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Dear Dr. Sclafani:

Elsewhere on this forum I started a topic 'since ThisIs'MS' gadolinium-enhancing lesions'.

In it I note that placebo effect with this result is impossible. The result I am discussing is the 38% reduction found by Dr. Zamboni in gadolinium-enhancing lesions, from 50% to 12%. Although it has no bearing on prevalence, I think it has direct bearing on the efficacy of the Liberation procedure.

I believe you or someone should run a trial of the procedure with that as an end-point, to verify Dr. Zamboni's result. This would obviate the need for placebo control, since it is not controllable by placebo.

I do not know if a neurologist is strictly necessary for this, as I believe IRs know more about MRIs than they do.

David1949 wrote:Dr. Sclafani
2) Is there a reason why the jugulars shut down when we stand? Could it be that too much blood flow from the brain might also be a problem, so the body reduces the flow in the jugulars?

I'm just a dumb cluck from out of town, but too much flow from the brain sounds like it would be preceded by too much blood to the brain. I think you might notice.

drsclafani wrote:If someone gets me the full article, i will review in more depth

s

If Cheer does not have the Chung article, there is little hope for the rest of us!

drsclafani wrote:The web lesion is a new focus, began after i was put in a straightjacket. I did not notice anything like this on IVUS but it was early and i wasnt prepared to look for it.

We were already talking about missed azygous stenoses back then, along with how to image the azygous. It was a tricky vein even before these invisible fibrous spider webs.

Have Dr. Zamboni or Dr. Galleoti weighed in on this?

Dr S.

When I hold my breath and tense up, my neck veins bulge. One side appears to back-fill gradually upwards. The other side nothing much happens and then a semi-circular bulge appears around my jaw line. Does this indicate ccsvi? Or am I just doing a valsalva maneuver a la Doepp?

The fact that both sides behave differently suggests to my un-medical brain that something is amiss.
I posted a clip on YouTube. If you have a minute could you take a look?



Thanks

ConstableComfortable wrote:Dr S.

When I hold my breath and tense up, my neck veins bulge. One side appears to back-fill gradually upwards. The other side nothing much happens and then a semi-circular bulge appears around my jaw line. Does this indicate ccsvi? Or am I just doing a valsalva maneuver a la Doepp?

The fact that both sides behave differently suggests to my un-medical brain that something is amiss.
I posted a clip on YouTube. If you have a minute could you take a look?



Thanks

The valsalva manuever such as you did, increases the pressure in your chest veins which drive the blood north and south of the heart. Thus you are either seeing distension of veins because they cannot empty because the valves are shut or the blood is going toward your head by an incompetent valve or because there is no valve. The valves you point to appear to be the external jugular veins and they might not have valves. Or one can have a valve that works and the other doesnt have a valve

venous insufficiency because of an incompetent valve can allow much blood to advance up into the jugular vein.

Venous insufficiency related to CCSVI results when there is inhibition of blood leaving the neck to enter the chest because the veinsare stenotic and have to find another way out of the n eck

such a shame that there are two types of venous insufficiency of the jugular veins. it makes this whole thing so confusing

Cece wrote:

drsclafani wrote:If someone gets me the full article, i will review in more depth

s

If Cheer does not have the Chung article, there is little hope for the rest of us!

drsclafani wrote:The web lesion is a new focus, began after i was put in a straightjacket. I did not notice anything like this on IVUS but it was early and i wasnt prepared to look for it.

We were already talking about missed azygous stenoses back then, along with how to image the azygous. It was a tricky vein even before these invisible fibrous spider webs.

Have Dr. Zamboni or Dr. Galleoti weighed in on this?

not that i am aware of

1eye wrote:Dear Dr. Sclafani:

Elsewhere on this forum I started a topic 'since ThisIs'MS' gadolinium-enhancing lesions'.

In it I note that placebo effect with this result is impossible. The result I am discussing is the 38% reduction found by Dr. Zamboni in gadolinium-enhancing lesions, from 50% to 12%. Although it has no bearing on prevalence, I think it has direct bearing on the efficacy of the Liberation procedure.

I believe you or someone should run a trial of the procedure with that as an end-point, to verify Dr. Zamboni's result. This would obviate the need for placebo control, since it is not controllable by placebo.

I do not know if a neurologist is strictly necessary for this, as I believe IRs know more about MRIs than they do.

MR is thought by many to be an objective measure of the effects of treatments. However the FDA wants to favor clinical indicators

pklittle wrote:Dr. Sclafani,
Since each Dr. treating CCSVI seems to have their own twist (no pun) on how to test, pick the balloon size, etc, what advice would you give a patient that has been treated with venoplasty but had no relief of symptoms? More specifically, would it be worthwhile to seek treatment elsewhere by someone who is also experienced but who's approach is a bit different?
Pklittle

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

Dear Dr. S.
I've just returned from my 3 month f/u ultrasound and was told that even though there are two remaining areas that fit the Zamboni's criteria, nothing will be done because they are the two least significant in importance. There is a good flow through the jugulars., so no justification for a revisit. When I asked about the azygos vein [ my symptoms have always been lower extremity mobility issues] I was told that, since there is only a 14% restenosis in that area, it's a no go....Could I not be a member of the 14% club?
I had no relief of symptoms post angio and did have a narrowing in the azygos arch which was treated. I am scheduled to go back up in 6 months.
I'm wondering if I should try to find someone to revisit or reimage the azygos area? I could use your advice.......

pklittle wrote:

pklittle wrote:Dr. Sclafani,
Since each Dr. treating CCSVI seems to have their own twist (no pun) on how to test, pick the balloon size, etc, what advice would you give a patient that has been treated with venoplasty but had no relief of symptoms? More specifically, would it be worthwhile to seek treatment elsewhere by someone who is also experienced but who's approach is a bit different?
Pklittle

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

I'll add it here in my response, third time's the charm.

drsclafani wrote:MR is thought by many to be an objective measure of the effects of treatments. However the FDA wants to favor clinical indicators

The FDA? Is this old info, like they always want to favor clinical indicators, or new info, like they've taken an interest in CCSVI treatment? It was reported the other day that someone had their ccsvi appointment canceled because Dr. Siskin had a meeting with the FDA that day.

Dear Dr. Sclafani:

Since when is the FDA involved? I think it is critical that this finding (remember Putnam's dogs?) is reproduced in a clinical trial setting. Yes, clinical findings are important, but when you have been incapacitated so long, I would expect any opportunity would be welcomed.

This finding is critical, to provide evidence of the ability to reduce a key indicator of MS activity tested by Dr. Zamboni. It would put a lot of skepticism to rest. If you are worried about not being first, i.e., that Dr. Zivadinov and Dr. Mehta will publish such a result, well, too much truth never hurt anyone.

Is the FDA the new "dark force," now that you have no IRB? I should think you would jump at a measure which is outside the power of the placebo.

1eye wrote:Dear Dr. Sclafani:

Elsewhere on this forum I started a topic 'since ThisIs'MS' gadolinium-enhancing lesions'.

In it I note that placebo effect with this result is impossible. The result I am discussing is the 38% reduction found by Dr. Zamboni in gadolinium-enhancing lesions, from 50% to 12%. Although it has no bearing on prevalence, I think it has direct bearing on the efficacy of the Liberation procedure.

I believe you or someone should run a trial of the procedure with that as an end-point, to verify Dr. Zamboni's result. This would obviate the need for placebo control, since it is not controllable by placebo.

I do not know if a neurologist is strictly necessary for this, as I believe IRs know more about MRIs than they do.

one eye
what dr z found was the there was a 38% reduction in NEW LESIONS.
Some neurologists say that that is the natural way of things: that new lesions progressively reduce with time and that exacerbations are reduced with time as the disease goes into the progressive form

but nonethelss, it is compelling data

pklittle wrote:

pklittle wrote:Dr. Sclafani,
Since each Dr. treating CCSVI seems to have their own twist (no pun) on how to test, pick the balloon size, etc, what advice would you give a patient that has been treated with venoplasty but had no relief of symptoms? More specifically, would it be worthwhile to seek treatment elsewhere by someone who is also experienced but who's approach is a bit different?
Pklittle

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

1eye wrote:Dear Dr. Sclafani:

Since when is the FDA involved? I think it is critical that this finding (remember Putnam's dogs?) is reproduced in a clinical trial setting. Yes, clinical findings are important, but when you have been incapacitated so long, I would expect any opportunity would be welcomed.

This finding is critical, to provide evidence of the ability to reduce a key indicator of MS activity tested by Dr. Zamboni. It would put a lot of skepticism to rest. If you are worried about not being first, i.e., that Dr. Zivadinov and Dr. Mehta will publish such a result, well, too much truth never hurt anyone.

Is the FDA the new "dark force," now that you have no IRB? I should think you would jump at a measure which is outside the power of the placebo.

if you don't mind, i prefer to let someone else address this. I just want to care for patients, not get involved in politics at this point.

belsadie wrote:Dear Dr. S.
I've just returned from my 3 month f/u ultrasound and was told that even though there are two remaining areas that fit the Zamboni's criteria, nothing will be done because they are the two least significant in importance. There is a good flow through the jugulars., so no justification for a revisit. When I asked about the azygos vein [ my symptoms have always been lower extremity mobility issues] I was told that, since there is only a 14% restenosis in that area, it's a no go....Could I not be a member of the 14% club?
I had no relief of symptoms post angio and did have a narrowing in the azygos arch which was treated. I am scheduled to go back up in 6 months.
I'm wondering if I should try to find someone to revisit or reimage the azygos area? I could use your advice.......

the description is a bit confusing. Zamboni has five criterial. He states that 2 or more are compatible with ccsvi. if two are present, the ccsvi is still present. i would think that this warrants an angiogram unless there has been profound improvement and you don not want to upset the apple cart. That does not sound like your situation. so i guess you need more clarity about the doppler findings