclafani answers some questions

Post by NZer1 » 5 years ago

Not qualified to comment either,
but this seems to me that the dye is starting higher than usual no's 1-3,
the brain stem seems to alter the flow no 3.
there also appears to be one side flowing well and the other less so no 6.
I think no 5 is showing compression?

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Re: DrSclafani answers some questions

Post by Robnl » 5 years ago

Hi doc,

Indeed it looks like the contrast fluïd is everywhere, like if it is a lot more than usual.
Sems to me that the right Side is far more flowing than the left side
Image 6 shows obstruction, must be the left jugular

Image 4, wide vein and small veins...hmm, not clear to me :mrgreen:

Image 2,is it me or should that image be more equal (left/right)?

Image 8 a lot dye, some spots more than other

Image 9, hmm dont know what it shows, sinus??
Last edited by Robnl 5 years ago, edited 1 time in total.

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NHE
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Re: DrSclafani answers some questions

Post by NHE » 5 years ago

1 & 2: It looks like flow in the RIJV is blocked and is being diverted through the LIJV.

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Robnl
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Re: DrSclafani answers some questions

Post by Robnl » 5 years ago

NHE wrote:1 & 2: It looks like flow in the RIJV is blocked and is being diverted through the LIJV.
I thought left jug is blocked, right = left on the image, right?

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Re: DrSclafani answers some questions

Post by vesta » 5 years ago

I'm not qualified to comment, but it looks like the flow on the right in image 6 is seriously blocked?

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Re: DrSclafani answers some questions

Post by NHE » 5 years ago

Robnl wrote:
NHE wrote:1 & 2: It looks like flow in the RIJV is blocked and is being diverted through the LIJV.
I thought left jug is blocked, right = left on the image, right?
In image 2, the catheter appears to be in the RIJV. However, flow seems to be backing up and going down the LIJV. In contrast, in image 6, the catheter is in the the LIJV and most of the flow appears to be going down the RIJV which suggests a blockage in the LIJV as well. Hopefully, Dr. Sclafani will clarify this situation.

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Re: DrSclafani answers some questions

Post by Cece » 5 years ago

I'm struck by the images in #5: on the left image there appears to be a valve with the flow above and below it, but in the next image it's hidden by the flow.

In #9, is the catheter deep into the sinuses, and it would be expected that the contrast would go equally out both sides of the sinus but it is concentrated instead in the right sinus? But in image #7 the left sinus looks good. In #8 everything lights up even up around the eyes? Is flow being diverted from the sinuses into the facial veins? Is the catheter misplaced? I am not sure what we are being shown in #8.

Ok now I look back at #2 and I think we are being shown that the contrast being injected into the right jugular is going up into the sinuses and then, because of a blockage between the left and right sinus, the contrast is going up even higher through alternate routes to get to the left sinus and then down the left jugular. Yikes.

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Re: DrSclafani answers some questions

Post by NZer1 » 5 years ago

In image 4&9 is that the end of the catheter that looks like a wire? To me that seems very high up and 'risky'?

The more I look at this series the more I am confused about the possibility of serious reverse flow, I am not sure of the sequences and it is leading me to assume things.

And we made the magic 5 post mark quite quickly! ;)

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Re: DrSclafani answers some questions

Post by dlynn » 5 years ago

To me it looks like in #s 1,2,3,4&6, blood flow is trying to exit by way of RIJV only. I might be completely wrong
but it looks like there is no flow in the LIJV. The other pics., I won't attempt.
My question earlier, would you consider treating a patient who had four CCSVI procedures?

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