DrSclafani answers some questions

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

Postby bluesky63 » Mon Mar 29, 2010 8:20 pm

Dr. Sclafani, I have been thinking (or what substitutes for thinking) about your innovation with the cutting balloon. So . . if I am understanding this, the point of it is that the stenosed area was stiff and resistant to being stretched? I am curious if this is generally true, or if there are people who have instead floppy veins that just won't stay open. Then what?

And how on earth do you know where to look for the problems? How would you know that the malformations were confined to specific areas? How many miles of veins are there? It's amazing that it would be confined to a specific spot or two or four when there's a whole human body potentially full of issues.

This could keep me awake if I weren't so tired all the time. Maybe after I ever have a liberation procedure.

I hope these are OK questions. Thank you so much for your consideration. :-)

Edited to add -- I may have a tendency to hyperbole -- maybe there aren't miles of veins -- but my point is, I start to wonder, if a person has a tendency to make CCSVI malformations, do they also have a tendency to make other vascular malformations? And where in the system do you start and stop looking? You know about some specific places to look, but I start to wonder if there are more places to look.

If you're going with the congenital idea, are these malformations that all happen at a particular point of development, so you know to look for those specific ones? But it could be several intersecting causes . . . etc. . . . More research, I suppose. Thank you.

When it comes down to it I am in awe of your skill in maneuvering around these mini highways and in learning as you go. :-)
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Postby sbr487 » Tue Mar 30, 2010 4:00 am

Hello Dr.

I have couple of questions specifically pertaining to collateral veins.

1) Will an ultrasound scan show vein abnormality in the presence of collateral veins. Is it possible that the flow come out clean in the US scan even though there are issues with the veins

2) Do Dr's (or should) take into account the collateral veins when deciding whether correction is needed. Example, if the collateral veins are able to sufficiently compensate, is it necessary to intervene or there are any long term implications of leaving things as they are?
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Question from germany

Postby coin » Tue Mar 30, 2010 4:27 am

Dear Dr. Scalfani, my husband will be having a MR Angiography of the head and shoulders down to the chest on a TESLA 3.0 here in Munich.
Do yout hink this test, even so it is not done with the "inteventional" bit and not yet Dpoppler can alrady reveal or hint into the direciton of a CCSVI?
menaing does it make sense to have such test and not the Doppler and not the "inteventionell method "??
Tank you so much for your answer in advance and thanks for answering to everbody here...it is so appreciated...
best regards from Munich
Ines
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Postby savouryourlife » Tue Mar 30, 2010 6:02 am

Dear Dr. Sclafani,

I had the liberation treatment done in Germany on March 10 and have not been feeling what everyone else has/is feeling. I was told that I had 50% stenosis in 2 areas of the left int jugular vein. He actually cautioned me against doing the procedure as it was only 50%

You posted this which best describes my situation: I have been told that if the flow in the jugular veins is obstructed lower down, then flow is diverted to the vertebrals and that leads to collapse of the upper part of the vein. At the level of the carotid bulb, and the high IJ near the skull base.

The doctor went in to my brain area and ballooned this area and he did the part on the lower part of the jugular vein. I actually felt bruised at the lower back of my skull for a couple weeks.

The procedure took all of 20 minutes. Blood thinners were not given as he states he only uses them with stents. I see there is a question about blood thinners to you already, and I am curious as to whether it affected me negatively not to have them.

The next day my thinking started to get clear, energetic, bright... well I haven't felt like that in years! But it was short lived. By the next afternoon I was feeling incredibly unwell and have continued to feel worse than before the procedure. I have moments when I feel good, but my feeling 'good' is pretty much how I felt before the procedure.

The doctor states that at times it takes 4 weeks to feel the difference.

I feel that I most probably re-stenosed following the procedure. I can't afford to go back to Frankfurt [I'm in Toronto, Canada] so Im at a loss as to what I am supposed to do now. Is it possible to re-stenose that quickly? Or is it more possible that it just didn't work on me?

What advice do you give patients following the procedure in terms of restrictions, bed rest, etc. How long do you monitor patients in the hospital?

Thank you so much for your help on this site. We are really a lost bunch with very little medical help, especially locally!
Last edited by savouryourlife on Tue Mar 30, 2010 10:23 am, edited 2 times in total.
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby costumenastional » Tue Mar 30, 2010 6:15 am

Dear Doctor Sclafani,

what in your opinion could cause the exacerbation of some symptoms when the temberature rises?

I have a damaged left optic nerve and i cant help noticing that in the shower, when i am a bit more active or whatever, my vision get's worse. It s never perfect but still...
I get that my nerve is scarred by demyelination but how come it is not the same all the time? Same goes for my dizzyness, lighthead feeling, cog fog...you name it.
In fact most of us are temperature (cold-warm) sensitive but i guess you already know this.

If you had to GUESS, would you say that this effect is related to neuronal damage already accumulated to sites that react to altered blood flow?
There are other speculations, regarding the excessive iron deposits etc but i cannot "see" how this could relate let's say with the optic nerve.

All in all, is there any change in blood flow when temberature changes capable to lead to these effects?

Dear doctor: for some of us, heat is more or less debilitating.

Can you imagine damages nerves causing this global effect? I cant for i would have to hypothesize that my whole brain is demyelinated and under a 1,5 tesla magnet nothing can be seen. Even if it could, lesions tend to affect specific functions mostly. Blood circulation issues sound more logic.
To be honest, i noticed that my brain issues are there even after i have a smoke. How about that? I know... i ll quit!

I understand that this question is a bit generic but the opportunity to get an answer from someone like you is hard for me to pass.

God bless.
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Postby Squeakycat » Tue Mar 30, 2010 7:46 am

While it is quite obvious to all reading Dr. Sclafani's material that he is a very special person, thought I would post a reference to his impressive biograpy.

This is really just my excuse for asking Dr. Sclafani if there is a copy of his January 19th Grand Rounds presentation available.
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Postby Inge67 » Tue Mar 30, 2010 7:54 am

Finally a face to the name!

Great pic Doc!
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Postby Ruthless67 » Tue Mar 30, 2010 9:21 am

Dr. Sclafani,

Dang, that's a great Bio!!

I just knew from your posts that you were a special man and a lot smarter and compassionate than the "above average." doctor. Your heart is just truly amazing, I'm humbled.

Lora

Ps, Thanks Squeakycat for posting the bio.
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Postby bestadmom » Tue Mar 30, 2010 10:20 am

You should see his CV - 150 published papers, authored or co-authored 20 books, has been teaching IR in China for 28 years. He is being honored in September in China for his work and dedication. He is special beyond our wildest dreams, and so approachable, which is unheard of.
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Postby mangio » Tue Mar 30, 2010 12:03 pm

sfl,
Sorry to hear your liberation hasn't resulted in what you hoped for. It seems suddenly there are more than a few testimonials that are not
quite what was expected. This really nails home for me the need for
much more local expertise which of course we don't have at this time.
Must really be frustrating.

Here's hoping for more noticeable improvements for you.
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Postby drsclafani » Tue Mar 30, 2010 12:06 pm

Dr. Scaflani, may I repeat my question which was probably lost between IBT Posts. Thank you.

BBE wrote:
I have a question:
Dr. Scaflani, is it true that some people have and some don`t have valves in jugular veins? It is said that you don`t need valves above your heart. I wonder what prevents people without valves to get reflux.


It is true that not all people have valves in the jugular veins. According to some autopsy results, about 15% of patients do not have valves in both jugular veins.

it is not true that all patients somehow do not get reflux, it is likely that there is reflux. reflux up the jugular vein transiently may not be a signficant problem most of the time, however there are reports of transient global amnesia (TGA) in patients with high pressure reflux.

OK, i cannot resist the opportunity to describe what TGA is NOT: it is NOT losing your way home while traveling around the world. It is a short term and intermittent episode of complete amnesia.
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Postby drsclafani » Tue Mar 30, 2010 12:11 pm

Do you think that an open chest biopsy for a mediastinal tumor followed by radiotherapy to the area could result in scarring and venous narrowing leading to CCSVI and then MS? Have you seen venous stenosis in the setting of radiotherapy in your practice ? If you have, was it amenable to angioplasty alone or did it tend to be more resistant/fragile?

Thanks,

North


north,

You definitely can develop scarring and narrowing from radiation to the mediastinum. This can definitely lead to diminished outflow and probably cerebral edema and diminished cerebral flow.

however, our theory of ccsvi and MS is that the narrowing is congenital and that long standing vicarious flow through small collateral circuits somehow causes damage to the brain and leads to demyelinization and symptoms we call MS. Tumors or tumor treatments should not cause MS in the short term
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Postby drsclafani » Tue Mar 30, 2010 12:20 pm

Also when I was on the diet I lost 25lbs which is good, but I was light headed all the time, now that I'm not on the Swank diet I'm no longer light headed. Would you have any idea why?
Thanks again Dr Sclafani for all your time & effort to help us, I wish there were more doctors like you around willing to help.


I wish there were more doctors like me too.your unquenchable thirst for understanding and knowledge is sometimes overwhelming.

to answer your question, i must admit that i am not a dietician. I can't even think about a diet.

let alone one named for hillary swank
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Postby drsclafani » Tue Mar 30, 2010 12:30 pm

If the lower stenosis is primary, and the upper is just a consequence of reduced flow, it seems to me relieving the upper stenosis would not have any effect on the collaterals. Am I wrong?


Wow, nothing goes by. Remember most of this is theoretical at this point. I hope you don't think that i have direct line to the truth fairy.

i still think that in most circumstances the upper narrowings are phasic. Not to trust that opinion, I perform a variety of manuevers with the IVUS to prove to myself that there is no fixed narrowing. So far none have been. Eventually i will do the IVUS after completing the treatment to see whether the diameter improves say at 30 minutes. not yet.

I have also found that sometimes there is a narrowing in the lower area where the valve should be. I note that sometimes the catheter passes it in a way the open the valves termporarily at which time flow is brisk. Without the catheter, or with it against the wall in a different way, flow is slower and the collaterals are better seen.

But i repeat, I AM NOT SAYING THAT ALL UPPER NARROWINGS ARE INSIGNIFICANT
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Postby drsclafani » Tue Mar 30, 2010 12:51 pm

i was speaking to my caregiver about my hopes for ccsvi intervention realistically with the form of progression that i have, not unlike mitch and marc. i told him about you and i said,"he is a truly an angel of mercy." i was surprised by what i said, too.


Aliyah, so is your question, " how embarrassed do i feel to hear these praises?"

Firstly, just a little.
Secondly, it is sad to me that you are reacting to a situation where you do not usually feel like you are heard
Thirdly, I lived the first five years of my life in the pediatric examining room of my physician father and above the patient waiting room from age 6-13.

So this all comes second nature to me as i try to emulate my wonderful father...there, ive done it ....shared my personal life with you....
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