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Cece wrote:(no flying on anticoagulants)

Cece, where did you get this? Lot's of people have/do fly while they are taking anticoagulants.

drsclafani wrote: 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.

Dear Doctor Sclafani, can you please clarify? I thought that stenosis is to be found anywhere down the jugulars and also in the azygos. In fact Dr Dake has found problems high, at about ear lobe level.
In my case, (always according to the radiologist) doppler showed severe stenosis in both IJVs but mostly in their middle part in all positions. Supine, 45 degrees and 90.
In fact the only part where some flow could be seen (that blue particles i suspect) was at the lower part, near the subclavian vein
Did i missunderstand your reply ?

For all others:
I change the "ALL" word in uppercase just to highlight.

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.

I would wait on the MRI until you have a confirmed date with Dr. Sclafani. It could be months depending on when you contacted the office and got your information to Holly. I called the first week in March, filled out the proper form immediately, and also talked to Holly. My husband has not received his testing date and Holly said it would not be in the next few months. She also said that there are many many people on the waiting list. I was also told that they do not want patients to fly home after the procedure. But, you should ask for yourself since this may have changed.

MaggieMae wrote: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.

I would wait on the MRI until you have a confirmed date with Dr. Sclafani. It could be months depending on when you contacted the office and got your information to Holly. I called the first week in March, filled out the proper form immediately, and also talked to Holly. My husband has not received his testing date and Holly said it would not be in the next few months. She also said that there are many many people on the waiting list. I was also told that they do not want patients to fly home after the procedure. But, you should ask for yourself since this may have changed.

I just talked to Holly yesterday. She stated that the list at this point is over a year, but that could change. I can not remember how she put it but it sounds like they might be trying to add more staff.

EnjoyingTheRide wrote:Cece, where did you get this? Lot's of people have/do fly while they are taking anticoagulants.

Perhaps it's an abundance of caution? It was the recommendation through Holly from Dr. Sclafani's office.

Thank you so very much for all your help. I'll just postpone the MRI's until I learn if/when I can see Dr. S since Medicare doesn't allow these taken too often.

I'm still excited about all of this and hope everyone's MS nightmares lessen soon.

jingerlove wrote:I'm still excited about all of this and hope everyone's MS nightmares lessen soon.

And yours as well. OT perhaps but Donnchadh just posted that her IR in chicago may be expanding and taking on more m.s. patients...maybe something to check out there?

Thank you for the info CeCe. I'll look into it but I think I'll trust Dr. Sclafani more than anyone at this point. I'm sooooo very impressed with him!

I was diagnosed with MS when I was 21, back in November 1990 so I've been living with this nearly half my life (I'll be 41 in a few weeks). I truly never held any sort of hope of feeling better in any way at all until I read about CCSVI and now Dr. S actually RESPONDS to people here. Wow... what a man is all I can say.

My wife has multiple sclerosis for 16 years. Because of the article of Dr Zamboni she has sought contact with a vascular surgeon who could find out if she had significant obstacles in the jugular and azygous system.

On February 23, 2010 she was treated with phlebographie of the Vv. Jugulares internae and the V. azygos

The result was that they discovered a rather long complete blockage of the V. Jugularis left. They could not open this vein and did not come through. Couls not balloon it. We now know there is a serious blockage but do not yet have a solution. It did not come as a surprise, because my wife has already a long time pain on her left neck side, which is becoming worse every month.

My wife is a little bit desperate, knowing where the problem is and not having a solution. We could not find anything about treatment of a complete blocked Jugular vein.

I hope you don’t mind that we contact you, because you do have a lot of knowledge what is going on. I wonder if you have heard before that a balloon or stent could not be used because the vein was completely blocked. If you have heard about a treatment to solve this, I hope you can inform me about this possible treatment.

Dr. Sclafani ...


Simple question ... but one we're not sure what to do - or how to do it.

We are coming to see you in June (date is booked ... THANK YOU ... you actually emailed back and forth with me a few times a few months ago) ...

I was wondering if we should find a local Interventional Radiologist OR a Vascular Surgeon before we come to see you, as a follow-up doctor back home (we're only 4-6 hours away but think it may be helpful to have someone local and really get someone local involved with Zamboni's and now your work).

If you think that's a good idea ... which would you recommend? An IR or a VS?

Also would you recommend meeting them before we come see you and explain what's going on ... or wait until after when we could have your notes and things available too?

Thanks so much for your efforts and educating us all.

Dearest Dr. Sclafani,

CT-V Scan vs. MRV

Could you please explain the difference between the two methods of scanning and comment on the likelihood of finding the CCSVI blockages with a CT-V Scan?

Thank you.

EnjoyingTheRide wrote:
Cece, where did you get this? Lot's of people have/do fly while they are taking anticoagulants.


Perhaps it's an abundance of caution? It was the recommendation through Holly from Dr. Sclafani's office.

There is a lot of misgiving and misunderstanding going around about anticoagulation as a component of the LBERATION. Not surprising for several reasons. At the current time, there does not (by hearsay) appear to be consensus, explanation, or data about the need or lack of need of anticoagulation or antiplatelet therapy after this procedure.

There is also some misgiving in the community about the risk of anticoagulation and the risk of flying on anticoagulation. This likely originates with the highly publicized intracranial hemorrhage that resulted in the death of one patient in the United States. I have heard some really detailed misunderstandings about that one. While I am not privy to the actual facts, some of the statements would put a shudder through the pharaceutical industry.

Let me clarify, there is no contraindication to flying soley based upon the use of anticoagulation. I queried several hematologists after these questions arose to be sure I was not in error and all agreed that anticoagulation is no less safe on a plane than on a merry go round., perhaps the airplane is safer if you are not adept getting off a merry go round.

Of course there are risks of anticoagulation and they include hemorrhage that does not stop.So if the plane goes down, and crashes dollars to donuts you are going to bleed more than the patient sitting next to you who was not on anticoagulation. So if the plane crashes you are going to die about a second before everyone else......first to heaven?

So despite rumors to the contrary, I do not recommend driving back to the west coast after procedures in new york, I think it is actually better to fly than to drive. If you have a difficult time ambulating in a plane, then it is no doubt safer to be on anticoagulation than not.

I have to get to work now. I will write more about anticoagulation after i take care of business at the hospital.

CT-V Scan vs. MRV

Could you please explain the difference between the two methods of scanning and comment on the likelihood of finding the CCSVI blockages with a CT-V Scan?

A CTV is a CT scan of the neck using iodinated contrast media
a MR V is an MR Scan of the neck that uses gadolinium based contrast media.

Both contrast agents use have very good safety profiles.

Both tests inject the contrast media in a peripheral vein and then image the neck after the contrast goes from the peripheral vein, back to the heart, through the lungs, out the heart into the aorta and its arterial branches that supply flood to the brain, then into the veins leaving the brain and goes down into the jugular veins.

As you can imagine, the contrast media is diluted during this long travel by mixing with blood without contrast media coming from the rest of the body back into the heart.

The fact that we can see any of this diluated contrast media in the jugular veins is a testimony to the technology which improves contrast resolution electronically.

These studies collect the imaging data is minute packets called voxels. they are geometirically cubic in shape. These cubes of data can be stacked in any way you can think of and that data is then displayed as cross sectional images, or can be reformatted into longitucinal, horizontal or obliqued images of the same data. 3-D images are also possible.

Each test has its strengths and weaknesses. They are good at showing the wall of the blood vessel, the diameter and other anatomy.

When risk of catheter studies is high, or when prevelence of idsease is low, both are excellent methods of imaging veins.

However they are inferior to contrast venography for most vein studies.

Dr. Sclafani,


Thank you for that explanation. Could the CT-V be giving false negatives?

I'm wondering why a neuro would prefer to use CT V scans with MS patients as opposed to an MRV?

Rosanna

Simple question ... but one we're not sure what to do - or how to do it.

We are coming to see you in June (date is booked ... THANK YOU ... you actually emailed back and forth with me a few times a few months ago) ...
I was wondering if we should find a local Interventional Radiologist OR a Vascular Surgeon before we come to see you, as a follow-up doctor back home (we're only 4-6 hours away but think it may be helpful to have someone local and really get someone local involved with Zamboni's and now your work).
If you think that's a good idea ... which would you recommend? An IR or a VS?
Also would you recommend meeting them before we come see you and explain what's going on ... or wait until after when we could have your notes and things available too?

I will email you privately to discuss your personall issues.

However the question has relevance generically too.

Any patient who travels a distance from home to consult with and be treated by a specialist familiar with CCSVI should have a local physician who can manage many of the non-procedural issues related to MS and CCSVI.
It would be ideal if the local neurologist was sympathetic to ccsvi and could assess and followup with the CCSVI specialist regardless of where you live. Unfortunately about half of the patients in my registry do not want me to speak to their neurologist who they describe as unsympathetic or hostile to the idea of liberation.
As patients are often treated with either anticoagulation (heparin, lovenox, fondaparinux, Arixtra, etc) or antiplastelet (aspirin, plavix, progridogrel) after undergoing liberation, it is vital to have a local physiciaan who can monitor your doagulation blood tests during the time of anticoagulation. It is near impossible for a remote interventionalist to monitor such issues.

You do not need a local surgeon or interentional radiologist if you want to follow with your primary interventionalist. Understanding the demands of travel for followup, it is a good idea for each community to develop its own CCSVI specialists. I would suggest that local MSers try to develop centers of excellence rather than shotgun to any interventionalist.

I hope that patients I treat will follow with me. I will know them better, i will understand their narrowings, etc.

with regard to whether a surgeon or a radiologist?

The question is ambiguous and many factors come in to play. It is not the type of specialist, it could be an interventional radiologist, a vascular surgeon, a cardiologist, even a neurologist or a nephrologist. One should choose based upon reputation as an endovascular specialists. All IRs are, but not all vascular surgeons are or are experenced ones. cardiologists generally treat cardiac problems but they have recently moved into other vascular areas as the number of cardiologists exceeds the cardiac work available.

You should be asking why type of training, did the training include a small amount of endovascular training or did was the training primarily focused upon that. How many cases of ccsvi have they done, wheree did they learn. had they prior experience with endovascular interventions on other veins, how often do they use stents, their complication rate. their recurrence rate
Given the lack of experience by many, it is probably best to have only a few people focus on this at the beginning. For the community sake, they should be predominantly in academic centers so that they can train new specialists and grow our cause. The entrepreneurial interventionalist, doing this as a business is not where i think this should be going at this time.