DrSclafani answers some questions

[drsclafani]

Admittedly I have yet to view the symposium video, but I was wondering if there is anyone else out there using IVUS for CCSVI?

I spoke with my Dr, and he said he would be prepared to use IVUS on me if I covered the additional costs (ie the single-use catheter), which I would be more than prepared to foot the bill for.

Neville at Georgetown, and a doctor at U. of MD both use IVUS. I don't remember who else at the symposium mentioned that they use it. Sinan? Petrov?

sinan and petrov do not.

[drsclafani]

Dr,
Since this entire CCSVI theory I cant stop observing peoples necks while I speak with them and the apparent jugular protrusions! Sick I know, but true. Why when people talk the jug veins are exposed out of the neck;when I was under the impression the vein collapses in the standing postition?

when people speak they often reduce the inflow of venous blood into their chest and heart. thus the veins distend "awaiting" expansion of the chest and drainage of blood into the chest. just like weighlifters and singers

[drsclafani]

Dr. Sclafani,

What are your thoughts on CCSVI treatment and taking the contraceptive pill?

My daughter recently called her gynecologist's office to change her contraceptive pill and spoke briefly about the possibility of having CCSVI treatment. Her doctor called her back and said she was very concerned about my daughter having any kind of vascular treatment whilst being on the pill because of the risk of blood clots.

Given that we are only just learning about blood flow and MS do you think the pill could be an issue?

Drury

contaceptives and steroids increase thrombogenicity. thus damaged intima is more likely to form clot on it. this can be counteracted by anticoagulation

[drsclafani]

Hi.

I just read your response to one of 'those' papers. Thought it was first-rate.

A couple of questions...

Do you think if a person has no reprieve from reflux because they have it in jugulars when prone and vertebrals when upright, that might lead to PPMS?

?

maybe, although i have seen rrms and spms also have problems with vertebrals and jugulars

[drsclafani]

Do you have anything to do with that 'Columbia' clinic in NYC?

just friends

[Cece]

"someone has suggested privately that this statement was provocative in its innuendo. sort of like luxuriant vicarious perfusion"

Seriously?!? LOL! Now my mind is in the gutter
I mean no disrespect - although I think laughter is good medicine!

i thought it would bring a smile to some

Luxuriant vicarious perfusion is pretty hot, you can't really argue otherwise....

[HappyPoet]

Quick...... a question.......... reposted from earlier............

Dr. Sclafani, what do you think is next for those pwMS who have had venoplasty the maximum number of times?

Thank you very much!
~HP

[Johnson]

Quick...... a question.......... reposted from earlier............

Dr. Sclafani, what do you think is next for those pwMS who have had venoplasty the maximum number of times?

Thank you very much!
~HP

What is the maximum number of times?

Since I have asked a question, I would just now like to take the opportunity to thank you, Dr. Sclafani, for your dedication to the study and remedy of CCSVI. Thank you for your sacrifices, great and small.

[drsclafani]

Quick...... a question.......... reposted from earlier............

Dr. Sclafani, what do you think is next for those pwMS who have had venoplasty the maximum number of times?

Thank you very much!
~HP

What is the maximum number of times?

Since I have asked a question, I would just now like to take the opportunity to thank you, Dr. Sclafani, for your dedication to the study and remedy of CCSVI. Thank you for your sacrifices, great and small.

i do not think that there will be an absolute number of times that the veins can be dilated. Rather i think that repeated dilatation is going to be the norm. I predict that it will become routine for some MSers to have periodic dilatation at intervals and that surveillance will be necessary so that interventions are done before symptoms return. It is unreasonable at this early stage to expect a one time fix.

At some point the congenital deformity of the wall may be replaced by scar tissue that becomes too resistant to dilatation. Similarly stents are likely to have the same problems, with intimal hyperplasia and in-stent stenosis becoming resistant to dilatation.

At some point i suspect that we will need to add some things to angioplasty, either drug, or energy or structure, to reduce the frequency and degree of restenosis.

When will that be necessary? when repeated venoplasty becomes too expensive, too burdensome and too frequent to be practical.

This will all need to be worked out as we go along.

[selkie]

Dr,
Since this entire CCSVI theory I cant stop observing peoples necks while I speak with them and the apparent jugular protrusions! Sick I know, but true. Why when people talk the jug veins are exposed out of the neck;when I was under the impression the vein collapses in the standing postition?

when people speak they often reduce the inflow of venous blood into their chest and heart. thus the veins distend "awaiting" expansion of the chest and drainage of blood into the chest. just like weighlifters and singers

Dear Dr. Sclafani,

Upon reading this I'm wondering, are there certain activities/exercises one should avoid before and after liberation that might be harmful?

For example, I had the retinas in both my eyes detach & surgeries to correct this. My eye doctor informed me certain inverted yoga positions (like lying on the floor with legs placed against the wall in an inverted L position) caused an increase of blood flow that could put pressure on the eyes (retinas). He told me to avoid any exercise of that sort.

Thank you. selkie

[Johnson]

Hi Doc,

I am slowly getting to posting images and videos with the express hope of having you have a look. I thought that you might appreciate it as much as I would. (bashful smile)

Here is the very brief video provided to me of the imaging of my azygos. video link Am I wrong to see two jets resembling reflux going upwards, and no flow of dye-saturated blood into the SVC?

I do not believe that any ballooning was performed on my azygos, and can only recall the Doctor saying that the azy was OK, but had "a bend" to it (the "gas" that they gave me put me in La-la Land - much to my chagrin).

I stripped the personal info., so any comment would be abstract.

Thanks for any input.

J-not

[Rogerp117]

Dr.,

Thank you for answering my query so quickly. The two studies that I have found regarding Statins and ms, the first at UC Berkeley, the second, at the medical University of South Carolina, were both small studies . But, they both showed significant, 33% and 41% respectively, reductions in relapses compared to controls. I would venture that this is a more significant reduction in relapse rates than any other currently approved ms drug. Quite a coincidence. I would also note that the absence of evidence linking cholesterol in the veins is very different from evidence refuting such a link.

My intent in bringing this up is to plant a seed of an idea regarding possible study of the use of Statins, or other cholesterol reducing agents - IE niacin, as a possible after liberation treatment therapy for reducing RE stenosis.

Forgive me if I'm out of line.

Roger

[suzq77]

Does anyone know who I can contact to get videos from the fundraiser to share with my IR?

I sent him a youtube link that has a privacy block on it now...

thanks!

[welshman]

Hi Dr S., I was just reading through the forum on CCSVI treatment "results" where someone commented that the clinic they had the imaging at had told them that their IJV's were o.k. so there was no need to check the azygous (that quote may not be 100% accurate but I think it's fairly close !!!!).
You may well have already answered or opined on this, in which case CeCe will be able to give me the info (thanks in advance CeCe ), if not, what do you think of that information, will the azy be o.k. if the jugs are o.k. ?
Thanks again for your advice.

[Cece]

You may well have already answered or opined on this, in which case CeCe will be able to give me the info (thanks in advance CeCe )

I believe his response to a similar question was that you can have a normal IJV and an abnormal azygous, one does not preclude the other. But that you do need 2 out of 5 of Zamboni's criteria and that this is not possible without involvement outside of the azygous IIRC.

To be thoroughly thorough, here is what DrS said a few weeks ago:

The azygos vein has not been investigated because, according to the physician, the azygos can not suffer from stenosis if the jugulars are normal.

That is incorrect. the azygous can suffer from malformation in the presence of normal jugulars. however it is thought that two venous outflow obstructions are necessary in order to have problems