This Is MS Multiple Sclerosis Community: Knowledge & Support

[David1949]

Wow Cece, I think they are all singing from the same widely-distributed song sheet. Sounded like an instant replay of my latest appointment - some facts, nicely mixed up with untruths and opinion.

David - PML cases up to 77 as my neurologist pointed out.

Where am I? I want to hibernate. Wake me up in the Spring please.

PN

Is that 77 who contracted PML or who died from it?

[Cece]

It seems like good advice to send a letter, but I've thought it through and I don't want to even get into it with him at this time. It was frustrating enough, that feels like going back for more. I've got an appointment with him in two months, to do everything that was missed at this appointment. That will be after my procedure. I think the discussion will be calmer and honestly I know my stuff, if he wants to discuss it, I can hold my own. I don't see him as having to agree with CCSVI, but it is odd, us both having strong emotions about the topic in exactly opposite ways.

I remembered another of his points:
* ballooning for nonccsvi purposes is only ever done in one vein at a time, some of these vascular guys are doing multiple balloonings in multiple veins, that just isn't done or known to be safe

[marcstck]

Some high points from his ranting....

* Zivadinov is no longer behind this

Does anyone know if Cece's neuro is right about Zivadinov no longer supporting CCSVI? And if that in fact is the case, has Zivadinov explained why not?

that is news to me.

Cece - did he elaborate?

Actually, Zivadinov has said that, based on his research thus far (much of it presented at ECTRIMS), he believes that CCSVI is not the cause of MS, but is a possible comorbidity or effect of MS.

His latest research paper, soon to be released, found "No significant differences in the extracranial venous systems between MS patients and HC (healthy control) subjects". This is based on MR imaging, though, not venography.

Here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/21177394

[CureIous]

Some have been developing these quickie bullet points from the get go. Makes it easier to lob the softballs and get it over with. Plus it sounds very authoratative to the untrained ear. One can almost visualize the hand as it flaps through the air in a dismissive fashion. Sad. More people concerned about their careers than patients. I feel sorry for patients that get half the story most of the time. Regardless of source.

[erinc14]

I fired m y Neuro.

I mean why even bother going. They are criminals, they just are.

Makes me sick.

G

[1eye]

I have been known to make fun of some of the papers on auto-immunity that I have seen, while once I was on a Buffalo list. I think they are doing good work, and I meant no disrespect of Dr. Zivadinov, or I would not have put myself on their list.

I think he has done a good job of trying to stay neutral, but it can't last.

If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated.

Possibly the researchers who looked, did not see that because they of the way they looked. This kind of a statement needs reference. Another possibility is that their studies were not trying to demonstrate that. Without context or details I cannot say.

MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated.

I am not sure to what that refers, but I think X-ray venography and MRV are used in two different ways, and neither has proven "almost worthless". The work that Dr. Haacke has done has done a lot toward clarifying CCSVI, and at least one major clinic is including Dr. Haacke's testing as a key part of its protocol. What was the study looking at, where MRV proved "almost worthless"? (Praising with faint damnation?)

In fact, why *is* he saying "a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied"? If one assumed that the disability and duration were directly caused by specific types of abnormalities, and no others (which I don't), surely the number and quality of collateral veins and other physiological responses to insult would be more or less competent and more or less successful, and more or less timely, in different individuals? Genetics surely has a bearing.

[daniel]

Wow.... sounds like 90% of those points were repeated by my neuro as well. Do they all get their CCSVI talking points from the same source so that they can spit out misinformed factoids when it's brought up by patients??

[DrCumming]

Actually, Zivadinov has said that, based on his research thus far (much of it presented at ECTRIMS), he believes that CCSVI is not the cause of MS, but is a possible comorbidity or effect of MS.

His latest research paper, soon to be released, found "No significant differences in the extracranial venous systems between MS patients and HC (healthy control) subjects". This is based on MR imaging, though, not venography.

Here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/21177394

right, saw that. really not that helpful.

[MaggieMae]

Oh, just wait until we go back to my husband's neurologist for his next appointment. He will definately bring this up. He had told me last year that Dr. Zivadinov and his group were putting their careers and reputations on the line.

[Blaze]

Do they all get their CCSVI talking points from the same source so that they can spit out misinformed factoids when it's brought up by patients??

Yes.

[Cece]

Although it feels a little petty to continue adding these, I remembered another one!
* he said that Dr. Zamboni couldn't get his paper published in a real journal. It was in a "little" "vascular" journal.

To be fair, he did say that the risks were mostly with the stents and that angioplasty itself, while not without risk, was reasonably safe.

Now I wish I'd listened a little closer while he was talking about Zivadinov. He said that he knew Zivadinov or they were friends, something like that. Perhaps I should write that letter, asking for clarification on this point!

I haven't double-checked, when he said Amsterdam study, that was the Doepp study, right? Where he looked at the wrong kind of valve insufficiency and Zamboni wrote a response showing that the data actually supported CCSVI. The Beirut study would've been more interesting to discuss. But this is not going to be proven or disproven with any one study.

[fogdweller]

Sorry about your experience. I had a similar one when I was looking for a new neuro (I had moved) and mentioned CCSVI. He had never heard of it but then went on to tell me what a charletan idea it was, for no other reswon that it talked about MS patients improving!! His attitude was so clearly that "the proper state of patients with MS is hopeless and despondent and getting worse" and nothing should be taken seriously which challenges that. I was so furious that I couldn't sleep that night.

I when toa differnt neurologist, but had not seen him yet when I got back from my CCSVI treatment at Pacific Interventionalists. Imagine my surprise when he turned out to be interested, cautions but very curious, and complemented me on my courage to go and get treatment!!

Don'g give up. Look around and get a scientifically honest neuro. You might also write your old neuro with a detailed reputidation of his position with the true facts, and mention that the MS medical practicioners should be honestly and scientifically evaluating everything that may help find cures and treatments, since neurological medicine does not have an answer at this point.

Most neurologists are unaware that vascular origan of MS is not a new idea and the vascular connection was, early on, the leading suspect regarding this disease.

[marcstck]

I have been known to make fun of some of the papers on auto-immunity that I have seen, while once I was on a Buffalo list. I think they are doing good work, and I meant no disrespect of Dr. Zivadinov, or I would not have put myself on their list.

I think he has done a good job of trying to stay neutral, but it can't last.

If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated.

Possibly the researchers who looked, did not see that because they of the way they looked. This kind of a statement needs reference. Another possibility is that their studies were not trying to demonstrate that. Without context or details I cannot say.

MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated.

I am not sure to what that refers, but I think X-ray venography and MRV are used in two different ways, and neither has proven "almost worthless". The work that Dr. Haacke has done has done a lot toward clarifying CCSVI, and at least one major clinic is including Dr. Haacke's testing as a key part of its protocol. What was the study looking at, where MRV proved "almost worthless"? (Praising with faint damnation?)

In fact, why *is* he saying "a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied"? If one assumed that the disability and duration were directly caused by specific types of abnormalities, and no others (which I don't), surely the number and quality of collateral veins and other physiological responses to insult would be more or less competent and more or less successful, and more or less timely, in different individuals? Genetics surely has a bearing.

I suggest you go back to my original blog post at

http://www.wheelchairkamikaze.com/2010/ ... -info.html

All of the conclusions are based on abstracts of studies that Dr. Z presented at ECTRIMS. There are links provided to all of the abstracts.

The entire section of that post devoted to Zivadinov's presentations at ECTRIMS was presented to Dr. Z for his approval and to ensure accuracy before it was posted on my blog. All of the verbiage in the post regarding Dr. Z and his conclusions were okayed by the man himself.

[fernando]

Actually, Zivadinov has said that, based on his research thus far (much of it presented at ECTRIMS), he believes that CCSVI is not the cause of MS, but is a possible comorbidity or effect of MS.
His latest research paper, soon to be released, found "No significant differences in the extracranial venous systems between MS patients and HC (healthy control) subjects". This is based on MR imaging, though, not venography.

Here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/21177394

It is important to say that, IMHO, this paper found that MRV cannot discriminate very well between healthy subjects and ccsvi sufferers. Which is in line with previous papers by Zamboni and Dr. Sclafani experiences related on this forum.

The paper does not state that there is no difference in venous outflow between MSers and HS, per se.

Well, back to the main topic.

[pairOdime]

Here is what will be discussed at ISNVD's Meeting in March:

Ultrasound and MR imaging in treatment planning
The role of iron in MS and neurodegenerative disease
Perfusion deficits and hypoxia and possible relationships to CCSVI
New evidence of CCSVI in animal models
Related vascular problems: venous embriology, idiopathic intracranial hypertension, normotensive hydrocephalus, carotid surgery in stroke
CCSVI treatment: procedure and neurological outcomes
Genetic studies
Plethysmography
Flow dynamics: modeling the cerebral venous system

The neurologist I discussed CCSVI with said he was a neurologist and not a vascular doc. This requires a multi-disciplinary approach obviously...doctors will have to decide to work together for the benefit of the patient.