DrSclafani answers some questions

[sbr487]

Dr. S,

There are some thoughts that stenosis sometimes is not an issue and can very well be compensated by collaterals etc. So, do you think the main determining factor could be reflux rather than just stenosis?

[Cece]

Last time DrS was away, someone emailed me about a question that he'd missed and that she chose not to ask again. Which made me a bit sad. And he's made statements recently like this:

so many posts i sometimes cant remember if i already responded.

So here is what I'm doing, it's the best I could come up with: I'm adding each question to a word file as they come in so they can be reposted after Dr. Sclafani's trip to the woods.
Like this:

QUESTION FIVE

Good day Dr S,

I hope your are having a wonderful time in the woods.

I was angioplastied by Simka’s team last March. I felt great for 4 months. But recently, some symptoms have reappeared: although not as bad as before the angioplasty of my two jugs and stent placement in my azygos. It felt soooooo good that I want that back. I suspect intimal hyperplasia in my stent after reading your posts. I am presently working hard locally (Montreal) to find and convince a doc who is willing to see me as a person with a vascular problem-now that I was stented and angioplastied-and look at my veins but it is not a piece of cake. Vascular doctors up here were told not to touch us (MSers) but of course they can angioplasty people whom are hemodialysed and develop blocked jugs.

I’m concerned about total blockage of my azygos with time; if of course my problem lies there. I guess total blockage of a major vein is not a good thing. Is this scenario possible ? Do I have time to try to convince someone here or is it kind of urgent that I should be taken care of ? Should I run to the emergency of my hospital before necrosis? Go ahead scare me....

Thank you for everything you are doing for us. You are the angel I am trying to find up here. Hopefully they made a few more after you and there is one in my area!

QUESTION SIX

Dr. S,

There are some thoughts that stenosis sometimes is not an issue and can very well be compensated by collaterals etc. So, do you think the main determining factor could be reflux rather than just stenosis?

[1eye]

Dr. S, regarding Zamboni's very specialized sonogram protocols:

Since the abnormalities being found are far from subtle (malformed valves, anomalous membranes, mysterious septums, muscle bundles [good grief!] etc.) and the backflow of blood through the veins also being apparently quite out of the ordinary, shouldn't more generic procedures be able to detect these physical oddities?

Why does it take operators with highly specialized training using only very specific techniques to pick up signs of what amounts to gross venous dysfunction?

The knock against the recent German and Swedish studies that didn't find signs of venous reflux was that they weren't using the precise Zamboni protocols. Doesn't the fact that such precise protocols need to be followed throw up some question marks about the hypothesis?

This kind of reminds me of the MS researchers at Vanderbilt University who repeatedly (up until this day) find signs of chlamydia pneumonia in the serum and CSF of MS patients, when no other researchers or labs can replicate their claims.

Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?

They are quite out of the ordinary (these venous malformations), but they eluded detection for 150 years, so it is no surprise they were not straightforward to find. Doppler ultrasound is a screening tool, and one that may end up with its own specialized set of procedures for CCSVI testing. There is nothing arcane about it, rather it requires experience, since these malformations come in so many flavours.

They were not using the "Zamboni protocols", and limited themselves to screening only. If you decide you do not intend to treat CCSVI with venoplasty, firstly, you will never see the result of your screening 'live' on a fluoroscope screen, and secondly you will indeed find some false negative results, because of the azygous vein, operator error, etc.

That is why catheter venography is considered the gold standard. Until you do that I would not eliminate CCSVI, or May-Thurner's, or Budd-Chiari. Taking a course from Dr. Zamboni does not provide you with anything magical, mystical, or other-worldly. It provides you Dr. Zamboni's experiences with a very complex set of semi-random congenital malformations. There is nothing secret about it.

In fact I think the less uncommon this knowledge is, the easier and less expensive these procedures will be, and the better off everybody involved will be. The only question marks in these results are the conclusions. The denizens of this forum know, for instance, that the valsalva maneuver will invalidate your results. They know this not because of magickal initiation but because they have read public peer-reviewed documents.

Other researchers or labs can in a very straightforward manner replicate Dr. Zamboni's claims. They are doing this every day around the world. Just not in experiments looking to discredit. If you use a different recipe, the cake tastes different (sometimes more like a hotdog).

There have not been any generic procedures developed, partly because of FUD from what I call neigh-sayers. But they are in large part very generic. My local heart hospital does angioplasty almost on a production-line basis. Veins are different, I know, but not that different, and the procedures are done regularly elsewhere in the body.

The only thing specialized and hard to reproduce is the screening DUS. I would take whatever courses were offered, and buy the machine from the Italians, because they have been at this a while. Yes it is probably outside normal equipment and abilities, but big deal. Do we know everything there is to know about the human body, so Zamboni can teach us nothing? I think he and a lot of others, have results that say otherwise.

[JohnJoseph]

Good summary, 1eye.
I wish you and your doc good luck !

[newlywed4ever]

Cece - great idea with the Word listing of ??s.

Dr S - Your parting post once again made me want to swoon (but wait! I just realized that I can CHOOSE when to swoon! Pre-angio, I always looked like I was swooning!) But enough of chatter.
My question: Dr S in Albany commented that he thought he had seen the worst May-Thurner until ME; however, my body had compensated so well that he felt that it was best to leave alone. Is this something that might aid you in some way (atlas?). And, since I've developed this new-found obsession with veins, is this something I should seek a 2nd opinion on? (I have the cd and am awaiting written report).

[Cece]

Cece - great idea with the Word listing of ??s.

Yours is now QUESTION SEVEN on the list.

Ever wonder how many questions he gets in a week? I am suddenly curious.

cece you will be talking to yourself after i answer the last question i can. i will not be reachable except by a bear ,i guess) for the next week

I had been picturing panda bears, now I will picture grizzlies.

[adamt]

Hi Dr Sclafani,

You kindly looked at my catheter venogram images last month and said i had IJV stenosis, May Thurner, poorly developed lumbar veins and Possible azygos stenosis.
well last week i was liberated in Poland,

I asked the surgeon to enter via the left but she said no, only the right side,
So i got both my IJVs ballooned as they enter the chest, where the collar bone is - you said yourself the IJVs were narrowed as they entered the chest
She said my azygos was normal and blood flowed correctly through it

But now i need to get the May Thurners treated

I will have to join the waiting list to be treated on the NHS,
But i have noticed 1-2 days after the procedure onwards, my left thigh is more tender/stinging more than before IJVs dilation

i can only guess thsis is because as the IJVs are now dilated, more blood is coming down to the illiac veins, and the left one is becoming more blocked?

Would it be wise to get the left illiac ballooned/stented as soon as possible?
or should i wait for longer - as i only had the IJVs liberation 7 days ago

thank you very much Doctor

Adam

[Hopeful10]

Dr. S,

I hope you're having a wonderful time in the Adirondacks!

When you get back and have a chance to answer, here are my questions for you (and thank you again for taking so much time to educate and reassure us):

1. Professor Zamboni found almost no restenosis in the azygous veins of the CCSVI patients his group treated (according to the paper published approximately 1 year ago). Based on your experience and discussions with other doctors (or patients of other doctors), are you finding this typical? In other words, if a doctor who is experienced in treating CCSVI performs PTA on a patient's azygous veins, would it be fair for the patient to think that there is a very good chance that his azygous would stay patent for 6 months, 1 year, 18 months, or even longer?

2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?

3. Based on your experience and discussions with other doctors (or patients of other doctors), are you finding that fixing flaps, membranes, or valves in the internal jugular has better, worse, or similar success rates (in terms of patency at 3 months, 6 months, 1 year, etc.) to fixing other problems with the internal jugulars? Obviously the only published research is Professor Zamboni's and he didn't publish statistics by type of internal jugular problem. I'm just trying to set appropriate expectations if in fact I have a flap or membrane or valve problem in my internal jugulars -- should I expect that patency at 6 months after PTA will be approximately 50% for these issues, just as Prof. Zamboni reported was the case with internal jugular problems as a whole?

[frodo]

ccsvi is a term coined by dr zamboni

chronic meaning occuring repeatedly over a long time
cerebrospinal venous pertaining to the brain and spine
venous insufficiency meaning that the venous outflow is insufficient for the needs of drainage.

he detects that by ultrasound which shows reflux up into the veins that should be draining down toward the heart


it is a diagnosis made by US. its consequences in the brain are a hypothesis. several patterns of insufficiency have been defined. how they reflect neurological effects is not yet clarified

But, please, Dr. Sclafani, how would you define CCSVI? Maybe as the presence of reflux into the brain and spine? I mean, if somebody with yugular stenosis but not reflux is checked by you, Would you diagnosize CCSVI or just stenosis? and what would you do in the opposite case (reflux without stenosis)?

[Irene]

I have taken pulse steroids due to a relapse two week prior to my scheduled angioplasty. Could this be a problem?

[HappyPoet]

An IR who performs two separate interventions, one for each jugular vein, was mentioned earlier in the thread. I just spoke to a spokesman for the privatescan clinic in Dusseldorf, it is Dr Beythian who does this (he works with Dr Kraus.) The rationale behind it is to avoid the unlikely event of both veins collapsing he said.

i still think this is nonesense. I have been told that dr mehta does the same thing.

L, Dr. Mehta's protocol allows him to test/treat patients now, while he awaits approval of his study. Coincidentally, my second IJV procedure with Dr. Mehta happens to be today... and tonight, I'll update my post (page eight) on the sticky Tracking thread.

cece you will be talking to yourself after i answer the last question i can. i will not be reachable except by a bear ,i guess) for the next week

I had been picturing panda bears, now I will picture grizzlies.

Cece, it's hard to believe, but you're actually wrong about something! ;)
The black bear is the only bear that calls the Adirondacks home -- the closest grizzly bear is in the Canadian Rockies.

~HP

[CureOrBust]

not that this is the same, but it may help you feel more comfortable before you get a chance to speak to your treating physician.

I had my venogram and some angioplasty today, actually about 6 hrs ago. One of the questions I asked the surgeon was "how long after this procedure could I take a pulse of steroids?" By steroids, I mean 75mg/day oral Prednisone for 3-5 dyas. He said Tomorrow.

[Cece]

I had been picturing panda bears, now I will picture grizzlies.

Cece, it's hard to believe, but you're actually wrong about something! ;)
The black bear is the only bear that calls the Adirondacks home -- the closest grizzly bear is in the Canadian Rockies.

This is a great thread for learning things.

Hope your procedure goes wonderfully, I'll be waiting for the report back.

[Drury]

HappyPoet,

Hope all went well.

Best,

Drury

[Drury]

Irene,

You must mention the steroids to your doctor as Dr. Sclafani had said earlier that there could be a problem with clots. I am sure they will be able to resolve this with blood thinners.

Drury