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I keep watching for information on treatment of PPMS but I haven't seen reasons or speculations about WHY they often see less positive outcomes. Are the poor results associated with problems that are less treatable, or if a pwPP has jugular & azygous fixes do they STILL have little change?

As soon as I can I want to see what can be done, but if not now I think we're at least on the right track. Dr. Sclafani, was this discussed during the symposium?

I have a friend with the Marburg variant form of MS. He is very bad off and being taken care of by his family. He was diagnosed when I was in 2001 and 41 like me.

His neuro (head of the Neuro Science institute has pretty much given up on him.) He does no treatments other than glyconutrients that his parents give him.

Is there any information out there regarding CCSVI and Marburg. It is much more severe that PPMS. I see that CCSVI is not as common in PPMS. Why is that?

harpgirl wrote:
Is there any information out there regarding CCSVI and Marburg. It is much more severe that PPMS. I see that CCSVI is not as common in PPMS. Why is that?

And from Siduri

I keep watching for information on treatment of PPMS but I haven't seen reasons or speculations about WHY they often see less positive outcomes. Are the poor results associated with problems that are less treatable, or if a pwPP has jugular & azygous fixes do they STILL have little change?

Dr.S, I also wonder what the situation is with the progressive forms of MS. They must have CCSVI too. Is their CCSVI more severe? Or is their response to treatment not as good because because there is more myelin damage? Is it too soon on the learning curve to generalize about these cases in any way? Probably, but, maybe some patterns are being seen.

drsclafani wrote:

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?

I have seen a couple of mentions of this phenomenon, and it sounds so much like my own experience that I wanted to tell you about it. It was very short-lived. The last time it happened was when I was trying to get some leg function back that seemed to be fading. I was doing an exercise (with a trainer) where I tried to lift up my leg. I used a machine like a see-saw with nobody on the other side, and my job was to lift up, and let the other side down.

I had told the trainer about what I then called "moments of physical lucidity", where I would have an unexplained very temporary reversal of some deficit. On this one day, while dressing I had noticed it was easier to lift up my leg. When I arrived I started in to leg-lifts, and while the trainer was watching, I lifted my foot up nearly to my waist! They saw it, they saw me do it. It was gone later that day. I think these "moments" were only there to tell me that I still could do those things, if it were not for ...?? They are one reason I believe so firmly in Liberation. I don't think I've really lost all this. Something is "covering it up". I hope that something is lack of oxygen.

Dear Dr. Sclafani,

First I want to thank you so much for the symposium. I can't wait to see more videos and hopefully one day a written transcription.

Now my question, I saw an article referencing two "studies" of MS patients that claim to disprove Dr. Zamboni's findings of stenosis in MS patients.

However, from what I could determine in both articles, only MRIs were performed of the jugulars. No tests of the azygos were mentioned. Isn't this extremely bad science to claim to disprove CCSVI when MRIs are not the mode of testing that IRs use (i.e. no venography, no MRV, only an MRI)?

I'd like to know your opinion of these articles. Don't publications like these just set us all back and confuse the real issue which is stenosis is found using certain protocols for testing according to Zamboni and more refined techniques being discovered today?

http://online.wsj.com/article/SB1000142 ... 10380.html

http://www.medpagetoday.com/clinical-co ... osis/21493

I find this disturbing, as I can well see my doctors pointing to studies like this to justify not referring me for testing.

selkie

Drury wrote: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.

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


Drury

the stretch of the balloon is under pressure. a larger balloon is used to tear the valves and allow imiproved blood flow. it is possible to exceed the ability of the vein to stretch and then it might tear. usually this results in a self-limited perforation that seals quickly because the vein is under low pressure. I like the idea of expanding the angioplasty diameters before putting in stents.

Blaze wrote: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.

i cannot read the actual manuscript, but it seems like they are talking about cardiovascular disease in general , not venous disease. I would not think that this article does much to support or refute the ccsvi theory

LauraV wrote:

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?
Laura

i do not think that this meeting will impact at all on our IRB which suggested a randomized prospective trial, something I disagree with.

i t would rather not talk about things while they are so up in the air.

JohnJoseph wrote: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?

pressures generated are between 8 and 30 atmospheres. That is the equivalent of the pressure of the ocean on top of you 1000 feet under the surface. It is a lot of pressure. Fortunately it is contained within the balloon.

- 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?

actually we use devices that manually add pressure. it is done in a very controlled way.

- 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?

i was trying to get dr sanin to tell me what the nominal pressure of the balloon was or at least how much pressure he applied to search for webs in the AZV. I didnt get the answer i wanted. Knowing the type of balloon he uses, i suspect that there was moderate pressure applied.

- 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?

1about 15% of normal patients do not have a valve on autopsy. we would not likely be inflating a balloon in a vein with a valve we thought was normal. but tearing the valve away swould reduce outflow obstruction in most cases.

- 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 ?

to be honest, as i hope i will always be with you, i did not suspect that such abnormalities were common in the azygous. Sinan used the balloon as a diagnostic tool to "feel" around in the vein. the narrowings were impressive. It was one of the major points i took away from the meeting

And, how well do we know how a normal valve here should look like under the available phlebography technique?

JohnJoseph

joseph john, we never see the valves in normal patients like we see them in ccsvi

drbart wrote:How about using TEE for imaging the azygos?

Might require a sedative, but you don't have the issues of blood, thinning, hyper-sterility, or post-op treatment.

Bart
with tee (TRANSESOPHAGEAL ECHO), a large probe is place through the esophagus to look at structures in the chest near the esophagus.

i dont think it will show the vein over its entirely, has higher risk because of sedation and risk of perforation of the esophagus. I dont think i would explore its use.

sterility iis a good thing. infection is uncommon in vascular procedures where catheters are not left in long-term.

venography is relatively benign, does not require blood thinners or more than an hour of post procedural observation
the risk is higher

Cece wrote:The thread has been hot this week!

Michelle, I am watching your speech now, so far so amazing!

JohnJoseph wrote:Are there pneumatic driven, i.e. gas inflated ballons used as well?

Would this put us at risk for air embolisms, if it somehow escaped the catheter?

i hate to admit it, but air is introduced into veins every day. Not something that should be done, but it is.
clinically significant air embolism blocks the flow of blood into the arteries of the lungs. it requires a lot of air.

an air embolism that gets into the left heart (we are working in the right heart for ccsvi) can travel to the brain and cause a Transient ischemic atack or even stroke.

but relax, we do not use pneumatic inflation devices

Cece wrote:DrS, you mentioned satisfaction assessments, this is somewhat related.

Have you taken into consideration how MS cog-fog and other cognitive impairments will affect how we answer whatever questionaires or assessments you give us?

I found an article for you: Issues of consent and data collection in vulnerable populations.
Journal of Neuroscience Nursing August 2002

Maybe some useful ideas?

"Many questionnaires are constructed using a stem, followed by several adjectives. For example, "In the last week I felt ..." followed by as many as 50 items. In a new questionnaire (or an existing questionnaire that is intended for use with a cognitively impaired population), consider using a simple declarative sentence for each item. Those with cognitive impairment tend to have trouble remembering the stem, but can respond successfully to a short sentence."

"For those with MS, the timing of the consent or the collection of data may make a difference in ability to understand and process information as well as energy to complete the tasks."

<shortened url>

thanks cece, some light reading for my vacation in two weeks

A well derserved vacation!! I sent you my images awhile back and was wondering of you received them? I also sent you a PM.. if you get a chance.
Thank you.

Hi Dr. Sclafani,
this is a side view of my jugular veins. The right one(on the left side of the picture) is obviously narrower.What concern me is that there are 2 collateral veins that take over right after the jugular vein exit the bony ostium.
I think they are collaterals because they insert at 90 degrees to the main vein.
1: Do you agree that they are collaterals?
2: Is it safe to balloon collaterals considering they usually are smaller and more fragile veins? Have you seen a similar situation in the past?
Thanks again for your expert opinion.

drsclafani wrote:

LauraV wrote:

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?
Laura

i do not think that this meeting will impact at all on our IRB which suggested a randomized prospective trial, something I disagree with.

i t would rather not talk about things while they are so up in the air.

Look, I have an appointment later this month so I have no axe to grind, but by not being compliant are you not depriving the world of your operating skills? They want to treat poorer victims more fairly AND have an RCT. So offer a lower-cost procedure that has the randomness element in it, so that if people are willing to live with the randomness (which is really a 50% chance at a delay until the end of the trial) then they can get the lower price. Delay treating the placebo group until six months for the disabled, and one year for the non-disabled. You could simultaneously offer a higher-priced trial that has no placebo group.

My reasoning is that the IRB delays are getting to be worse than a six-month trial would be, in terms of wait time, and that some people are so badly off that they may die while waiting. I do not blame anyone for this. As I get older, time becomes far more important than money (being of sound mind, I spent it). To someone dying from CCSVI, money is fairly worthless. So charge more. It doesn't have to be an unreasonable barrier. Those who are dying often have advocates whose love will get them through another six months or whatever length you run it for.

But at some point, whatever powers that there be have to step up in defense of the disabled and dying. They just have to. Liberation is real. Why? Because we are all imprisoned by this disease. I don't know if you have ever been in jail, but I would trade that for this in an eyeblink. There is so much the world is missing, that all these sick people could give, if helped. I know you know all of this. But hopefully somebody who counts is listening. Be specific about what circumstances would cause you to unblind the trials, and stick to it like a leech. If that means some people get a bargain and don't have to wait so long to be unblinded, good for them.

Everyone agrees with the need for more information. But at some point it is much more likely and easily to be learned by doing. Is that too complex, or have I left something out?

These days the follow-up is getting to be as important as the treatment, and some people are falling through the cracks.