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Hi

PA's have always done my testing as well but in the MS clinic and then the neuro confirms their results. From my experience in Canada with the neuro's it's an uphill battle (kind of like a clash of the titans) for them to change their mind set.

I agree that it would be better to have local patients, consistency of testing would be as important as the consistency of the procedure. What I find most frustrating is the demand that a surgical (I'm not sure of the exact way to phrase this) procedure be held to the same standard as a drug trial and with the same outcomes before it can be accepted.

There are so many factors involved it is a little daunting.

DrSnyder wrote:Dr. Sullivan presented a talk on the management of immature venous fistulas for dialysis work. He demonstrated how they were treated at his clinic to promote maturity, but ultimately concluded that the differences between arterialized flow in a vein and regular venous flow may make it difficult to extrapolate techniques from this model into CCSVI treatments.

This is because the high speed flow of an arterialized vein keeps it from clotting? (Clotting seems to have been the issue with the attempted treatment of hypoplasia in CCSVI.) Or is it more complex than that?

Was it generally agreed to leave hypoplasias alone?

Just had to chime in here to defend current work outside Buffalo. Dr. Haacke gave a fascinating talk at the Patient Day. He showed slides with some very hard data he is collecting, with new data points each in less than a second from the last, on flow volumes and oxygen content. He may not be very audible in the video because he walked away from the podium microphone to describe the slides. I have recently read here that these measurements are not reliable, but you can't make that kind of a smooth line if the data jumps around.

These are before and after angioplasty measurements showing its effect on parameters which can definitely be said to be part of MS pathology. The effects of angioplasty on chronically low oxygen levels might seem to TiMS regulars to be an expected result, but remember others have been saying no angioplasty is necessary, and that insufficiency doesn't exist. Now the necessity and the existence has been quantified and charted on numerous subjects.

I just had a 50 minute appointment with my neurologist (someone very well known here). It was basically a debate with my view as pro CCSVI treatment and his obviously the opposite.

We parted amicably agreeing to differ. I said how interesting it would be to meet up again 10 years from now and see how this plays out. He will be retired by then though.

To get to my point - he was unhappy that he had never received a report post angioplasty from any Interventional Radiologist. Now I almost laughed and said something about not being referred by our neurologists and so that was why the GP got the report. However what I sensed was that he genuinely thought he should be receiving these reports. I may say he has mine as I gave it to him.

Maybe we, the patients, can make sure we give these to our neurologists and prehaps help this relationship which obviously has to start to flourish between the two disciplines for us to move forward.

This is a great thread, thank you Dr. Snyder.

MrSuccess wrote:Dr. Snyder ... thanks for the information . You may find it helpful to read Dr.Sclafani's initial description of Dr. Zivadov ..... at the founding meeting of [ can't remember the name ] at his house . All the Who's Who of CCSVI were there. Dr.Sclafani described Dr. Zivadov ... as gruff.

Okay .... so the guy's not a teddy bear ...

I very much respect and admire Dr.Zivadov ..... and understand his point ..... that the CCSVI treatment MUST show measureable improvements ....... lesion load ..... grey matter loss ..... and so on ....

BUT .

Quality of life ........[ How do you measure that ? ]........ is also important.

I don't see how you can argue with the outcome of a person that is of the opinion that they seem to be better ..... post CCSVI treatment ?

And I have a question : Are male veins larger and longer than female veins ? Could you evaluate the difference in a blinded study ?




Thanks


Mr.Success

let me make my opinion about dr zivadinov know publicly.

Robert Zivadnov is a giant in CCSVI who had taken the agenda forward in the most scholarly way. He has searched and researched as long as i know him for the simple reason of finding out the truth and sharing it with the community. He is passionate and he is human and he can be gruff. But i find him to be someone I admire greatly and whom I am pleased to call a colleague and friend.

an while i am at it, i wanted to share with you some of the passion for ccsvithat montel williams showed to me. He is a mighty advocate and a generous person.

All the stuff i have heard about self-serving, just did not bear out on the meeting with the man.

drsclafani wrote: let me make my opinion about dr zivadinov know publicly.

Robert Zivadnov is a giant in CCSVI who had taken the agenda forward in the most scholarly way. He has searched and researched as long as i know him for the simple reason of finding out the truth and sharing it with the community. He is passionate and he is human and he can be gruff. But i find him to be someone I admire greatly and whom I am pleased to call a colleague and friend.

an while i am at it, i wanted to share with you some of the passion for ccsvithat montel williams showed to me. He is a mighty advocate and a generous person.

All the stuff i have heard about self-serving, just did not bear out on the meeting with the man.

Thanks for sharing this info Dr.

drsclafani wrote:an while i am at it, i wanted to share with you some of the passion for ccsvithat montel williams showed to me. He is a mighty advocate and a generous person.

All the stuff i have heard about self-serving, just did not bear out on the meeting with the man.

I am excited to hear this about Montel. Since he announced his procedure, I've been active on his Facebook page. When fall comes, there will be a very large number of people who learn about CCSVI first from Montel on Dr. Oz. And I want everyone to learn about CCSVI. To hear that he has passion for CCSVI the way we do is very, very good.

DrSnyder wrote:I am going to work on my notes and post a final summary tomorrow with answers to the questions that I was asked.  I hope someone found this useful.

Better hurry or I might keep asking more questions...

Seriously this has been a great report on the symposium. I think I have said, "Welcome to TIMS," but let me say it again in case I missed. And a thank you to that patient of yours for suggesting you do this.

Summary of the Second Annual CCSVI meeting
(from my perspective)

To sort of organize my thoughts I will proceed chronologically. 
First of all, it was very interesting to be at this meeting.  I had attended Dr. Hubbard's meeting this spring and it was nice to see him and his lovely wife again.  

I did miss the patient day due to work issues, but i understand that that went off well and that the patients who came felt it was valuable.  

So, from a radiologist's  perspective, all of the "rock stars" in the field were present with the exception of Dr. Zamboni ( which was unfortunate but we all wish him a speedy recovery).   I wouldn't call this meeting a "love-fest" both the people present were for the most part already doing the procedure, or planning on doing the procedure.  By and large, the sense from most everyone present that I could glen was that CCSVI is associated in some fashion with MS ( weather causative to concomitant or as a result of the disease) but that the overlap needs better definition.  The most controversial part of the  conference seemed to be Dr. Zivadinov's call to make sure that our studies address an outcome that is focused on reducing or treating MS like a new drug would, with similar types of primary endpoints.  

Dr. Sclafani made the point upfront that he doesn't treat MS, he treat CCSVI in the hope that it reduces MS symptoms.

Beggs presented a very good series of talks that simplified the fluid dyanamics in CCSVI essentially arguing that what goes in, must come out. He postulated that narrowing at the final outflow of the jugular veins MUST cause some dilation of the parenchymal veins and that the compensator for a block or reduction in jugular outflow had to be chronic dilation of the parenchymal veins or increased reliance on CSF mechanisms to maintain the outflow. He correlated this to perfusion where essentially more stenosis = less brain perfusion.  when increase blood volume is in the cranium, brain tissue must be getting compressed. 

This got me to thinking about CSF flow and if a study correlating ventricle size and aquiduct size might have some relevance in diagnosing or predicting who might get MS (I.e. If you have a small aqueduct, maybe you can't compensate for venous stenosis and your MS risk of exacerbation of symptoms  might go up?).  If we follow the reasoning of Dr. Beggs it would seem that relieving CSF pressure would provide some more reserve for venous stasis, so would a Ventriculo-Peritoneal shunt reduce exacerbations of symptoms by relieving pressure? Didn't get to ask that question. 

Dr. Salvi's presentations on hydrocephalus and neurodegenerative disease and clinical presentations of CCSVI were interesting in the fact that there seems to be some parallels with normopressure hydrocephalus (NPH) and MS type symptoms which would fit in with what Dr. Beggs was talking about.

I found the attempt at correlating MS with other venous symptoms not fully presented.  Dr. Salvi showed a picture of someone with sever edema in the lower extremities that looked just like venous stasis and claimed that they had a complete reduction in the LEG swelling after jugular treatments for CCSVI.  This seems hard to explain and I would have liked to see any data to support this.  

Ms. Marr presented a quick overview of ultrasound imaging.  Nothing earth shattering, just how to do an ultrasound.  

A few points that I did find useful, keep the head in a neutral position. I know from experience that most monographers I have seen will have the patient turn their head opposite the side being scanned to open up the vein.  Ms. Marr suggested that turning the neck would alter the flow and confound the results. 
Also interesting was her call to use warm gel.  The claim is that cold or room temperature gelling can cause jugular venous spasm.  No sure if this is true or not, but warm gel does seem more courteous.  I will switch to ensure this immediately.
Other recommendations that she had:

Drink 16 Oz of water within the 2 h of exam to ensure proper hydration and thus the veins will be enlarged.
No steroids within 30 days of the exam.
No air travel during the previous 24 h before the exam. Contending that it takes the body 24 hours to reset to baseline after flying ( would like to see the data to support this).  

Dr. McDonald did a nice literature review and kept pointing out the folks before us that thought MS was strictly venous flow related. There was some discussion about how and when to follow patients that live close enough to be followed.

Diane Driscoll ( doctor of optometry) gave a very interesting introduction into the role of MAST cells and the immune system, essentially stating ( if I understood it correctly) that mast cells hang out in the choroid plexus - glands that make CSF. When they go into circulation for whichever reason activated them, they can exacerbate MS symptoms.  She discussed treatments with acetazolamide which had apparently shown some promise.  This looks like another area ripe for research. I wish I was smarter.

End Day 1

Day 2 

I think I did a pretty good job of summarizing this as it was occurring.
Highlights included being admonished by Dr. Zivadinov and the basic discussion about weather it is premature to proceed with randomized studies.  The point to do it is to try to establish if dilating veins does any good at all.  The point that it was too soon revolved around us not having enough experience to even have a consensus on what should be dilated and by how much.  Until we know how we are going to treat, it is too soon to do the randomized stuff.  Specifically, what protocol do you use on the treatment arm? What do you treat and how much - how large? Remember, if this part is flawed and the vessels go undertreated, then the results from the "First randomized study" will show that dilating the jugular veins is not useful at all - when it simply might be that they didn't dilate enough, etc.  Zivadinov is a smart guy who is on the ball, so I am sure that this part will be addressed, but that is essentially the arguments in the pro and con camps. 

The disclosure part was a bit preachy.  I can tell you that every doctor there already knew what it meant to be be involved with CCSVI.  After telling folks about CCSVI in my own facility I can tell you how verbally aggressive some of the nay-Sayers can be.  The only neurologist I could find to work with me on these folks is outside the hospital system. Good for us he is an excellent Doctor.  I sent my own father in law to see him ( and I LIKE my father in law too).  Dr. Zivadinov did have a point that some folks were now basing a carreer on CCSVI treatments, but disclosures in this setting don't really pertain to that as I understand it.

I do agree at some point the CCSVI data will have to address the overall treatment of MS like reduced placque burdens, etc.  

The work in Poland and Bulgaria has been prolific and useful. Dr.s Simka and Petrov have done alot of work oversea and have been ahead of the treatment curve so to speak.  It was interesting to see the significant reduction in the amount of stenting that went on as experience increased. At this point it seems stenting is only used for severe lesions that do not respond at all to plasty, or as a bailout for vessel wall repair.  

We got a glimps of the Hubbard data from Dr. Ponec which uses the MSIS-29 data.  It was very favorable and exciting to see.

We got a look at the study design for the PREMISe study by Dr. Zivadinov

We got a look at the Albany study design by Dr. Siskin

Of note - rapid clearing of contrast from the jugular veins seemed to hold some importance for diagnostic purposes from the presenting Doctors.  It seemed like clearing of contrast in less than three seconds was important to show lack of stenosis.  The volume of contrast and rate of injection was not discussed in this.  Also, no one discussed using pull back pressures where pressures are measured across a narrowing as a way to determine significance. I have done that on all of my patients trying to reduce the gradient to 1mmhg which is within the margin of error for the electronic sphygmomanometer. Anything greater that 2mmHg Medes to be treated in my opinion.  It will be interesting to see if future studies include this data.  

All in all it was a very interesting conference and I am glad that I attended and know that it has furthered my own resolve to be active in this fascinating and underserved corner of medicine. 


Stuff to follow -up on:
Question correlation between heart disease, infective mononucleosis, irritable bowel or crohns and increased risk of CCSVI.  Use of Ginko Biloba may reduce Symptoms?

Investigate: does placement of IJ catheters in MS patients increase MS symptoms?


Articles to pull and review:
Kitano et al, journal of nuclear medicine 1964
Doepps, et al. Meir radiology 2004
Centonez -Ann neurologist 2011
Www.ms-MRI.com

This got me to thinking about CSF flow and if a study correlating ventricle size and aquiduct size might have some relevance in diagnosing or predicting who might get MS (I.e. If you have a small aqueduct, maybe you can't compensate for venous stenosis and your MS risk of exacerbation of symptoms might go up?). If we follow the reasoning of Dr. Beggs it would seem that relieving CSF pressure would provide some more reserve for venous stasis, so would a Ventriculo-Peritoneal shunt reduce exacerbations of symptoms by relieving pressure? Didn't get to ask that question.

1eye, is this the same as what you've been suggesting, similar to what your brother had?

I never understood it from the CSF angle before.

CeCe wrote:
Q: When you asked about doppler angle, do you mean what angle it is held at?
A: Yes – I believe that some of the images that Ms. Marr showed in her talk were of the vein in transverse – which would mean that you couldn’t actually get a meaningful waveform pattern. I asked her about this during question time and she didn’t understand what I was asking.

To get a useful waveform, the vessel needs to be imagined in longitudinal axis (like along the long axis of a straw) and the ‘steer angle’ or angle in which you can electronically set the probe as the point of where it will ‘listen’ to the vein needs to be less than 60 degrees per the physics behind ultrasound. This comes from the Snell equation that we use in ultrasound. If the angle between the skin and the point of imaging is greater than 60 degrees, we can get abnormally increased velocities. This is crucial in carotid artery imaging where we use the actual numbers to determine if someone has a stenosis. This is probably less critical on the venous side, but still the “Quality” of the waveform is important, and should show the normal crests that indicate pulsatility transmitted from the heart and the undulating sin wave pattern that is respiratory phasicity.

Q: Are you doing Zamboni protocol dopplers? Are you doing them or a tech?
A: Yes we have attempted to do the Zamboni protocol on three of our patients. It is a difficult exam if performed the way he did. I have done some of the scanning but frankly, the technologists who do this professionally are so much better at it, that it works out best for everyone if I am in the room, but they drive the probe.

Q: I like the picture! Do you know how to scale it down a bit?
A: Man! I am trying. I have gotten into the profile page but it says avatar assignment is “currently disabled”. I will work on fixing that. It is embarrassing…

Q: ABOUT IVUS: Dr. Sclafani showed his IVUS work. I had stated this does seem to show quite a bit of information about the valves that may be difficult to get in another fashion. Some discussion about cross sectional areas and ultrasound viewed pathology. Cece asked: Did the other IRs in the audience seem to share this view?

A: I don’t think anyone was or would be against IVUS, but it does add cost and time to the procedure. I do think you can make an excellent argument right now that it should be done as we acquire data. The “stuck valve” and “webs” that he was commenting on are often times difficult to see on the little cine loops that get put on powerpoint for these talks, but I have seen enough of them in practice to know what he was showing. We use IVUS in our practice mostly to get a look at renal arteries before stenting or to know where to punch holes (fenestrate) an aortic dissection to allow flow back into the true lumen. I have deployed a few IVC filters with IVUS as well – nice bed side tool when real time xray isn’t possible.
I will begin using it on any MS patients that we treat to document cross sectional area before and after treatment.

CeCe writes: Q: Since veins are oval shaped, and you will get a different measurement if you are looking at them straight-on or from a different angle. So some precision is lost if measuring through flouroscopy as compared to IVUS and one question is how important is that precision? How vulnerable are these veins to damage, if the balloon is oversized? Or to undertreatment, if undersized.

A: Cece – yes, definitely a good point about getting an absolute size. Keep in mind, though that the actual size of the vein will change immensely during the phases of breathing or breath holding for that matter. Theoretically, a fixed lesion or stenosis shouldn’t change in size, but these (when to measure) issues still need to be agreed upon. In regards to precision, yes, most everyone there when asked stated that they would oversize by about 20%. That is not uncommon for IR docs. We use that for some of the other lesions that we treat, although most of us will be pretty careful not to dilate the “normal” parts of an artery or vein to larger than it’s regular size if that can be avoided.

Q: I am interested in your impression of the mood at the symposium. Is there the same excitement for CCSVI that we have here? Is there a sense of how soon this may move into the mainstream as a standard care treatment?
A: Yes definitely there was excitement at the meeting. As I stated in one of my posts, it seemed that everyone present was on board with the concept and treatment agenda of CCSVI, but were looking for more data to bring back to their communities and some guidelines on HOW to treat. Dr. Zivadinov’s point about mainstream was that if we can’t get neurologists in the fold, we won’t be successful. Most of the IR docs are still at a point where they cannot get IRB approvals in their own hospitals. I personally think mainstream is still a ways off.

Marc wrote: Dr. Ponec also related his outcome data during the patient information day, but I wonder how strong the actual statistics are, given that it's all patient reported data, which, I believe, is known to skew towards the positive. Patients with negative outcomes are less likely to report. Indeed, I asked him about this during his Q&A, and he agreed that this could be problematic. At the six month point, a full 40% of his treated patients did not respond to the surveys, which could indicate that these nonresponders would have reported lesser efficacy. Then again, one never knows, do one (to quote Fats Waller)…
A: Yes Marc – definitely problematic. The argument would be that the MSIS-29 is a ‘validated’ exam so that could minimize some of those issues, but yes, this does remain of great concern for the data. Again, this goes back to Zivadinov’s point that we need to have something objective like reduction in lesions or significant improvement on the EDSS, etc. Patient surveys alone are nice, but not enough.

Cece wrote: It was the MSIS, wasn't it?
A: Yes –Cece – I miswrote it as Misi – it is INDEED the MSIS – Multiple Sclerosis Impact Scale.

Cece wrote: about Warm Ultrasound gel…This doesn't sound like it is just for comfort...what difference does the warmth of the gel make?
A: According to Ms. Marr – cold or room temperature gel can cause the jugular vein to constrict. I don’t know if this is true or not, but it is her observation and warm gel is just an awful lot more friendly.

Q: Three neurologists...Dr. Hubbard and Dr. Zivadinov and Dr. Salvi?
A: Yes- I think that was it.

Pklittle wrote: I have always wondered too why physical outcomes were not tracked… It seems to me that gathering these measurable facts pre and post, along with the subjective ones ("how depressed are you on a scale 1-10", etc)…would clarify just how effective or not ccsvi treatment is.
A: Yes – agreed. Improvement on the EDSS was discussed as being meaningful, but you are absolutely right. Our current problem remains finding Neurologists who are trained in these exams who will engage in this research. MUNCHKIN made this point as well in the response.

Q: Cece questioned the presentation by Dr. Sullivan on immature fistulas. I had commented “Dr. Sullivan ultimately concluded that the differences between arterialized flow in a vein and regular venous flow may make it difficult to extrapolate techniques from this (treating an immature fistula) model into CCSVI treatments. Cece asked: Is this because the high speed flow of an arterialized vein keeps it from clotting? (Clotting seems to have been the issue with the attempted treatment of hypoplasia in CCSVI.) Or is it more complex than that?
A: Yes, it is definitely because the high speed / high pressure in the arterialized vein keeps it from clotting. These do tend to go to stenosis at some point up stream as the vein cannot handle the new arterial pressure for a long time before it starts to narrow.

Was it generally agreed to leave hypoplasias alone? – That wasn’t addressed in his talk.

Mr.Success wrote (among other things addressed directly by Dr. Sclafani): Are male veins larger and longer than female veins ? Could you evaluate the difference in a blinded study?
A: Great question! The easy answer is, definitely Yes. Male veins are going to be larger than female veins. They would have to be, based on the relative sizes of men and women in large groups. Obviously that breaks down on an individual subject by subject level (the 6 foot woman vs the 5 foot man). We do have some data for the arterial sizes of things (Aorta / Common iliac arteries) where we know men are a few millimetes larger than women. Could we tell them apart in a blinded study. No, I really doubt it, except to say call the really big one men, and the really little ones women and guess on all the rest. I predict a 50% sensitivity and a 50% specificity on that research!

Finally!
Cece wrote: Seriously this has been a great report on the symposium. I think I have said, "Welcome to TIMS," but let me say it again in case I missed. And a thank you to that patient of yours for suggesting you do this.Indeed my pleasure! I have a great deal of respect for all of the doctors that I met this weekend ond for the Hubbards that I re-met. I live in a state (MN) with a very high prevalence of MS. Affected are my favorite Aunt, My two cousins, my father in law, my best friends sister (died at 38 from MS related issues – really sick for a long time beginning just after completing her MD degree), My best friends older brother (He’s MY friend too!) and a ton of other people that I know and see everyday. In fact, it seems like you can ask anyone here. “Do you have MS?” and if they say no, they will say, “But my (fill in the blank) does.” . Essentially, MS has danced in and around everyone I know and love. There by the grace of god go I. If I can do anything to help move this treatment forward, I am in in IN!

And again, I DO apologize for the picture. I knew I should have ordered wallet size instead of portrait size. I Will figure out how to get that fixed.

Best personal regards and a public thank you to Dr. Sclafani, et al.
Greg

Thanks for the follow up, Dr. Snyder. Glad to hear that Dr. Salvi is continuing the NPH connection. Dr. Eliot Frohman discussed normal pressure hydrocephalus at the first CCSVI symposium in Bologna in 2009. This is from my notes from Bologna-

Dr. Eliot Frohman, professor of neurology at Southwestern University- was a moderator and participant in the CCSVI convocation. He consistently had cogent and insightful questions and comments during the day. One of his points has stayed with me, and prompted me to do some more research on cerebrospinal fluid. Dr. Frohman commented that CCSVI was reminding him of his shunting treatment of normal pressure hydrocephalus ...mainly in the fact that the third ventricle was being enlarged in both MS and NPH- Here's his comment-
Quote:
I have seen this happen in “normal pressure hydrocephalus- (NPH) Where there is a loss of gait, cognitive and bladder issues and the lesions disappear because the expanded ventricle swallows the lesion. I have shunted the brains of NPH patients, and they showed remarkable improvements. Again, the enlargement of the third ventricle precedes the changes.

here's the thread with more discussion from '09-
http://www.thisisms.com/ftopic-11956-next.html
cheer

DrSnyder wrote:CeCe wrote:
Q: When you asked about doppler angle, do you mean what angle it is held at?
A: Yes – I believe that some of the images that Ms. Marr showed in her talk were of the vein in transverse – which would mean that you couldn’t actually get a meaningful waveform pattern. I asked her about this during question time and she didn’t understand what I was asking.

To get a useful waveform, the vessel needs to be imagined in longitudinal axis (like along the long axis of a straw) and the ‘steer angle’ or angle in which you can electronically set the probe as the point of where it will ‘listen’ to the vein needs to be less than 60 degrees per the physics behind ultrasound. This comes from the Snell equation that we use in ultrasound. If the angle between the skin and the point of imaging is greater than 60 degrees, we can get abnormally increased velocities. This is crucial in carotid artery imaging where we use the actual numbers to determine if someone has a stenosis. This is probably less critical on the venous side, but still the “Quality” of the waveform is important, and should show the normal crests that indicate pulsatility transmitted from the heart and the undulating sin wave pattern that is respiratory phasicity.

Lanie from CCSVI Atlanta has shared her knowledge with us from time to time. She is the ultrasound technician there. If she happens to see this, perhaps she be able to address this.

Dr. Snyder---Thanks so very much for all the updates. It's been great to have you report back on so many issues. Glad you're on board & so willing to help us all fight this as it is such a battle. Thanks again!