This Is MS Multiple Sclerosis Knowledge & Support Community

1eye wrote:I was going to ask you: why do you not think reflux is a problem, and how do you think it is caused? I would think it is the source of instantaneous positive jugular pressure, which could overcome gravity enough to result in instantaneous back-flow strong enough to damage the BBB and cause all manner of trouble. If you look at the inflated brain-draining-vein pictures taken by Prof. Haacke, it looks like the veins have been inflated. Maybe the stenoses in the jugular are just strong spots in the vein walls, that didn't inflate?

let me clarify. I do think reflux is a problem. It is caused by having outflow obstructions that require that the blood travel back to the heart through different routes than it should.

It is not really a matter of pressure because the pressure isnt high at all to begin with and increases in pressure are very small.

your description of having "strong spots" in the vein walls is nice if you mean that they are areas of the vein wall that cannot distend because they are stiff. Most often, those spots are near the valves.

good job, i might have said it differently, but i think you understand the spots

coin wrote:Dear Dr. Scalfani, I know a similar question has been posted before, but I kind of have to do it myself:
My husband had his MRI on Monday and the radiologist did say that he basically has no experience with the venous system and the interpretation on the scans, which was fair and we knew that.
He never the less said, that there is abnormality in the vens in the area behind the ears, god I am not a doctor and do not know the correct term, he said that it could either be a stenosis or just a normal abnormality, since the venous system is clever is finding it ways around? And for the rest he did not see anything spectacular, unfortunately..
My question know, wrt liver venes threat, does such a thing like a normal abnormality exist from your point of view?

I my world I would say that a normal abnormality needs to be looked at as well as to differentiate if it is a stenosis or not??, what do you think?

And thanks for answering!!
best regards from Germany
ines

dear coin

poor you.

normal abnormality?
normal anomaly?
innominate vein means vein without name, but isnt its name innominate?

I feel for you trying to make sense of things that take doctors four to six years of training 12 hours a day to realize that they know very little.

I cannot tell you exactly what your doctor said, or meant .

so lets try to understand these terms as they relate to a doctor

normal....occurs in people without disease. however there is not one normal appearance . there are variants of subtle differences because no one has a copyright on how the body is normally put together

anomaly....this is a developmental difference that is not necessarily diseased, although it can be. A sixth finger would be an anomaly. it might not be a problem, if it didnt get stuck trying to get in your pocket

abnormality...not correct....generally not good. a stenosis is an abnormality.

so what to do when your doctor says he doesnt know what he is looking at? .....BELIEVE HIM and admire him for his honesty, then get another opinion.

Dr. Scalfani,

What is the rate of re-stenosis in the patients you have treated? What has been the time interval between the procedure and the return of stenosis?

When would you consider using stents on patients who have re-stenosis?

Thanks!

Donnchadh

coin wrote:indeed it did sound strange but he was really pointing out that he is not an expert;-)) I guess my husband has anway to go for the invase procedure and doppler to have an almost chrystal clear result:-))

yes and no.

since you have gone to one doctor with little experience, please try to find one who has good experience with the venogram. otherwise you might get another report of "normal" anomaly, or normal abnormality.


A patient recently sent me catheter venogram that was reported as a normal right jugular vein and a blocked left jugular vein. The doctor ( I dont know whether he was a surgeon, radiologist, neurologist or PhD) tried to advance the catheter through the closed left jugular to no avail.

The images were not too bad but did not show the most central part of the veins near the confluens with the subclavian vein. However they clearly showed that there was a stenosis at the central part of the right jugular vein with collateral veins. The left "jugular vein" wasnt the jugular vein. it was a vertebral vein in my opinion and the left jugular vein was never seen.

So, while i do not want to rain on everyone's parade, there is going to be a thing called quality. Not all venograms are going to be good in everyone's hands.

We need to get some clarity, some experiences in centers of excellence, and some training and testing, perhaps even some certifying.

Imagine that: ONLY GO TO CENTERS THAT ARE CERTIFIED.......
Hell, we cannot even get up and going yet

bretzke wrote:

drsclafani wrote: geekgirl

i think that the diagnosis of ccsvi is difficult. none are expert at this since we are still in the phase of discovery. I would not trust one study. i would not trust anything short of catheter venography with ivus

Dr. S-

You have discovered 100% of your MS patients have CCSVI. Medical experts agree that catheter venography is the gold standard for ccsvi diagnosis.

Why is everyone trying to diagnose ccsvi using inferior techniques?

There is screening and there is definitive testing.
The general rule is to try something noninvasive first, especially when the association is not clear.
Also screening should allow more patients to be tested faster

I happen to agree that venography is the standard and that until it is proven that ultrasound is as good as venography, no patient should be denied venography.

But i am an iconoclast, the lunatic fringe from brooklyn, what do i know?

cheerleader wrote:Hey Dr. S--
would love your insight into the topic of IJVs, collagen and possible connective tissue disorders- in regards to what you've seen in MS veins. Check the topic link below out when you have a chance.
thanks for all you are doing!
cheer

http://www.thisisms.com/ftopict-11311.html

cheer
i have heard the same things. it all is very interesting in putting together the puzzle. it really does not sound like scar tissue, but rather developmental problems to me. but again, as Wilhelm Roentgen said: "I did not think; i investigated."

I anxiously await further analysis of the tissue samples to get a better understanding of this. In the meantime, all i want to do is get my plumbing job back!

bluesky63 wrote:Would this be an area where a rheumatologist would be a good resource? The whole connective tissue thing?

i am thinking anatomist, geneticist, pathologist, electron microscopist.


but the more the merrier

Salvatore24 wrote:How are you doing Dr. S?

In the last 3 weeks I have felt my neck veins pulsing/throbbing quite strongly, even while looking in the mirror you can see them throbbing. It is much less this week. What is the relevance of this? Coincidently a couple of weeks ago I was close to a relapse as well.

hard to tell from the description. could this be phlebitis, resulting from reflux?
An ultrasound might help understand this

drop by tomorrow :ill take a look

In researching for a question, I put together a list of the good doctor's responses so that I could more easily reference them. I thought it would be of great help to others to share. Hope this helps someone! (Most responses are referenced)

almost clever.....you are too clever!

great.....now i am referenced. i wonder what legal will think of this

please dont quote me, chapter and verse!

i am just a simple plumber

Kirtap wrote:Thanks for the answers.

If you or a member of your family had the ms, would you recommend the surgery as soon as possible?

yes

With stent or no stent?

without

Another question, do you know if the ccsvi could be the cause of tinnitus? have you heard about patient who had tinnitus and it was related to ms and/or ccsvi?

Thank you

yes ccsvi could be the cause of the tinnitus, so could it be a symptom of MS
tinnitus is often heard when the dye is injected into the catheter. it is related to turbulent flow near the middle ear.

frodo wrote:

drsclafani wrote:

frodo wrote:Dear Doctor,

I have been reading the article of Dr. Zamboni in which he describes CCSVI and how to perform the five Doppler test. Nevertheless he does not give too much information about the expected reflux, like the minimum volume and time of the reflux to consider a positive in the test.

Is there any source where this parameters can be consulted?

Dr Zamboni defined pathological reflux as more than 0.88 seconds in his paper
in the journal of neurology neurosurgery psychiatry in 2009. vol 80, pages 392-399.

Yes. I know that data, but out of 5 different test, Zamboni defined the pathological volume (>0.88) in the first test, and the pathological time for the second (>0.5 seconds), but he didn't give the whole specifications for the two first tests.

Is there any other source for these values?

The test 3 is quite clear. He gives a minimum section for the jugular, but again, for tests 4 and 5 (no flow and reverted control) are again at least obscure. No flow means exactly 0.0? reverted control is any negative value with no threshold?

i think that you have to go with dr 's latest opinion.
I can understand your desire for more clarity but things will change from time to time because of more refined techniques, equipment, experience, and data.

irishmum wrote:Hi Dr Sclafani

Thanks for all the time you give us!

My question is and you may have covered this before - but it is a real anxiety I have about the treatment - Is it possible for the valves to be damaged during the procedure thus making the situation worse as one poster on this site reports. I think his vein was found on initial examination to be wider than normal.

My brother when treated for blood cloths was found to have an abnormal venous system in his abdominal cavity and sticky blood syndrome so Im hopeful that Dr Simka will find something to explain my ms.

Thanks and regards

Maureen

apparently one patient writes about it. It hasnt come up as a common problem, so one must wonder whether ricci has a confounding variable that make his situation so much different.

some of my colleagues have questioned the developmental malformatoin issue and suggest that this is all a hypercoagulable state that leads to narrowed veins. I do not think so......but please do be tested for it before undergoing any treatment

Zeureka wrote:

Once a stent "adheres", how permanent is the "glue"?

Thanks again!!!

Dr Sclafani: the stent sticks by being incorporated into the wall of the vein. How does it do it? the endothelial cells (the lining cells of a blood vessel) creep over the stent slowly but surely. Once covered by the endothelium, the stent is basically incorporated into the wall of the vein. Safe bet 2-4 weeks.

Dr Sclafani, would I understand correct from this that the potential "danger" of stent migration to the heart (as happened in this 1 case in Stanford repeatidly mentioned in the media) can be considered over by 4 weeks?

In case of a stent implant, could it be important not to perform any physical activity (i.e. even lighter sports) until the stent is covered by the endothelial cells and fully incorporated?

zeureka,
as you know by now, veins for the most part are highly compliant, meaning that they can distend greatly to accomodate blood flow. Exercise which would increase cardiac output and cerebral blood flow would surely distend the normal vein. Distension of the area where the stent is, could be a problem if the distension exceeding the diameter of the stent

personally i would sit around and eat bon bons for a couple of weeks

Flashover81 wrote:Hi Dr. I have a 14 year old son recently diagnosed with ADEM. But the Neuro said his MRI might point to MS. He was on high dose steroids for 5 days. His presenting symptoms were balance problems and nystagmus on the left side. Since the steroids he has made a full recovery. We are waiting a month to do a 2nd MRI I was wondering if children have ever been diagnosed with CCSVI and if any have ever had the treatment? I am just doing as much research in case it turns out to be MS.
Thank you for your time....

i havent noticed it.
hey, salvatore24....got that reference for us?

copacabana wrote:Hi Dr...i do have a question to ask now...since i have been type 1 diabetic since i was 10yrs. old and it does not run in the family, either does m.s., i was the first one in my family to get these wonderful problems LOL...i wonder if the ccsvi had anything to do with this...kinda like what came first the chicken or the egg LOL

copacabana.....way over my humble head....