DrSclafani answers some questions

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

Postby SCGirl » Mon Jul 19, 2010 5:35 am

Dr Sclafani -
You gracioulsy agreed to view my images from my venogram and angiogram. I sent them to Holly via e-mail but she was not sure you would get them. How would you like me to send them to you?
Thanks!
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Postby Rokkit » Mon Jul 19, 2010 7:57 am

This symposium is fantastic. I can't wait to hear how it's been going in Kuwait. Every speaker is absolutely exciting. Too bad those extra 50 seats can't be filled with neurologists. I wish it could be broadcast live over the web, at least the audio. Excellent job, Dr. Sclafani. Your time on the sideline has enabled you to organize an enormously important event.
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Postby vivavie » Mon Jul 19, 2010 8:40 am

It is still early but maybe after the seminar, (if for privacy reasons you can't give names), would it be possible to let us known if someone from Canada (better yet Quebec) was at your seminar? I did try to send the promo to as many IR I could here...

Will it be videotape?

As for your question about follow up: Drs here including GP and neuro are afraid they will lose their licence if they get involve. So basically until I get sick enough to go wait 48hrs at the emergency room, no follow up is possible.

Because of my father (retired in May) I was able to get a Doppler (which I sent you last week). The technician said it looks good!?!?? When I mentionned your symposium his answer was: "we do the test better here and we don't get the same results as Zamboni". Isn't that something!!!! We are a banana republic...

I am still searching for your clone in Qc!
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Postby Algis » Mon Jul 19, 2010 8:44 am

Please find someone to have it video'ed - I can setup a broadcasting channel if I have the videos. Size/duration is not an issue :) Even a website for it would not be an issue.

We hope / wait so much from it...
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Symposium Publicity

Postby MS_HOPE » Mon Jul 19, 2010 8:54 am

Dr. Sclafani, I'd posted information about your symposium (for medical professionals) as one of the comments to the NY Times article, but after it appeared, it was taken off. I assumed you or your staff had requested that it be removed, possibly because of concerns about a potential over-response and crowding.

At this point it's unlikely to get many, if any, reads, but would it be OK if I or someone else posted it again? (I understand you still have 50 or so available seats?) Thanks.
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Postby bestadmom » Mon Jul 19, 2010 8:57 am

The CCSVI Alliance is hoping to tape the event and use segments for our website.

Thanks Cece - now my "cover" is blown, not that I've got anything to hide!
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Postby Sotiris » Mon Jul 19, 2010 9:05 am

Algis wrote:Please find someone to have it video'ed - I can setup a broadcasting channel if I have the videos. Size/duration is not an issue :) Even a website for it would not be an issue.

We hope / wait so much from it...
According to a previous post it will be videotaped: http://www.thisisms.com/ftopic-10680-da ... -2556.html
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Postby L » Mon Jul 19, 2010 9:21 am

Algis wrote:Please find someone to have it video'ed - I can setup a broadcasting channel if I have the videos. Size/duration is not an issue :) Even a website for it would not be an issue.

We hope / wait so much from it...


I can master the audio (I'm a mastering engineer..)
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Re: WARNING

Postby Cece » Mon Jul 19, 2010 10:17 am

LadyGazelle wrote:***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.

I don't think he wants to be in a position where people are going back to their doctors and IRs and saying, "Dr. Sclafani on the internet says...."

Besides possible offense to your doctor, I worry that he'll put himself at risk of legal liability here somehow.

He may well be able to answer this request for what the correct testing prescription must include. But I think this could be found also within Dr. Zamboni's research? He must have spelled out how he did the transcranial doppler? I can find a link if it would help.
"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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Re: those dang deltas flow again

Postby JohnJoseph » Mon Jul 19, 2010 12:53 pm

1eye wrote:Please tell me if this is a boring topic, maybe but somehow I don't feel bored.

Perhaps in an effort to be objective, the "why" got left out. It may be obvious to some but not me.

Do jugulars collapse because they are floppy and lay flat? In that very-low-pressure environment, that would happen slowly, if the veins were floppy. Just a gradual shift, on account of the very light wall weight, and the relative absence of gravity's pressure keeping them 'patent'. Kind of like a liquid, spreading out flat on the floor when there's no container any more?

At that time, since gravity is less of an influence, we would have to rely on other pressure to get the fluid down. The vertebral veins are more narrow. So is there more pressure on them, to get similarly large volumes of blood through the narrower channel in the same time? Is any of it negative pressure?

Seems like a gizmo like IVUS would be useful, a tiny strain guage measuring very very localized pressure, with ones for arteries and ones for veins. And while we're at it, a very very small Doppler probe. IVDUS.

What am I driving at? I am trying to understand flow changes. Plus I am still interested in the lying-down change, because I wake up feeling worse than when I went to bed, and as soon as I sit up, better. And I am also intrigued by the 3D vein images with ballooned veins above the stenosis. Age and gravity may cause loose vessels, when they are under pressure, to change shape over time. But these really look blown up like a balloon.

I am getting something wrong? Yes; NORMAL is for the jugulars to be OPEN when you are lying down, and SHUT when you are standing up. When you are lying down, MORE bloodflow goes through the jugulars, (LESS through the spinal column path?). I can't understand that. If the path is more open, there should be less velocity, too. I wake up feeling like my brain has been shut down for 7 hours, not asleep. If you'll accept Bill Gates' terms (asleep and shut down -- does it have to do with oxygen?).

Why are these vessels used more when we lie down? We lie flat, they inflate. Counter-intuitive to me. The flow would slow. That's when they should collapse, when less gravitational pressure is forcing liquid through them, and more pulling the top wall down toward the bottom. Is it because the vessel just works that way, and top and bottom attachments assure that? Is it maybe because we are lying down on the other path? Or because it changes somehow, pinching off the vertebral path? What happens when the poor sod has problems in both? Aaack. Evolution seems to have me extremely baffled.

Maybe there's a function being done while we lie down that's more important, and requires more flow in a certain area? Like unconscious vigilance to predators?

What's supposed to inflate my jugulars when I lie down? Even if it isn't doing that in my case. Why is what's supposed to be normal, normal at all?

Please do not bother with this if it is too scattered. Loss of cogneetoes does that to me sometimes. I know this must be second-nature to someone looking at them through fluoroscopes. Also if it will all be clearer after I read the paperback version. :-)

1eye, I feel I need to join you in questioning the physics behind the flow variation through the IJVs.
We all have learned here what the normal variation to expect in a healthy person is - but what is the hydraulic reasoning behind?
In fact this is what has caught me about CCSVI - the HYDRAULICS of it: If it is "just" a mechanical problem in a hydraulic system of drainage tubes and valves, so there should be a good chance of fixing it by a suitable "plumbing" !
Dear Doc, would you have any nutritive comments on the physics of this flow variation phenomena in IJVs?
Few of us here could possibly sleep better then...

Thanks once more, all the best for the symposium
JJ
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WARNING

Postby LadyGazelle » Mon Jul 19, 2010 1:55 pm

Lady Gazelle in red:

***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.

Cece:
I don't think he wants to be in a position where people are going back to their doctors and IRs and saying, "Dr. Sclafani on the internet says...."

Besides possible offense to your doctor, I worry that he'll put himself at risk of legal liability here somehow.

He may well be able to answer this request for what the correct testing prescription must include. But I think this could be found also within Dr. Zamboni's research? He must have spelled out how he did the transcranial doppler? I can find a link if it would help.


BELOW IS SOMETHING I had found earlier from Dr. Sclafani:

Regarding the "pre-liberation" tests: There are pros and cons for each kind.

The doppler is non-invasive and cheap, but it MUST be done by someone who is properly trained. What it will show is where blood flow goes (or doesn't go). It's not great for pinpointing the location of blockages in the jugulars, and it can't look at the azygos vein at all.

The MRV looks for blockages in both the jugulars and the azygos, but won't find the telltale reflux or backflow of blood. That's an important distinction since some people don't have blockages -- but they do have problems with a valve in a vein or with a flap within a vein that causes reflux. And since it exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram.

So, which ever way you go, be sure to deal with a doctor who understands the full significance of each test and what it will -- or can't -- show.

Another subtle but important point that's just come out this month is which side to insert the catheter to do the venagram. Most IRs choose the side that gives the straightest path. Zamboni says to use the other side since it is more likely to find problems -- precisely because it isn't a straight path. Remember, they're looking for kinks in veins, blockages and the more convoluted the path, the more likely they are to find a problem that would otherwise be missed.
If your doctor uses the wrong technique (which is still rapidly evolving), you'll just get a bill and no results!

Another example of why a doctor needs to be up-to-date about CCSVI is that the catheter may hold open a valve that is normally stuck shut, and then the problem gets missed. Or it may miss a flap that divides the vein (because it was threaded through one side of the flap).

For me, that would be completely devastating. For others, you may need treatment more than I do and it's worth the risk to get treated ASAP.

Since those of us who are rabid (and desperate) may actually know more about the finer points of CCSVI than our primary care physicians, having this kind of information is critical. Yes, angioplasties and stents have been around for decades and are considered quite safe. Just be sure you deal with a doctor who will do the necessary research so you get the best possible results.

So, Cece, I guess "I'm rabid and desperate" and missed that answer.

I need to be sure to get a Transcranial Color Doppler first, "And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."

Well, that would be ok for me if I knew beforehand that a TCD was absolutely necessary and insist on it when the technician told me it wasn't necessary. I just talked with the IR who said he wants me to go to Albany or someplace where they know what they're doing.

Can you understand my frustration? I called to get "rescheduled" for a Transcranial Color Doppler because the technician didn't follow the Rx from my PCP who is out of town all week.

That way, I will have the test done and send the CD to someone close to Rochester, New York requesting to be liberated!

I hope this post clarifies what others need to request from their doctors.

LadyGazelle :wink:
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Postby Renoandi » Mon Jul 19, 2010 1:58 pm

Dear Dr. Sclafani,

I am sorry if this question has been asked elsewhere, but looking through all of the threads is hard for me.

I am wondering how CCSVI affects the spinal cord? Would the azagos vein be the reason with refulx and leaving iron deposits in the spinal cord.

I ask because all of my relapses have been due to spinal lesions. I understand how the refulx in the brain works, but have not seen anything really addressing the spinal or cervical cord.

Even in all the drug studies and trials they only look at the brain, which I don't understand. The spinal cord does a lot of damage in MS, yet I don't read or hear much about that.

Thank you for all you are doing to help get proper information out there,

Sincerely,
Andrea
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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DOPPLER PROTOCOL

Postby drsclafani » Mon Jul 19, 2010 7:50 pm

LadyGazelle wrote:Dr. Sclafani,


[b]***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.[/

LadyGazelle


1. transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.


DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC
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Postby drsclafani » Mon Jul 19, 2010 7:57 pm

nancymno wrote:
Cece wrote:
drsclafani wrote:I am glad for all who have shown improvements. Wonderful.

But going on with your life should include surveillance to assure that restenosis does not result in recurrence.

So can you tell me, how you are being tested for this

doppler? MRV? clinical examinations?

how often?

Who is following your progression?

Are you compliant with followup advice?


Thanks

Good questions, hopefully everyone will come along with some answers.... :wink:

I am scheduled for August 24th (can't wait). The plan is to do Doppler ultrasounds at 3, 6, 12,18 and 24 months in my own location. Is that sufficient?


I think that this is a very reasonable approach to surveillance. One could argue that a one month followup would be helpful too because so many people seem to have very short term deterioration. Of course i think that if your symptoms recur or worsen, one should get a ultrasound alla zamboni sooner. We want to catch the recurrent stenosis early, not late. NO ONE NEEDS TO HAVE AN RELAPSE IF WE CAN AVOID IT!
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Postby drsclafani » Mon Jul 19, 2010 7:59 pm

SCGirl wrote:Dr Sclafani -
You gracioulsy agreed to view my images from my venogram and angiogram. I sent them to Holly via e-mail but she was not sure you would get them. How would you like me to send them to you?
Thanks!


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