This Is MS Multiple Sclerosis Community: Knowledge & Support

With all my respect for Paolo Zamboni, i think that there is a real battle here also.
Sclafani's work here is very, VERY important to say the least, as well as the patients efforts who are pushing hard in order for CCSVI to be researched.

Dr Sclafani, yesterday had percutaneous balloon angioplasty performed on my left and right jugular veins (in Katowice). The balloon catheter used in my case was Invatec 12x40 mm in both veins.

I was told they found that in particular my left jugular was narrower than usual, and that therefore they used a smaller balloon in my case. In fact I afterwards also checked with my room-mates and their reports all say that a 12x50 mm Invatec used in both their jugulars. I however do not understand how the length 40 versus 50 mm plays a difference - and for what reason - and not the width?

The angioplasty performed was for a pathologic valve found in my left jugular and was told also in other points to widen my jugular in general. In fact on my left side felt pressure (lightly only very low-level painful for several maybe 10-15 Minutes - and feeling of pressure lasts also still a bit today). On the right they only found small stenosis and said widened to ensure...(did not feel anything there during ballooning).

They said a stent was not necessary and that even if would have been so, stents for my size of left jugular would not currently be in their possession - if I understood that one correct from the English I understood? Would this make sense?

So my narrower jugular, is this a common/or rather uncommon issue and is this something you already came across? And different balloon catheter sizes chosen on what basis?

I still need to watch my CD to understand better what was precisely done (and we will watch that of other fellows together at the computer this afternoon as well to compare =>amended: we did not understand much from all these movies without explanation and to find the part of the opening of vein difficult - I think tomorrow will go back and ask in which part it is). 4 people same day all got angioplasty without stent in both jugulars. I could not feel the catheter moving up at all and neither did my fellows => corrected: some of them told me this evening did feel it.
But I only felt the moments of longer and repeated ballooning in my left jugular. Maybe because it is narrower than my right?

Thanks for your views on the choice of catheter size and whether overall more narrow jugulars a common issue?

I think Dr. Zamboni is talking about doing this from the top-down and we are doing this as a grassroots bottom-up movement. Both are valid and we'll all likely meet in the middle.

Top-down: research, research, research; publish; persuade other doctors; persuade heads of government (see: Kuwait, maybe Canada).

Bottom-up: self-educating patients; presenting information to unaware doctors; everyone pushing to get tested; sharing information online to empower and encourage other MSers.

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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

What you are doing here is unusual (no other doctors here) and valued.

(edited out: presumptious advice on setting boundaries!)

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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

It certainly is both unusual and valued.

Dr. Sclafani,

By all means take time off ! Thank you for the reply; common terms of discussion would be great. I have one followup; you wrote at the very end: "...suspect that those images have a duplication on each side" -- were you referring to the MR images (which are the same except for the viewing mode) or the doppler image? And what do you mean by a duplication.

Your conversation with all of us is, I think, unprecedented. I'm not sure that if I totaled all the hours I've met with my GP over the years it would equal the time you've spent online here.

regards

Indeed DrSclafani, you are unique!
But even if I compare these Polish doctors to others I know in the EU...two different worlds as regards the patients involvement in the process and explanations provided if one asks (only the English a bit a hurdle for some unwanted misunderstandings). Maybe this is also due to private clinic character and many Canadians being treated from which I now understand are more used to patients involvement than our doctors generally are? I had for the first time also a very good constructive conversation with a still rather sceptical Polish neurologist now involved in the Euromedic process on prior- and post-angioplasty checks this evening But that's then probably for another thread...sorry for deviating.

With all due respect, eric593, I think Larmo is right. The readeers on this blog read it to hear Dr. S's comments or discussions about what he has to say, not so much our thoughts about placebos.

Try the thread "How Can We Design A Trial To Test The Efficacy of This surgery". I also happen to know that Dr. S is reading this and other similar blogs for ideas about his studies. (How he finds the time..????!!)

Thanks FD, I knew you would understand.

also, Larmo has an army...with all due respect, might makes right.

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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

Dr. Sclafani or anyone else,

Can anyone please tell me what you can see on the Doppler test and what you can see on the MRV?
Can the Liberation Surgery be done without a Doppler and only a MRV with the same results?
Is MRV the same as venography?

Which one tests for blockages in the neck?
Which one tests for blockages in the chest?
Which one tests for blockages in the abdomen?

I would really appreciate this information.
Thank you

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PWS

Yes, I have been using cutting balloons too. These high pressure noncompliant balloons have four bars of metal parallel to the long axis of the balloon. They were designed to "crack" hardened parts of arteries and allow the blood vessel to dilate when the balloon is completely inflated.

They were not made for veins but given the challenges in dilated abnormally stiff valvular structures, I started using them and found them to be helpful in getting improved diameters of the narrowed areas of the blood vessels.

Unfortunately they only come is sizes up to 8 millimeters and are thus inadequate in some some vessels that are larger in size.

Dr Sinan has told me he is using a valvulotomy device to cut the stuck or stiff valves. I am looking into that recommendation but havent used it since I AM STILL ON THE FREAKIN SIDELINE.

Injury to blood vessels occurs when one performs angioplasty/venoplasty: when you stretch the vessel wall it has some tears. otherwise it cant get larger. When you expose the inner part of the blood vessel, the collagen) to circulating blood products, the body, that magnificent highly developed instrument, recognizes that the wall is injured and a variety of mechanisms act to prevent blood loss.

When the platelets contact chemicals in the wall of the vein or other clotting factors in the area, they are activated and become sticky and clump together. They change shapes forming leglike extensions and they excrete chemicals into the surrounding blood.

Activated platelets will adhere to the collagen that is exposed by the tears in the inner lining of the blood vessel. Aggregation and adhesion act together to form the platelet plug. Myosin and actin filaments in platelets are stimulated to contract during aggregation, further reinforcing the plug. On this plug other clotting elements adhere as well.

Thus the body has sealed the breach.

However that clot causes turbulent flow and in some cases that leads to progressive clotting of the blood vessel. To much leads to thrombosis. that is not what we are trying to do when we balloon dilate a blood vessel.

So this delicate balance between clotting and nonclotting has to be managed. We certainly dont want bleeding and just as much we dont want the vein to clot off.

Some physicians do not use anticoagulation when there is a high flow state to keep things from getting too turbulent.

So better living through chemistry...with thanks to Big Pharma

We can inhibit the platelets so that they do not cause too much platelet aggregation....aspirin, plavix, ibuprofen, and others
We can reduce the amount of clot that forms.....coumadin, heparin, lovenox, fondaparinux

Many regimens exist, each has value and risk.

Personally, I was very affected by my first impression during liberation on my first patient who had an incomplete duplication of the jugular vein. Angioplasty seemed to work really well. As she was my first patient, she was kept in the hospital overnight. On the next morning without any change in her condition, a extracranial ultrasound (ECU) was done and it showed that the vein had occluded.

So we resorted to another class of drugs, thrombolytic agents, that dissolve clot. After a few hours, the clot did dissolve. Unfortunately by the next morning, clot had reformed. A second round of thrombolysis failed.

So,,,,do i use drug therapy to prevent clot formation. DAMN STRAIGHT.

I started by treating with a rapid acting anticoagulant like lovenox or fondaparinux and then converted to coumadin for two months.

But patients didnt like it, so i have backed off, using only the short acting drugs that are injectable for 2-3 weeks. I have stopped using coumadin because of its longer acting effects that are not as easily reversed and the short acting ones.

I hope that helps

Lets not have rancor among the troops. we all have a common enemy. I brought up the discussion of trials on many fronts after i was asked to develop my IRB proposal. This discussion is ok with me. I do want to hear patient's point of view on these things....to a point.

those cool videos don't show the terrible cost that occurs removing them. They have to vent off the coolants when they shut down the magnet and it costs quite a bit of money to start up the unit again.

IT IS VERY IMPORTANT TO REMOVE ALL METAL, KEYS, NECKLACES, ETC BEFORE GOING INTO THE MR SCANNER. SOME OF THE PATCHES USED FOR DRUG DELIVERY, LIKE THE NICOTINE PATCHES, CAN GET HEATED AND CAUSE INJURY TOO