This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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!

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.

it certainly could. it is possible that you have ccsvi and have a "clean" ultrasound. I think that test is difficult

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.

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.

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

constumenastional
i am sorry but i have no intelligent fact based answer to yrou question.

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

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

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!

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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>

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

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

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

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



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)

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"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