This Is MS Multiple Sclerosis Knowledge & Support Community

Exactly!!!!!

AndrewKFletcher wrote:
Insanity is to keep doing the same thing over and over again and expecting to get different results. This also applies to the insanity of sleeping flat and expecting to wake up to health improvements.

Anyway, Dr. S. could you please outline the various forms of ccsvi testing/scanning/imaging and perhaps the ones you prefer to use.. I'm getting them all mixed up (imagine that?).

Any thoughts on not finding stenosis or valve problems and positive DX of MS (improper imaging, untrained tech, wrong protocals)? Have you seen %100 Zamboni criteria (malformed valves, stenosis etc.) in your experience?

THANKS

John

drsclafani wrote:
There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous

Dr. Sclafani, can you elaborate - do you mean pre-venogram imaging not picking up azygous problems, or the actual venogram not seeing the problem? If it's the second scenario, could this mean that a lot of venograms that have been done by others are not actually seeing azygous issues. This could be a biggie - perhaps this is why Zamboni has seen a lot more azygous blockages than Dake and others.

Hi Dr, thanks for letting us know how your progressing. I always love hearing about your discoveries, no doubt Dr Zamboni does too.
I watched this Youtube video from a guy who is trying to get treated after being tested and showing blockages. He has been told his blockages are not a problem, don't need treatment and it set me spinning and I would very much appreciate your point of view.
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The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
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This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.

Lyon wrote:Dr. Sclafani,
My Grandpa died in 1995 but years before that his Carotid arteries plugged and in those days they evidently removed blood vessels from your legs to replace the carotids.

He wore the scars on his neck with pride and the operation(s) seemed a huge success.

Vessel replacement in the neck has been done and possibly perfected long in the past although now they evidently just scrape out the carotids.

Questions:

Do you think replacing sections of veins with sections of (more rigid?) artery is possible/preferable to vein/vein replacement?

Interesting question. The reasons they use veins to bypass clogged arteries is because there are many veins but few arteries. Replacing a vein with an artery would deprive some area of the body of the artery that brings blood to that part of the body. That could lead to inadequate blood flow to those tissues.....called ischemia.

Also the jugular vein is quite larger. an artery that size would be my best friend and i would not want to hurt its feelilngs, if you know what i mean

Is vein replacement even possible? Sounds like they're pretty mushy.

veins are often used for bypass. However they anlarge to the flow through them. if flow or pressure are not adequate, there is a chance, sometimes a big one, that they will clot off.

I did a literature search on jugular vein replacements. could not find a one. There were some reports of repairs after injury, and after catheter placement injury, but these were not replacements. Replacements of the jugular bulb at the skull base has been reported during surgery to remove tumors but nothing like CCSVI. Maybe that is because no one ever really needed to do it. Perhaps we will need to be looking for some reports in the literature in the next few years.

Have procedures been improved to the point that replacement of a small piece of vein could be done via microsurgery or would it require something like the huge scars Grandpa was so proud of?

that would depend upon how much of the jugular vein needed to be repaired. Surgeons make incisions that allow them to do their work. they have no particular desire to be edward scissorhands

Zeureka wrote:

Cece wrote:Bear2, the azygous has been tricky for anyone outside of Zamboni to find stenoses there...it seems safe to assume your azygous wasn't imaged correctly, because no one has been imaging the azygous correctly.

And apart from the azygous, couldn't there be a stenosis in one of the other ascending venous paths that are not yet routinely checked (and research ongoing)...this might also explain little improvements of MS symptoms in case of RRMS if more spinal MS...?

There are many signs that point to azygous pathology. Valves, reflux, filling of the deep veins, kinks, webs, and so forth. The valve problems in azygous and jugular veins can be shall we say "enigmatic"?

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.

1eye wrote:Hello, Dr. Sclafani.

Question 1. Are there, besides the canonical five signs of CCSVI, any quantitative measures that I can look for in a doctor's report? I will probably not have the advantage of your personal percutaneous expertise but I am going for testing in a few days, so I am interested. Flow rates, pulsatility of reflux, percent of stenosis, you know the drill.

how about >50% narrowing,
negative delta,
reversal of flow for more than 0.5-0.88 seconds
assympetrical flow, pressure, etc

Question 2. I have seen many descriptions of expected improvements in what used to be called MS symptoms (I don't know why we are expecting any of those, since no link to MS has been *proven*, and we are only treating a vascular problem really), but I have not seen a description of the effect this procedure is supposed to have on our CCSVI. In numerical terms, and that whole 9 yards. You know what I mean? Just so I can sound quantitative when I talk about it.

o, lover of data,....THERE IS NO DATA. One compelling reason to go to a team that is doing a trial. Because in a trial, one of the functions of the IRB is to assure that there are appropriate measures built into the design. EXCUSE MY SELF SERVING PLUG. But seriously, the question does give justufication to the demand that things be done by trial. Otherwise we won't really get good answers

Those analyzing data kept on the recipients of this work had better collect a few numbers too, much as we would like to avoid it.

there you said the same thing as i did

Thanks again for all your assistance. Reminds me of a sign I once saw. In ancient times they used to have special 'call police' boxes with special phones in them in the UK. Someone had scratched out the letters 'AD', and the phone now just said "VICE AND ASSISTANCE OBTAINABLE IMMEDIATELY".

While it is true that i did offer to give discounts for purchase of my fantasy patented jugular stent to patients who slapped a big kiss on their lovers, I wouldnt call that vice, i would call that good advice

L wrote:I have mostly spinal lesions. Does the location of the lesion, Dr Sclafani, have any bearing, in your experience, on the location of the stenosis and also the prognosis/that benefit that people have received from treating CCSVI?

Thanks!

seems to me that the prognosis, as best we can tell with limited data, is related to the extent of the neurological damage existing at the time of treatment. But it is limited data

Other factors include the number of obstructions,
and azygous disease seems to have better resolution and less restenosis....

but limited data.

jr5646 wrote:Exactly!!!!!


Anyway, Dr. S. could you please outline the various forms of ccsvi testing/scanning/imaging and perhaps the ones you prefer to use.. I'm getting them all mixed up (imagine that?).

neck ultrasound with doppler hemodynamics shows abnormalities in flow that result from outflow obstructions and shows stenoses

MRVenogram shows narrowings of the jugular veins, can quantify flow, show collateral veins

CT venogram shows narrowing of the jugular veins.

catheter venogram minimally invasive test that shows narrowings, flow disturbance, abnormal valves, kinks, etc in both the jugular veins and the azygous veins. Is a precursor to treatment and is the Gold Standard test to show jugular outflow problems

IVUS endovascular ultrasound that shows the cimpliance of the wall, fixation of the valves, duplication of the veins, better than any other test for these problems

Any thoughts on not finding stenosis or valve problems and positive DX of MS (improper imaging, untrained tech, wrong protocals)? Have you seen %100 Zamboni criteria (malformed valves, stenosis etc.) in your experience?

THANKS

John

1. people see what they are prepared to see.
2. We are in an age of discovery
3. criteria have not been defined
4. relative value of multiple techniques have not been studied
5. training is not standarized

The more we learn, the more you will want standarization, quality review, good data.

Now we are all frustrated and want to rush, but fools rush in

tzootsi wrote:

drsclafani wrote:

Dr. Sclafani, can you elaborate - do you mean pre-venogram imaging not picking up azygous problems, or the actual venogram not seeing the problem? If it's the second scenario, could this mean that a lot of venograms that have been done by others are not actually seeing azygous issues. This could be a biggie - perhaps this is why Zamboni has seen a lot more azygous blockages than Dake and others.

i meant that abnormalities can be missed on venograms.

I surely didnt figure out initially how to look at it.

When I get out of jail, i am going to restudy my initial patients. I suspect I missed some abnormalities of their jugular veins

NZer1 wrote:***************************
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
***************************
This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.

If it is true that the outflow obstructions of the cerebrospinal blood flow is congenital and related to genetics, one can surmise that these problems are present at birth.

Since MS usually manifests around age 30, that means that it took thirty years to develop the associated symptom and sign complex called multiple sclerosis.

if one has both jugular veins removed, a rather extensive bilateral neck dissection, one can be sure that the situation is quite dire.

Survival for 30 years would be highly unlikely.

Therefore developing MS is unlikely in this situation.

Perhaps the vascular surgeon does not understand the nature of CCSVI and thinks that jugular veins are expendible.

we know better dont we

drsclafani wrote:

L wrote:I have mostly spinal lesions. Does the location of the lesion, Dr Sclafani, have any bearing, in your experience, on the location of the stenosis and also the prognosis/that benefit that people have received from treating CCSVI?

Thanks!

seems to me that the prognosis, as best we can tell with limited data, is related to the extent of the neurological damage existing at the time of treatment. But it is limited data
Other factors include the number of obstructions,
and azygous disease seems to have better resolution and less restenosis....
but limited data.

here are many signs that point to azygous pathology. Valves, reflux, filling of the deep veins, kinks, webs, and so forth. The valve problems in azygous and jugular veins can be shall we say "enigmatic"?

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.

L, welcome to the club! I had a few lines of exchange with Dr Schelling about this and according to him my jugular pathologic/malformed valve problem blocking blood flow could more likely relate to brain issues (and lets still say: fortunately don't have much there...), while the extensive spinal lesions more likely related to the azygous and lumbar/vena cava area...(and Dr Sclafani confirmed somehow the azygous story in a previous answer).
I do not know about my azygous yet....and unfortunately for the other venous passages that drain the spinal cord still more research needed to get to a satisfactory protocol, at least this what understood from Schelling on Haacke's progress so far...but they may discuss further progress on this now.

As regards the valve issue, would be interested Dr Sclafani if in case of several CCSVI issues found in a patient in different places (eg two or three), were these always of the same type? For example, all with problems of pathologic valves or all due to stenosis of the wall... I have only been wondering since CCSVI is congenital then maybe one has maybe genetically the same type of pathology in several veins in the body?

And an additional question: if in the azygous those valve issues are often not detected or underestimated...hmmm...with a friend of mine that also has extensive spinal cord issues no stenosis in the azygous was found, but he got angioplasty of his left internal jugular, where a larger stenosis was found.

(I still wonder that it is indeed "enigmatic" not to detect these valve problematics in the azygous after MRV and then the catether venography at the moment of percutaneous venoplasty itself?! Are they easier to detect in the jugulars since there the doppler exam reveals them? So in the MRV you would not see a malformed valve in the jugular that you saw in the doppler exam? And what could be done to improve techniques to find these valve pathologies in the azygous?)

My friend had some improvements with sight (black curtains gone) and more energy/less fatigue...but as regards the potential preventative effect that might relate to CCSVI and then the prevention of further spinal myelin damage we are now wondering...if the azygous really not affected, maybe one of these other venous passages ?? Guess for the moment only god knows...

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

Well, in the past I thought I had come from an auto-immune family: father had diabetes, mother had vasculitis, sister has lupus, brother has vitaligo, other sister has arthritis, other brother (well, we've all gotta have something) has CLL. And the healthy (??) brother had a jugular shunt put in when he was weeks old, back when it was brand new, for hydrocephalus. You know,unproven surgery? I am beginning to think we all had/have some version of CCSVI!

I believe his jugular shunt was plastic. 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?

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?

Since 25% of normals and 50-100% of us have this problem, could it be that the apparent increase in MS is not due to invention of MRI but above-ground fallout?

OK enough babbling. Sorry. There might have been questions there somewhere. Fuggeddaboudit.

i am skeptical about bifurcation narrowings. the lesion is often lower and the narrowing above may be physiological.
what is your classification. PPMS may not respond in the same way as RRMS[/quote]

I am SPMS and have lesions on spine and brain. The spine ones seem to be causing most physical problems: walking, foot drop on leg side and ladder issues.

The skill and techniques used by an IR appear to be very important. I thought skipping the ultrasound and mrv as recomended by IR would prevent missing the problems but I guess it can still be missed if the IR dosen't have the proper skill set and technique.

Oh well, better luck next time.

1eye wrote: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