DrSclafani answers some questions

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

Postby drsclafani » Sun Aug 01, 2010 10:11 am

HappyPoet wrote:
drsclafani wrote:
HappyPoet wrote:Hello Dr. Sclafani,

It seems I owe you a question. :wink:

Here is the question I owe you:

drsclafani wrote:
Cece wrote:Lately with the emergence of so many more docs on the field, they all have different strategies. I know of a doc doing unilateral ballooning, so if both jugulars need ballooning, he schedules them for different days. (This is quite cautious?)

this is quite proposterous!

Now I'm quite terrified! Can you please be more specific?
Thank you.

~HP


Let me put it simply:
you have to go to shopping mall where that are two stores that are next door to each other and from which you want to purchase some items at both. You walk, chair or drive to one store, buy what you need, then go home without visiting the other store. Then the next day you do the same thing to go to the second store.

a waste of energy, double the risk of a car crash, etc, and maybe the second store will not have the item the second day


Thank you, Dr S. I was worried beyond those reasons -- I wondered if you were implying there was some direct medical reason within the procedure itself that was a problem.

Those accepting this offer of help do so agreeing to the two-treament strategy, and I imagine all have different reasons for their decision. Due to the possibility of pain, which, for me, can cause an exacerbation with new symptoms, my pain management doctor dismissed concerns of a second "shopping trip" so that I can have time to recover from pain, if needed.

I know of other reasons people are opting for this strategy, and like most things in life, strategies can change over time. Also, doctors have been bringing back patients for a second "shopping trip" for many reasons, and the two-treatment strategy is just a different manifestation of more shopping which allows the doctor more time to assess the change, if any, in vein physiology from the first procedure and more time to consider more options, especially for the more difficult ballooning situations, without the pressure of time constraints due to patients' locked-in travel arrangements.

This reminds me of the $650 IVUS question -- is the cost worth the benefit to the patient: Would I pay the extra money for an IVUS catheter if it gives my doctor a better chance at finding all problems? Would I make a return trip if doing so gives my doctor time to consult with other doctors about my case?
Yes and Yes. Especially if I trust my doctor.


i understand your reasoning. i just do not agree that it is worthwhile
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Re: all Cece's questions....

Postby drsclafani » Sun Aug 01, 2010 10:20 am

Cece wrote:
drsclafani wrote:Tariq has not yet shown outcomes using those large diameters of dilatation. He did show, however, that the vein could tolerate those diameters . It was very helpful to see that the frontier.

Are we talking about never-done-before diameters? Or just never-done-before in CCSVI-stricken veins?

these are impressive diameters for any disease process.

drsclafani wrote:we have spoken about this. The original carotid stenting that was approved by CMS required that a vascular surgeon certify that the patient was not a candidate for surgery. Carotid stenting was relegated to secondary status of limited use because the initial trials showed that percutaneous stenting had more risks than open surgery. Some of the initial trials compard surgery done by experts against stenting done by people who had done as few as four cases. self defeating prophesy.

Now, as the next generation of trials is done comparing experienced operators of both methods, stenting is shown to have fewer complications.

Sound familiar? Lets wait on the RCTs

But the RCTs aren't waiting, are they?


well, i refused to be forced into a RCT with sham as suggested. i stick by my guns that rct are not ready for prime time

cece wrote:Will the International Society of Neurovascular Diseases be the one to help focus these efforts? Is it through this society that the ideal randomized multicenter trial with trained investigators who have completed many procedures could be funded?


it will bring together many investigators, who many then form alliances for multicenter trials. its meetings will allow cross fertilization of ideas
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Re: video

Postby drsclafani » Sun Aug 01, 2010 10:23 am

NHE wrote:
Nunzio wrote:
drsclafani wrote:we are talking about six hours of video, dont you think we will exceed 10gB

Not necessarily; I can record one hour of TV programming for less than a gigabite, it depend on the quality of the image.
I can only go by what Girlgeek is saying and she asked for a 9 gigabite drive.


Agreed. I have a Panasonic DVR. If I record in EP mode, then I can get 8 hours of video on one 4.7 GB DVD-R disc. The quality is not HD to be certain, but it's nearly the same as 480i and still watchable without getting annoyed.

NHE


ok, will let you know how big the files will be once medical illustrations sends it back to me, hopefully this week!!!!!
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Postby drsclafani » Sun Aug 01, 2010 10:29 am

CCSVIhusband wrote:
drsclafani wrote:
joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?


Dr. S:

It seems there have been cases of stenting the ascending lumbar veins ...
any thoughts as to if stenting the lumbars may be feasible? or even useful in the case of CCSVI ...
http://www.ncbi.nlm.nih.gov/pubmed/17012012

the two cases referred to in your citation were for treatment of complete occlusion of the inferior vena cava. This resulted in major league obstruction and high flow through collaterals, including the ascending lumbar vein. There must have been massive blood flow through that the ALV, keeping it open. in ccsvi we are speaking about getting relatively low flow out of the spine through the alv or the lumbar veins. more of a trickle. i would worry about angioplasty of these small veins failing.

but we are not quite ready to be treating the smaller veins just yet. we need to focus mostly on the larger veins right now
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Postby drsclafani » Sun Aug 01, 2010 10:33 am

lifeisgood wrote:Asked previously, but it was the day of the symposium and I think think it might have been missed. There did seem to be some interest and also others that's experienced the same type of relief. In fact, someone started another thread regarding it if you'd like to relay your own experience:

Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

Here is our story:
About two years ago, on a typical Saturday afternoon, my husband (RRMS for about 20 years) had been sitting for a short while when he noticed for some reason his numbness in his legs felt much better. I was in the room with him and it was somewhat eery, because he had this confused look on his face. He shook his legs, stood up and walked around to experience the feeling of normalcy return to his lower legs. He walked around the house, went up and down the stairs (which he could do before, but he was trying to "test" things out) all very confused about what he was feeling. At the time, he told me that his legs felt normal. It gave me goosebumps watching him experience it. It was shortlived though, and within an hour, as I remember, he was back to 'his' normal.

Could his veins somehow have moved or twisted so that bloodflow was able to make it through? It was a very "out of body" experience for him. Anyone else ever experience a drastic temporary improvement like this before?

Thanks Dr. S - You're the best !


mysterious. because the effect was rapid and fleeting, one can propose that the effect had something to do with blood flow, perhaps it was one of these obstructions that could get stuck in the open position for a while.

would be great if it just stayed that way.

has your husband had an ultrasound yet? or venography?
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Postby drsclafani » Sun Aug 01, 2010 10:36 am

joana123 wrote:
drsclafani wrote:
joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?



Dear dr.,

i'm PPMS, Dg.2004.g, last five months in a wheelchair. The lumbar venography is not doing.
The groin was up from right leg. They not mentioned study about azygous by venography and angioplasty was not done there.

With respect, A.


azygous venography (and perhaps ascending lumbar venography) should be done in every patient undergoing venography. especially in ppms
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Re: Me too

Postby drsclafani » Sun Aug 01, 2010 10:38 am

Rosegirl wrote:Lifeisgood,

Re short term improvements: My only symptom is that for the last ten years, my walking has deteriorated. Now I wall-walk around the house and for the last five years, I use a scooter when I go out.

Several times I have suddenly been able to walk perfectly! Perfect balance, easy gait, swinging my arms -- it all worked. But it never lasted more than a few minutes. I never knew why it came or went.

Maybe an explanation for this would be something like a valve that sticks? When it temporarily works, so does everything else?


have you had a ultrasound, venography or treatment yet?
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Re: video

Postby Donnchadh » Sun Aug 01, 2010 10:53 am

drsclafani wrote:
NHE wrote:
Nunzio wrote:
drsclafani wrote:we are talking about six hours of video, dont you think we will exceed 10gB

Not necessarily; I can record one hour of TV programming for less than a gigabite, it depend on the quality of the image.
I can only go by what Girlgeek is saying and she asked for a 9 gigabite drive.


Agreed. I have a Panasonic DVR. If I record in EP mode, then I can get 8 hours of video on one 4.7 GB DVD-R disc. The quality is not HD to be certain, but it's nearly the same as 480i and still watchable without getting annoyed.

NHE


ok, will let you know how big the files will be once medical illustrations sends it back to me, hopefully this week!!!!!


Please consider an physical option as well....DVD disk?, flash drive? I live in a rural area with no broadband connection so downloading isn't a realistic choice.

I would gladly pay for such a copy.

Donnchadh
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Got MS?.....Get Liberated!
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Postby Zeureka » Sun Aug 01, 2010 11:03 am

Dr Sclafani, thank you for your reply and sorry for my questions that would be difficult for anyone to answer...and you always provide very clear answers.
In fact the second vein issue - not only for my friend, but also for me still a mystery...My left jugular was clearly occluded by this pathologic valve. Whereas for my right they only noticed during the procedure itself in Poland a lighter narrowing and I was told "we ballooned it as well to ensure". On the CD video of the procedure you can see it in fact that where they ballooned my right jugular, it was not really closed, only a slightly bit narrower - and in the doppler exam neither Ferrara nor Katowice had seen a stenosis in my right jugular. Azygos they said they checked in Poland, but without IVUS maybe difficult to exclude.

As regards the 10 days headaches after procedure if am honest, I now rather tend to guess from their severity/stabbing+burning type and length, for the small relapse. Although the other possible option of transient headaches encouraged and helped me at the time I had them and in the end noone can really know. Remains a mystery for life:wink: But fortunately now they are completely gone. Maybe my body was stressed from the procedure and travel, I think that can happen?

And the long-term effect before 1 year difficult to judge? On fatigue was as of second month better. I hope I will feel the difference now also at work (it's a kind of test the next weeks) and in end September good can get this check-up in Belgium.
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Postby Cece » Sun Aug 01, 2010 12:27 pm

Thank you for all the answers. I am curious to see what will come of Dr. Sinan's work especially. I hope too that others will follow your lead and hold off on the randomized controlled trials.

Dr. Hubbard has posted the following account:
The founders of the new society met at Salvatore Sclafani's lovely home in a pretty part of Brooklyn overlooking a park. Salvatore was wearing a paint-splattered t-shirt and a wool knit skull cap on his head. The next day he was wearing a suit and I almost didn't recognize him. The rest of the "founding fathers" were all there or on the phone. Mark Haacke whom I already knew was preoccupied with the phone connections to Zamboni in Italy and Schelling in Austria and BB Lee at Georgetown and Zahed in Detroit. Mark Godley is the anesthesiologist who runs the Falls Creek private hospital in Vancouver. He was very friendly and helpful and was charged with keeping the minutes. The two Italian neurologists Fabrizio Salvi and Ilaria Bartolomei who work closely with Zamboni were also there and were friendly but spoke little. Robert Zivadinov I had met briefly in Hamiton so I recognized him. As I remembered he has a gruff manner, but over the next two hours I came to respect his judgement and admire his courage. He has been a leading big pharma researcher of the various MS immunosuppressants and since he began studying CCSVI big pharma has been shunning him. Mark led us efficiently thru the creation of the new Society, the International Society for Neurovascular Disease, I am the treasurer, Zamboni the first president, Zavidinov the next, Sandy McDonald, Mike Dake, Ashton Ambry Franz Schelling, and several others will be the founding officers. It felt like I was witnessing John Adams and Thomas Jefferson at the declaration of independence.

The next day was Sal's conference for interventional radiologists. I spoke about fMRI as a measure of venous drainage from the cerebral cortex. Haacke gave his usual exhaustive review of MR in MS. Salvi gave a thorough summary of the status of MS research. Sclafani was clearly the grandfather of the IRs and kept the meeting moving. Sinan from Kuwait, Petrov from Bulgaria, Sisken from Albany and another IR whom I didn't recognize summarized their experience doing venoplasties. This was what the audience came for and it was a very animated discussion of catheter strategies, balloon sizes and styles ("cutting" vs "kissing") and pressures and how aggressive to be. Petrov does stents in half his patients and is also more aggressive about treating the upper jugular. Michelle Brown gave a short talk about "patient advocacy" and announced Joan Beal's "CCSVI Alliance." Another advocacy group was also there "Angioplasty for All" championed by Diana Price although she was not there, accompanied by their attorney Edward Conway; they plan a class action law suit in Ottawa. There were also a few neurologists in the audience but no hostile questions from them. In fact no questions at all. The general consensus was that there would be a rapid learning curve on the best techniques to open the veins and keep them open, but that CCSVI was the most important advance in MS research in 50 years, maybe ever. I began my talk by saying "I'm a neurologist and for the first time am a bit embarrassed about it."
copied and pasted from David's entry on PLM

David Hubbard MD


* What is a kissing balloon, is it similar to a cutting balloon?
* Dr. Zivadinov had been a big pharma researcher and now big pharma is shunning him? This would only affect neurologists, yes? Because IRs aren't as beholden? But if a neurologist wants to dabble in CCSVI but not commit fully, the risk of losing big pharma funding for their other projects is very real?
* A paint-splattered t-shirt and a skull knit cap? Can we get a picture of that? ;)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Drury » Sun Aug 01, 2010 1:43 pm

Dr. S,

The symposium was amazing!

Thank you for managing to get together such an erudite group of people at such short notice, at their own expense and for giving so much of your time to CCSVI.

My husband and I (I'm the English lady who had her husband's name tag on by mistake) felt so privlleged to meet you and to be able to witness the coming together of like minds on Monday.We could sense your frustration in wanting to get 'Back in the Saddle' and sincerely hope that you will be up and running again soon. We are all here offering whatever we can to help you on that road.

With regard to Dr. Tariq's technique can one overstretch the veins and if not is that not a better solution than using stents?

Sorry if you have already answered this question as my computer has been down.

WIth regard to the movie - Dr. S should play Dr. S as he is a natural!

Drury






It was so obvious that you are
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Postby Blaze » Sun Aug 01, 2010 2:51 pm

Dr. Sclafani: Are you willing to comment on the study published in Neurology and cited in this link from in another thread?

http://www.neurology.org/cgi/content/ab ... 74/13/1041

The conclusion was that "Vascular comorbidity,, whether present at symptom onset, diagnosis or later in the disease course, is associated with a substantially increased risk of disability progression" in MS.

This was published in the "most widely read and highly cited peer-reviewed neurology journal." In my lay mind, this seems to confirm what Dr. Zamboni, you and the others are saying. With a study of almost 9000 people with MS by researchers from respected institutions throughout North America, will the neurologists be able to dismiss this as easily as they did Dr. Z?

Thanks.
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Post-symposium

Postby LauraV » Sun Aug 01, 2010 3:00 pm

My husband and I ...felt so privlleged to meet you and to be able to witness the coming together of like minds on Monday.We could sense your frustration in wanting to get 'Back in the Saddle' and sincerely hope that you will be up and running again soon.


So Dr. Sclafani, do you have any idea when you will be "back in the saddle" again?
You put together a significant meeting of significant doctors discussing the most significant milestone in MS treatment in 50 years. It took place in the hospital whose IRB shot you down. Shouldn't this important event help your case? I wonder if anyone on your IRB attended. If they didn't will they be able to read about it? Have you received any feedback from them?
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Balloon Pressure

Postby JohnJoseph » Sun Aug 01, 2010 3:59 pm

Dear Dr S,
Many thanks for The Symposium a week ago!

Another technical question, I don't think it has been much discussed so far:
- What pressure is being applied to the balloons - are there different cathegories of baloons based on pressure?
- I understood the applied balloons are hydraulic inflated, using a contrast dye in the liquid media for good visibility of balloon shape. Are there pneumatic driven, i.e. gas inflated ballons used as well?
- How is the pressure applied? Manually, with a pressure indicator you need to watch (possibly with a pressure limiter you can set), or by means of a device automatically controling the final pressure to reach as well as pressure progression over time, once you put these data in and push "start" button?
- From a symposium video - here my thanks to Girlgeek (<shortened url>) - I remember your question to Dr Tariq Sinan during his presentation on using ballooning inside the azygous as an 'imaging technique' of the circular narrowings of valve/web, visible by the indentation(s) they cause on the inflated balloon. You have asked him what pressure he applies/records at the balloon, but he did not answered directly in terms of numbers. He talked about using the nominal pressure specific to each balloon (although sometimes stretching it a bit more, as the balloon "won't burst so quickly").
- Can you interprete his answer bit more by now?
- IYO, how destructive could this "balloon imaging"-technique be for healthy, functional valves? I guess one needs at least some functioning valve(s) left in the azygous - is this correct?
- He mentioned that around 95% of patients are having abnormal valves and/or webs in azygous, also distal from the arch - would you estimate be that high ? And, how well do we know how a normal valve here should look like under the available phlebography technique?

JohnJoseph
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Postby girlgeek33 » Sun Aug 01, 2010 5:11 pm

Different kind of question for you Dr. S... I haven't worked since 2004. I'm hoping issues will be able to heal so I can get back to working. I would really prefer to work helping MSers. Thinking maybe as an ultrasound tech. Wondering what types of skills, aside from having a medical degree, other jobs, would be needed to help in testing/treating CCSVI?
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