DrSclafani answers some questions

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

Postby drsclafani » Tue Mar 30, 2010 12:59 pm

have a question. my husband had angioplasty done and had no blood thinning medication given to him. Why have you chosen to have your patients use them?


First impressions mean a lot. During my first procedure, an excellent angioplasty went on to clot. Despite two attempts to dissolve the clot over the next three days, i was unable to keep it open.

I think i have a second patient who stopped the anticoagulation and then had recurrent symptoms. Ultimately thought to have also clotted off the vein.

When angioplasty is done, the inner lining (endothelium) is torn intentionally to allow the remainder of the vein to dilate. Those tears have a propensity to clot, so anticoagulation is valuable to avoid clotting while the endothelium heals.

I am very happy that your husband did not clot his vein, although the patient I treated did not have any change in symptoms after the vein clotted.

Zamboni used anticoagulation in his series, so, as i have said before, I will follow his lead until I have sufficient experience to disagree with him and change technique.
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Postby jingerlove » Tue Mar 30, 2010 1:06 pm

Dearest Dr. Sclafani--
You cannot imagine how thrilled I was (as so many others have said here) to find a doctor who CARES about those of us living with MS. OK, so I took the first step and contacted your office through email and am scheduled for MRI's this coming Friday here at home so that they are no more than 3 months old... but how do I know if I can see you in three months time? I have no idea how to get a hold of you or how to schedule an actual appointment. I'm in Illinois but have no problem going to New York if I'm fortunate enough to get in to see you. I have family on the east coast so I'm not worried about where to stay while I'm there.

Thank you thank you in advance!
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Postby drsclafani » Tue Mar 30, 2010 1:08 pm

So . . if I am understanding this, the point of it is that the stenosed area was stiff and resistant to being stretched? I am curious if this is generally true, or if there are people who have instead floppy veins that just won't stay open. Then what?

And how on earth do you know where to look for the problems? How would you know that the malformations were confined to specific areas?

I start to wonder, if a person has a tendency to make CCSVI malformations, do they also have a tendency to make other vascular malformations? And where in the system do you start and stop looking? You know about some specific places to look, but I start to wonder if there are more places to look.

If you're going with the congenital idea, are these malformations that all happen at a particular point of development, so you know to look for those specific ones?


Dr. Zamboni, with many years of experience and careful thoughtful research, discovered that the narrowings that led to the problem were all low in the vein near the subclavian vein. There was nothing inutive about that. Just a good idea, a curious mind and a passion for veins.

I have treated many vascular malformations in my career but never one in a patient with MS. that does not mean that there may be some association between ccsvi and other vascular malformations, only that one has not been recognized.
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Postby drsclafani » Tue Mar 30, 2010 1:10 pm

1) Will an ultrasound scan show vein abnormality in the presence of collateral veins. Is it possible that the flow come out clean in the US scan even though there are issues with the veins

it certainly could. it is possible that you have ccsvi and have a "clean" ultrasound. I think that test is difficult
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Postby whyRwehere » Tue Mar 30, 2010 1:11 pm

Thank you for your answer; I just like to know the reasons behind the decisions. I don't have an opinion myself on whether to use blood thinners or not.
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Postby drsclafani » Tue Mar 30, 2010 1:13 pm

Do yout hink this test, even so it is not done with the "inteventional" bit and not yet Dpoppler can alrady reveal or hint into the direciton of a CCSVI?
menaing does it make sense to have such test and not the Doppler and not the "inteventionell method "??


I think that MR venograms show findings but are not as accurate as the catheter based diagnostic test, especially when combined with IVUS.

if i had to pick one test it would be venography with a catheter.
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Postby drsclafani » Tue Mar 30, 2010 1:22 pm

I feel that I most probably re-stenosed following the procedure. I can't afford to go back to Frankfurt [I'm in Toronto, Canada] so Im at a loss as to what I am supposed to do now. Is it possible to re-stenose that quickly? Or is it more possible that it just didn't work on me?

What advice do you give patients following the procedure in terms of restrictions, bed rest, etc. How long do you monitor patients in the hospital?


After my procedures, patients hang out and have lunch or a snack and depart about an hour or so. If they live far away, i send them to a hotel for an overnight and then they return in the am for a quick checkup.

they go home on anticoagulation for eight weeks. Other than the usual precautions related to being vulnerable to bleeding, patients are asked to stay on their medications and stay on the anticoagulation until eight weeks.

I have had a few patients who felt a bit crappy a few days after the procedure. I am not sure what that is about. Did they clot? Did they restenose? Did they have some issue with all that manipulation of their veins?

I had one patient who had a setback. however that patient was from Europe could not return to me. But if she were here, i would have restudied her and re-evaluated my options
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Postby drsclafani » Tue Mar 30, 2010 1:25 pm

I understand that this question is a bit generic but the opportunity to get an answer from someone like you is hard for me to pass.


constumenastional
i am sorry but i have no intelligent fact based answer to yrou question.
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Postby Zeureka » Tue Mar 30, 2010 2:25 pm

drsclafani wrote:
Also when I was on the diet I lost 25lbs which is good, but I was light headed all the time, now that I'm not on the Swank diet I'm no longer light headed. Would you have any idea why?
Thanks again Dr Sclafani for all your time & effort to help us, I wish there were more doctors like you around willing to help.

I wish there were more doctors like me too.your unquenchable thirst for understanding and knowledge is sometimes overwhelming.

to answer your question, i must admit that i am not a dietician. I can't even think about a diet.

let alone one named for hillary swank
I'm definitely better on a mix of the Kousmine and Swank Diet (from Dr Roy L. Swank - a diet based on high omega-3 intake => basically eating a lot of fish and omega-3 rich foods/oils/grains/fruits/vegetables and reducing saturated fat intake as red meat and full-fat milk products). Swank recommended the same diet for MS and cardiovascular disease, with encouraging study results in MS patients of his clinic. These were observational, not clinical double-blind studies, which are simply difficult to perform for a diet! And again, similar to CCSVI, there is no economic interest for the pharma industry...
http://www.swankmsdiet.org/About%20The%20Diet
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Postby pklittle » Tue Mar 30, 2010 2:25 pm

drsclafani wrote:


I have treated many vascular malformations in my career but never one in a patient with MS. that does not mean that there may be some association between ccsvi and other vascular malformations, only that one has not been recognized.


As I was reading this wonderful thread, I thought you were treating some MS patients..??
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Blood Thinners

Postby savouryourlife » Tue Mar 30, 2010 4:14 pm

Dr. Sclafani:

Sorry to go back to this topic but I have a couple questions.

Given that I wasn't given blood thinners [therefore, I guess, Dr. T. Vogl does not follow Zamboni's protocol] and given I have terrible headaches and do not feel 'healed' like so many do... Could it be possible that I clotted? This would then cause my symptoms once again would it not?

Will an eco-doppler at this point reveal any clotting? What testing should I do at this point. A cat scan of the brain was done 5 hours post procedure and all was good.

Is there any danger of any clotting in the veins that I should be aware of?

Could anything taken orally help with the clotting? I am presently taking Aspirins.

Thank you!
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby drsclafani » Tue Mar 30, 2010 4:22 pm

I have treated many vascular malformations in my career but never one in a patient with MS. that does not mean that there may be some association between ccsvi and other vascular malformations, only that one has not been recognized.


As I was reading this wonderful thread, I thought you were treating some MS patients..??


yes that does sound confusing, doesnt it? Yes I am treating patients with ccsvi that is thought to be the result of malformation of the venous outflow of the cerebrospinal circulation.

what i meant to say was that among all the patients with vascular malformation that I have treated over the past 37 years, I never treated a patient who also had MS. Moreover i have never seen a typical arteriovenous malformation in a patient who had a venous malformation causing ccsvi

sound like a legislator, dont i
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Postby drsclafani » Tue Mar 30, 2010 4:25 pm

Given that I wasn't given blood thinners [therefore, I guess, Dr. T. Vogl does not follow Zamboni's protocol] and given I have terrible headaches and do not feel 'healed' like so many do... Could it be possible that I clotted? This would then cause my symptoms once again would it not?

Will an eco-doppler at this point reveal any clotting?


ultrasound is a good way to detect jugular vein occlusion. But i prefer not to speculate on your individual treatment.
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vein elasticity

Postby hwebb » Tue Mar 30, 2010 6:00 pm

Hi Dr S,

thought I'd throw in a question about vein elasticity.

I underwent a procedure recently. I had an extremely narrow left IJV, with a stenosis which started high and penciled halfway down my neck. The IR did subtle ballooning, as was concerned that if he used a larger balloon the vein may rupture. In the end, there was still some filling of the vertebral vein.
I expect I’ll need another procedure in the near future. Is it possible to achieve more satisfactory ballooning the second time round? Now I’ve been ballooned subtley…maybe it will be possible to use a slightly larger balloon in the next procedure – so incremental dilation of this very narrow vein. Or will I be confined to minimal ballooning in subsequent procedures as the vein elasticity doesn’t change?

best regards, Helen
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Postby Cece » Tue Mar 30, 2010 6:04 pm

drsclafani wrote:I have also found that sometimes there is a narrowing in the lower area where the valve should be. I note that sometimes the catheter passes it in a way the open the valves termporarily at which time flow is brisk. Without the catheter, or with it against the wall in a different way, flow is slower and the collaterals are better seen.


Interesting! This could account for some possible false-negatives.

jingerlove wrote:OK, so I took the first step and contacted your office through email and am scheduled for MRI's this coming Friday here at home so that they are no more than 3 months old... but how do I know if I can see you in three months time? I have no idea how to get a hold of you or how to schedule an actual appointment.


jingerlove, when you contacted Holly, do you know if she added you to the waiting list? You'd have to be on that list...she is the one coordinating things...if it is fairly easy to get in for an MRI, you could wait and have one once you have a firm date with Dr. Sclafani...best of luck!! The biggest downfall for traveling from the midwest to New York is the long drive/train ride home!! (no flying on anticoagulants)
"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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