DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

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Postby larmo » Sun May 23, 2010 9:50 am

It's just so I get email when this thread has changed. :)
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Postby drsclafani » Sun May 23, 2010 11:03 am

thisisalex wrote:
So, as you all know, I am not an electrician. And I am not a sound designer.

I am a humble plumber trying to improve your circulation.

Therefore I admit that sonography is not my expertise.

So, I went to the source of this CCSVI, Paolo Zamboni and asked him to advise me. With some editorial license he gave to me to correct the English, here is my correspondence with Dr. Zamboni's response. I will not do this again.

We can discuss further after you read from the general contractor



Dear dr. Sclafani,
It's truly touching for me to read the exchange of letters of two real heros.
Thank you very much for forwarding my topic to Zamboni!!
I enjoyed reading the answer from Zamboni. he is so calm. he has the power of knowledge. :)
I think this answer is OK, except one statement which was not addressed by dr. Zamboni:

dr. Panczel wrote:
...There are other interesting statements in Zamboni's papers. Above the vein occlusion the pressure is elevated, it would be logical for the wall to dilate, but Zamboni describes narrowing of the walls.


i have heard about this from patients, but don't know the reason for this phenomenon.

thank you again
have a nice Sunday,
alex


alex
that is easy. the elevation in pressure is not very much because the high arterial pressure is ultimately gone by the time the blood passes through the capillaries.. We are speaking of elevation of pressure that is minute, on the order of a few millimeters.

The reason the veins are not dilated is that the flow is diverted to a path of less resistance, which is usually the vertebral veins. Thus the veins collapse even though there might be a slight elevation of pressure.

This is often a difficult concept to accept by physicians and patients alike.
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Re: Dr Sclafani answers some questions

Postby drsclafani » Sun May 23, 2010 11:07 am

="girl69
Also, may I please ask your opinion on what Dr. Galeotti spoke about during last April's CCSVI workshop in Sardegnia: http://www.youtube.com/watch?v=1kP_mx9T ... re=related , he talks about the very complex spinal venous system and mentions the azygos related to problems in several other veins (like the renal vein) (at about 5:00 mns in).
Do you believe this is an area that needs to be explored more and can one maybe oversee problems more easily there ? If I have still have a problem, does it seem like a good place to look at ?

la ringrazio molto !!!
Michelle


yes, that is certainly one place to look, as well as failure to adequately dilate the jugular veins or recurrent obstruction of the IJV
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Postby Cece » Sun May 23, 2010 11:13 am

When Dr. Zamboni says that your IVUS data is urgent, isn't that awesome? Just more acknowledgement that it was a good discovery...we are after all in an age of discovery...wonder what else is out there?

His defense of his criteria seems sound, thank you for looking into this for us.

Your earlier response about the valves was helpful. I had been looking at is as if all the CCSVI issues were malformations in their own right, not that one malformation could then lead to a valve issue as a secondary effect.

I hope too that the time you spend here is extra time for you, that you get something out of it as well (encouragement and support goes both ways?), and that you are able to maintain your other duties and sleep and spend time with loved ones, as needed. I feel, as patients, it is easy to be endlessly needy...sorry about that. :)
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Postby Frank » Sun May 23, 2010 3:22 pm

Dear Dr. Sclafani,

I would like to ask you the following questions:

1. I’m a little concerned about the radiation dose required for the venography. I guess the angioplasty procedure is also done under X-ray, is that correct?
Could you tell how high the overall radiation (diagnosis and treatment) might approximately be – could it be compared to n-number of “usual” X-ray images or do you know about the approx. overall radiation level in the physical unit [Coulomb]?
Is there reason to be concerned about the radiation dose in conjunction with the diagnostic- and surgical procedure?

2. Would you think that 3 Tesla MRV does offer reasonable better diagnostic possibilities in CCSVI than 1.5 Tesla MRV?

3. I know the following question is a somewhat delicate – if you don’t want to comment on it (especially in an open forum) I do understand that, anyway:
In one of your answers you stated that currently there is a periodic exchange of information between a core group of CCSVI researchers including Dr. Vogl from Germany. As I am from Germany he would be my preferred CCSVI contact.
a) Do you know whether Dr. Vogl was trained by Dr. Zamboni – in a talk Dr. Sandy McDonalds from Canada indicated that a proper ultrasound diagnosis would only be possible after one has been shown the relevant techniques in practice.
b) Do you know about the percentage rate at which Dr. Vogl does find relevant venous issues (CCSVI) in people with MS. About how many cases has he evaluated?
c) Some member here on TIMS wrote that Dr. Vogl does not evaluate the azygos vein, do you know if this was true/is still the case. One user also reported that he was examined in the payed CCSVI-program at BNAC and also his azygos was not taken into consideration – how comes?
d) Does Dr. Vogl currently use venogram for diagnosis, does he use IVUS – as you indicated in this thread – IVUS is important to further identify the nature of a narrowing?
e) Does he share your view that the relevant stenosis is the one that is located down in the jugular and upper vein restrictions might just be a consequence rather than the underlying cause?
To be honest, with all these questions I try to figure out whether I would currently be in good hands in Frankfurt – especially in terms of a meticulous diagnosis of CCSVI.
My RRMS has not been that very bad (EDSS about 2.5, DX 2002) and active so I do not feel too hard pressure to find a “solution” right NOW!, which does not mean I feel anyway near comfortable. I try to make the “right” choice…

4. To me it currently seems as though “everyone” diagnosing CCSVI does it in a somewhat different way.
a) Could you guess the time-frame when we are going to have a standardized and largely accepted way to diagnose CCSVI.
b) Though the gold standard in CCSVI diagnosis is said to be venography, it seems to me that most sites rely on Doppler and MRV – how comes?


Thank you so much for your time and efforts. This discussion has helped me a lot with my understanding of CCSVI diagnosis and treatment.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby SofiaK » Sun May 23, 2010 4:01 pm

Dear Dr. S please, please help me understand Drs and what’s going on with my heart.
I'm just trying to survive each minute. Lately, my heart is acting yucky too. Bad enough that I can’t walk anymore or do ANYTHING without help, but now my heart. My heart beats are high and I'm breathless. My parents are super-worried. But as soon as Drs hear about MS, they just run. I don't get it. I have narrow veins + symptoms. They should care to fix this regardless of the label, as Drs. No??

Is the heart affected because of blood flow? I don’t know. I just really don’t know how long me + my heart can last.

Many thanks,
Sofia K.
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Postby LisaAnn » Sun May 23, 2010 4:31 pm

Sofia,
Have you reported these symptoms to your family doctor? My experience is that most physicians will respond to abnormal or unusual heart symptoms regardless of your diagnosis. Once I took myself to the emergency room for rapid heart rate and they immediately did blood work and a cardiogram and monitored my heart for a good six hours. They were not interested in my MS diagnosis. Maybe you could ask for a cardiac workup.
Lisa
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Postby drsclafani » Sun May 23, 2010 9:19 pm

Cece wrote:When Dr. Zamboni says that your IVUS data is urgent, isn't that awesome? Just more acknowledgement that it was a good discovery...we are after all in an age of discovery...wonder what else is out there?

His defense of his criteria seems sound, thank you for looking into this for us.

Your earlier response about the valves was helpful. I had been looking at is as if all the CCSVI issues were malformations in their own right, not that one malformation could then lead to a valve issue as a secondary effect.

I hope too that the time you spend here is extra time for you, that you get something out of it as well (encouragement and support goes both ways?), and that you are able to maintain your other duties and sleep and spend time with loved ones, as needed. I feel, as patients, it is easy to be endlessly needy...sorry about that. :)


cece
some of the malformations are of the valves themselves. abnormal location, abnormal leaflets, fused leaflets, etc. there are other malformations such as thickend wall and narrowed or atresia (inadequate development) but i think that this is mostly a valve problem
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Kings County IRB Status

Postby hwodin » Mon May 24, 2010 10:20 am


TO: CCSVI Kings County Hospital IRB Members
FM: Me With MS

I WANT TO GET TREATED


My quality of life is slipping away while a viable treatment is being discussed, debated, criticized and reviewed. WHICH IS MORE IMPORTANT IN A CIVILIZED SOCIEY??
Maybe you have time......I don't.

There is enough anecdotal info to support immediate resumption of Dr Sclafani's work.

I already emailed the President of HHC directly from the HHC website. Would a few thousand emails will help our cause?[size=18]
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Postby Cece » Mon May 24, 2010 3:49 pm

drsclafani wrote:some of the malformations are of the valves themselves. abnormal location, abnormal leaflets, fused leaflets, etc. there are other malformations such as thickend wall and narrowed or atresia (inadequate development) but i think that this is mostly a valve problem

I thought it was the other way around...more of the thickened-wall & atresia sorts of malformation, less of the valve malformations...thanks for clearing that up.
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Postby FlashHack » Mon May 24, 2010 3:56 pm

Of the 65 patients in Zamboni's seminal paper 30 had a septum/valve malformation on the right IJV and 28 had one on the left IJV.
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Postby lucky125 » Mon May 24, 2010 4:41 pm

FlashHack wrote:Of the 65 patients in Zamboni's seminal paper 30 had a septum/valve malformation on the right IJV and 28 had one on the left IJV.


Thanks for that, FlashHack. Would it be too big a bother for you to share where in his paper you found this info? You can pm me so we don't muck up Dr S's thread.

Thanks, Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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warm hands/ feet after angioplasty..

Postby PCakes » Mon May 24, 2010 5:26 pm

Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes
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Re: warm hands/ feet after angioplasty..

Postby eric593 » Mon May 24, 2010 6:22 pm

PCakes wrote:Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes


Or is the warmth commonly felt by people a side effect of the contrast dye used as opposed to improved circulation?

~someone here mentioned this possibility and I see it listed as a possible side effect of contrast dye:

Possible side effects or reactions include headache, dizziness, irregular heartbeat, nausea, warmth, burning sensation, and chest pain
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Postby drsclafani » Mon May 24, 2010 8:30 pm

Frank wrote:Dear Dr. Sclafani,

I would like to ask you the following questions:

1. I’m a little concerned about the radiation dose required for the venography. I guess the angioplasty procedure is also done under X-ray, is that correct?
Could you tell how high the overall radiation (diagnosis and treatment) might approximately be – could it be compared to n-number of “usual” X-ray images or do you know about the approx. overall radiation level in the physical unit [Coulomb]?
Is there reason to be concerned about the radiation dose in conjunction with the diagnostic- and surgical procedure?


We should all be concerned about radiation. But we should not panic because we fear cancer. We have to balance the effects of radiation against the benefit derived. Unnecessary irradiation is of no positive value and should be avoided.
Cancer can be caused by radiation by damaging chromosomes. that risk can be stochastic which means there is no threshhold and the risk is not dose dependent or deterministic which means that risk is dose related.

We receive about 2 mSy per year in radiation from our surroundings, more if we are an airline pilot, or live at high altitude. That annual ambient dose is affected by the type of house we live in, by the use of smoke detectors and any number of other reasons.

the dose of an angiogram of the neck and chest generates about 5 millisievert, (mSy) which is a definition of dose absorbed.

Lets put that in perspective. The dose is about the same as 170 chest xrays. A head CT scan is 2 mSy, a chest CT 8mSy. Annual allowable occupation dose limit is 50 mSy. the LD50 is 5000 Sy.

The risk of additional cancer developing in a 40 year old man who has jugular venogram is 0.033% compared to the 50% probability that that man would develop cancer over the rest of his life.

So if we improve quality of life, or longevity of an MSer who is liberated, then the risk of the xrays necessary to do that treatment is worth taking.



2. Would you think that 3 Tesla MRV does offer reasonable better diagnostic possibilities in CCSVI than 1.5 Tesla MRV?


It would show plaques better. But it would not show iron deposits better, or the veins better. To the best of my knowledge, which I admit is not that great in MRI.

3. I know the following question is a somewhat delicate – if you don’t want to comment on it (especially in an open forum) I do understand that, anyway:
In one of your answers you stated that currently there is a periodic exchange of information between a core group of CCSVI researchers including Dr. Vogl from Germany. As I am from Germany he would be my preferred CCSVI contact.
a) Do you know whether Dr. Vogl was trained by Dr. Zamboni – in a talk Dr. Sandy McDonalds from Canada indicated that a proper ultrasound diagnosis would only be possible after one has been shown the relevant techniques in practice.
b) Do you know about the percentage rate at which Dr. Vogl does find relevant venous issues (CCSVI) in people with MS. About how many cases has he evaluated?
c) Some member here on TIMS wrote that Dr. Vogl does not evaluate the azygos vein, do you know if this was true/is still the case. One user also reported that he was examined in the payed CCSVI-program at BNAC and also his azygos was not taken into consideration – how comes?
d) Does Dr. Vogl currently use venogram for diagnosis, does he use IVUS – as you indicated in this thread – IVUS is important to further identify the nature of a narrowing?
e) Does he share your view that the relevant stenosis is the one that is located down in the jugular and upper vein restrictions might just be a consequence rather than the underlying cause?
To be honest, with all these questions I try to figure out whether I would currently be in good hands in Frankfurt – especially in terms of a meticulous diagnosis of CCSVI.
My RRMS has not been that very bad (EDSS about 2.5, DX 2002) and active so I do not feel too hard pressure to find a “solution” right NOW!, which does not mean I feel anyway near comfortable. I try to make the “right” choice…

Tomas is diligently trying to answer these questions, as am I. We discuss methodology of trials, methods of diagnosis and treatment. I do not feel qualified to judge his work at this point.

4. To me it currently seems as though “everyone” diagnosing CCSVI does it in a somewhat different way.
a) Could you guess the time-frame when we are going to have a standardized and largely accepted way to diagnose CCSVI.
b) Though the gold standard in CCSVI diagnosis is said to be venography, it seems to me that most sites rely on Doppler and MRV – how comes?


I would guess 3-5 years of study, papers, experience, dialogue and results.

Most sites still rely upon doppler and mrv because they are not invasive. Much of the initial fervor was directed at evaluating dr Zamboni's ultrasound findings. I suspect that that will abate some over the next several years and will depend upon who is interested in discovery. At the moment, I believe it is the interventionalists who are developing interest in ccsvi.

Thank you so much for your time and efforts. This discussion has helped me a lot with my understanding of CCSVI diagnosis and treatment.


it is my pleasure

--Frank[/quote]
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