DrSclafani answers some questions

[drsclafani]

Doctor:

Is there any disease/symptoms that could make a vascular specialist to request a "complete" (head to toe) venous CT scan/venography/whatever with dynamics?

CCSVI and MS might be a small portion of a bigger general problem?

Thank you for your continuous help

Algis, for the life of me, i cannot understand why one would do that. I am not even sure it could be done

you might have to lie in the scanner all day.

[Cece]

That was a pretty short dinner! Must've skipped dessert.

[drsclafani]

My friend Dr. Bob says stents should be on the outside of the veins, and the balloons push the vein out to where it would maybe get glued (velcro'd?) to the external stent's inside wall. Why not a plastic tube like my brother's shunt?

your brothers shunt was not for improving blood flow but to drain intracranial fluid, i would guess. The purpose of the stent in ccsvi is to prevent recollapase or restenosis of the abnormally narrowed jugular veins

I don't think you're going to get everyone onto a trial. Some of us have had bad experiences on trials. Playing placebo in the scientific superstition pageant. What price stats?

and how do you ever get a nontreatment arm when you have to do a procedure. Its not like you can have a sugar coated balloon catheter.

there are many types of trials. Randomized prospective double blind multicenter trial would be the best but very difficult to design, get through an IRB very hard to fund.. Of course, mostly we have safety trials at this point. these pilot studies assess reproducibility and safety. A registry may be helpful but not as accurate. of course a metaanalysis would be useful but there arent enough reports around to do a metaanalysis.

[drsclafani]

I don't think you're going to get everyone onto a trial. Some of us have had bad experiences on trials. Playing placebo in the scientific superstition pageant. What price stats?

Sadly the people who get in a randomized trial and draw the unfortunate placebo group will be in no worse of a position than the rest of us who are currently playing the waiting game, assuming that at the end of the trial the people in the placebo group are offered the treatment as part of compassionate care. Also assuming that the trial is of limited length.

If it were a two-year trial, I'd feel very differently; that becomes tantamount to with-holding effective treatment and I'd start calling tuskegee syphilis on them.

it will be difficult to do less than a two year study to come up with real answers that will satisfy many physicians working with patients with MS.

and what if the long term outcome is that liberation is harmful. patients in the notreatment arm might be better off.

the problem with a blinded study is how does one keep a patient in the dark about whether they are treated or not. Do we do all procedures under general anesthesia to remove the astute MSer from the equation? Unethical and dangerous). Very difficult. it will take a lot of idiscussion

[drsclafani]

Hello Dr Sclafani

I had mine catheter venography which showed no obstructions in jagular and azygous veins. Before venography i had Dopplar scan which showed reduced flow in my vertebral veins. I know from previous posts that venous plexus has a quite a different system but in your experience is it possible that stenosis in venous plexus could create as big problems as jagular and azygous?

Thank you

i am sure many people who read this thread will know my thoughts.......missed abnormality. I am sure 100% normal happens but doubtful.

i have so many jmrv and venograms sent to me that i havent gotten through. otherwise i would ask to see yours.

[drsclafani]

Dr. Sclafani,
Thank you for answering my questions. Thanks to you I was able to convince my IR to go straight for the venography, which we are in the process of scheduling.

I have a general question about the route the catheter takes when probing the jugular and azygos veins. I know the insertion point is in the groin but where does it go from there?

The catheter goes in the right femoral vein, up through the external iliac vein into the inferior vena cava (IVC), past the branches to the kidney and the liver, and then into the right atrium of the heart, out of the atrium into the superior vena cava (SVC). At the top of the SVC is the azygous vein, then further up are the right and the left inominate veins both of which divide into subclavian vein and internal jugular vein at the
[/quote]

its not that complicated actually. just seems like it

Also, could you elaborate on this IVUS you spoke of as an imaging technique? Is this a common tool of vascular surgeons? [/quote}


IVUS stands for intravascular ultrasound. this is a probe that is placed inside the blood vessel. Sound is bounced off the wall and captures on the echo. it is great for studying the diameter of the blood vessel, looking at the valve structures and finding other abnormalities.

IVUS is most used by invasive cardiologists. Jugular venography is mostly done by interventional radiologists. There are some vascular surgeons who study these veins but not that many

I know we are in a time of discovery and I believe your work will help pave the way for future IR's to give the best possible treatment for their MS patients. Being a plumber does not exclude you from being a hero to many. Thanks again, doc!

Andrew

[drsclafani]

Dear doctor Sclafani:

I have had the procedure on Monday (i am in Sofia and dr Petrov from Grozdinski's team operated on me). They seem to know what they are doing but who am i to tell.
Anyway, i have to say nothing has changed so far except from a very strange feeling of shoulder muscle relaxing of some kind. One question would be if you know of any patient to show ANY kind of improvement after days or weeks (or even months haha) instead of right after the procedure
When i will be cured doc????

i wish i could answer that question!
some people describe, as you know, slow steady imrovement. others fee spectacular right away, and others have no change at all.

I do not know why. perhaps it is the extent of the permanent insult that has already taken place

Ok,the real question for you is the following:

I have had two doppler tests. One in Greece and one here by Grozdinski. They both showed critical absence of flow in both my jugs for some strange reason. Strange i say cause once Petrov went inside the problem in my jugular was like 30% stenosis in my right and somewhat more than moderate stenosis in 2 places (high and low) in my left. I dont have my epicrisis translated yet but thats what i was told during the op. They ballooned all over the left jug (i must say that the pain was worth to mention) and this went for my azy too cause it seems there was a problem found there also.

So, here goes: how come the doppler AFTER the operation showed that flow in both my jugs is now perfect??? i get it for my left one but they didnt do anything special in my right except for a balloon dilatation which i didnt even feel. Petrov told me this was normal cause he just did it to make sure but there was no real problem there to begin with.

This is not logical. The report from the after op doppler is 5 mms width for BOTH jugs while before it was 1mm. And the difference is obvious indeed even to me. Do you think i may experiencing some kind of Xfiles situation here?

.

they didnt do anything special except venoplasty my vein.....what is treatment. or are you satisfied with stenting. Going from a 1mm narrowing to 5 mm is pretty significant.. also a little bit of angioplasty could go a long way, if the valve simply had something that stuck them together. once unstuck they might be nonobstructive

my dear costumenastional...this is not a fair question, without seeing all the imaging, but fair is a meteorological or dermatological concept

[drsclafani]

drsclafani wrote:

I rely upon IVUS to assess valve movement and function as well as venography. Sometimes the venogram looks like stenosis but IVUS shows that it is a nonfunctional valve.

=> Dr Sclafani, thanks so much if you could explain to me some technical terms related to this:

- what "CT scans" are that you said you used to generally study the azygous in more detail => so you then know better during angiography in which angle to turn catheter to find pathologic valves in azygous/jugular? (Did I understand that correct?)

i am clearly creating some confusion. Let me clarify

1. i do not use CT angiograms in patients with MS with few exceptions
2. my visiting professor, Dr Wang Xiaodong of the Beijing Cancer Institute is looking at anonymous CTangiograms that were performed for other reasons (like to look for blood clots to the lung). We are looking at the azygous vein on the CT to see what the most common anatomies of the azygous arch exist and to see what is the typical diameter of the vein. How we angle the xray tube to take picture s of the azygous arch will depend upon the way the azygous vein travels. We want to take the picture of the vein perpendicular to the long axis of the azygous arch

sorry to confuse. i am not sure i am doing a better job now!

- and also what "IVUS" is?

intravascular ultrasound. an ultrasound of the inside of the vein

- and if you say "venogram" and "venography" you mean the MRV ? I thought venography was identical to angiography (with catheter)....sorry...I get a bit confused now...

Venogram means images of the veins. usually with contrast media.

we distinguish
CT venogram, MR venogram from
catheter venography

[drsclafani]

I have a general question about the route the catheter takes when probing the jugular and azygos veins. I know the insertion point is in the groin but where does it go from there?

One of my first questions, over in the thread for patients of Dr. Mehta, was along these lines...basically "How do they avoid going through the heart?" and his answer was that they do go through the heart but the catheter is small enough that it's not an issue. So I'm okay with that now.

- and also what "IVUS" is?

IVUS is intravascular ultrasound, a tiny ultrasound camera on the tip of a catheter, so he can get images of the veins from inside of them.

cece
go to the head of the class!

[bestadmom]

Dr. Sclafani,

Speaking of going to the head of the class, what ever happened to that test you were going to give us? Larmo is waiting. I'm waiting.

Isn't it the end of the semester yet?

Best

[drsclafani]

It is difficult to not do followup on patient i have already treated and to take care of the patients who were about to be treated when i got shot dow

I can't even imagine how frustrating that must be.

I was bummed yesterday too, it was my originally scheduled day for the procedure, but it was also my birthday so there was cake and family and all the good stuff.

The delay isn't so bad, it's the not knowing if the IRB will approve at the end of the delay. So I need not an ask-Dr-Sclafani thread, but an ask-the-magic-ball thread: will the IRB approve? And when?

so my friends, i will share with you the process as it has evolved so far.
1. I wrote up the proposal
2. i shared it with some colleagues who participate in IRBs to see what they thought
3. they made some recommendations
4. I revised my application, my protocol and my consent form. consent forms are very complicated for a wordsmith like me. I must dumb this down to a fifth grade education
5. Dr. Valsamis, my coinvestigator then reviewed all three documents
6. i mad corrections, addiitons , clarifications,etc
7. irb submitted.
8. tomorrow or monday i could hear the first review.
9 revise and send back

i am confident that the IRB will approved this research project; however i cannot predict how long it will take

and cece.....happy birthday

[drsclafani]

Hey, Doc - we also appreciate you sharing your feelings of anger, frustration, impatience, etc. You have given us hope and we sometimes forget what you're going through on behalf of US! I believe wholeheartedly that we feel best about ourselves when we help others - please be assured that you are still helping us - maybe not in the way you prefer but it's still invaluable. We've come to know you as an outstanding Dr...now you're telling us you're a NYC cop, too?!? Do you also wear a shirt with a big S on it?

of course i wear a shirt with a big S on it.........my name really is sclafani

[drsclafani]

That was a pretty short dinner! Must've skipped dessert.

how did you know that. were you lurking in the dining hall. it was a nice annual dinner. Commissioner Kelly, a most amazing man, talked a bit about how medicine and policing had much in common. high tech, need to pay attention to detail, remembering the rare . there was also much congratulations going on related to the rapid detection and capture of a key suspect it is an honor to serve these courageous men and women

[drsclafani]

Dr. Sclafani,

Speaking of going to the head of the class, what ever happened to that test you were going to give us? Larmo is waiting. I'm waiting.

Isn't it the end of the semester yet?

Best

waiting for IRB approval of the test.....

[North52]

Dr. Sclafani,

If I was an interventional radiologist without any experience in CCSVI,interested to start performing balloon angioplasty, what would be the most important pieces of advice you would give me?

What would be typical mistakes and perhaps harmful mistakes I could make and how can I best avoid making them?

Thanks,

North