Angioplasty for MS: Patient-driven, safe but is it effective

Cece · Post by **Cece** » Fri Jul 01, 2011 7:24 am

Some thoughts on CCSVI from Dr. Gary Siskin of Albany Medical Center:

http://www.cardiovascularbusiness.com/i ... e&id=28535

“It really is the classic model of one person tells two friends, they tell two friends, and so on,” Siskin said in an interview. “There are a lot of anecdotal reports of success, that haven’t necessarily been published in the literature, but have been circulating among social networks online. Patients are hearing about this through their friends.”

Siskin said the MS community is paying close attention.

“They might not see each other in close proximity, but online, this is a very tight-knit community of patients. They share information regularly,” Siskin said. “When someone undergoes a procedure and they have an outcome that they consider successful, many of those patients will go online and tell patients who are suffering from the same illness about their experience.”

“There have been principally two reports that have focused exclusively on safety. Both of them have found a very low rate of significant problems,” Siskin said.

“The view of the neurology community is that this isn’t real until data demonstrates that there’s something to it,” he said. “Honestly, that’s a fair opinion.”

I disagree with that last bit.

MrSuccess · Post by **MrSuccess** » Fri Jul 01, 2011 7:34 am

I don't. What they are saying is ..... don't tell me ...... show me.

fair enough ...

Mr.Success

Cece · Post by **Cece** » Fri Jul 01, 2011 7:54 am

There is already some real data. Show me more, I can understand. Show me, means they haven't looked at what's currently there.

I am thinking of my own neurologist and his belief that the Amsterdam study disproved CCSVI, end of story. When that is but one of many studies. There is an association between CCSVI and MS and that means something. What it means, exactly, still needs some sussing, but the association itself can't be denied.

But I liked what Dr. Siskin had to say about us as a tight-knit group sharing information.

MrSuccess · Post by **MrSuccess** » Fri Jul 01, 2011 8:42 am

Cece - I did not say there was no data. I know ... as do you .... that there is Data ...... if Neuro's are willing to read it.

I suggest they research the BNAC data , as a start.

What Dr.Siskin is saying ...... is that the Neurology people want to read of specific and scientific quantifyable research data ........ before they support the CCSVI to MS connection .

Remember this : Neurologist's do not perform any surgical procedures ... even though they are doctors .... they are .... for want of a better description ....... " text book " doctors .

Thus ..... they base their opinions and evaluations on the reports of those that can perform surgical procedures ...... and eventually publish their results .

The good news of course ....... there are health professionals that have and are doing the CCSVI vein correction procedure .

Things are moving slowly forward . Agonizingly slow.

Mr.Success

[ sorry Pam .... my spell check is on the fritz

]

PointsNorth · Post by **PointsNorth** » Fri Jul 01, 2011 9:09 am

Neuros have demonstrated to me that they are simply cherry pickers who only site the findings of . . . other neurologists rather than vascular peeps whose findings mean as much or probably more than theirs. Suddenly they are the lone arbiters of CCSVI. They are masters of the straw man . . . design a trial which disproves CCSVI. Hell, I can do that.

Cece · Post by **Cece** » Fri Jul 01, 2011 9:39 am

MrSuccess wrote:Cece - I did not say there was no data. I know ... as do you .... that there is Data ...... if Neuro's are willing to read it.

yes, it was the quote from Dr. Siskin (that the neurologists didn't see it as real until there was data), that I was thinking of. We know there's data and I know of one neuro (mine) who hasn't read it!

There are some specialties where they get instant feedback based on their interventions with a patient. MS specialists do not get that instant feedback, to their detriment, I think.

1eye · Post by **1eye** » Fri Jul 01, 2011 9:57 am

We have to remember what these guys are trained to and used to. They are used to people getting worse and dying. They are trained to do neuro exams and write prescriptions and the odd referral. They are not used to reading about or seeing people getting better. They are not used to sending people somewhere they can get any help. If they are smart enough, they will soon get used to it. One can hope anyway.

MrSuccess · Post by **MrSuccess** » Fri Jul 01, 2011 12:46 pm

Neurologist's are 100 % dependant on the data collected by other health professionals ........ including those that perform autopsy's.

That is how MS was entered into their medical texts .

We now are in a new world . MRI's. .....IVUS ..... Catscan's

.....

Doppler radar ....... [ that neck flow device.... I'm too lazy to research the name .... ] Extensive blood tests ....... vast improvements in optic equipment ..... fMRI ....... and on and on .........

Wow ........ how can we keep track ?

But most of all ............ and maybe the greatest .....is the INTERNET.

Doctor to Doctor ......... Patient to Patient ........ instantly sharing information .......... across ocean's and continents ...........

Everyday ..... we all learn more .

This seems to disturb the Old Schoolers .

I say ........ tough shit.

Mr.Success

Cece · Post by **Cece** » Fri Jul 01, 2011 1:00 pm

Plethysmography. Rolls right off the tongue!

We are, as we often are, in agreement, MrSuccess.

Thank goodness for the internet and for TIMS. I would not have known about CCSVI if not for everyone here.

NZer1 · Post by **NZer1** » Fri Jul 01, 2011 2:48 pm

I like where this is going.
The bottom line as a person with a vested interest is that there is information coming out that we as interested parties can help assemble in a fashion that progresses this understanding.
There is information, research, studies and the like that show that endothelial dysfunction is the area needing the most research and quickly.
Joan and Marie have moved mountains on this so far.
There is now a picture forming where diet can alter the course of 'MS'
There are outcomes that show that angio treatment is altering the course of 'MS'.
There is now links between trauma and spine alignment and 'MS'.
There is solid evidence that breaches of the BBB are involved in 'MS'.
There is mounting evidence that there are other links that alter the likely hood of people developing 'MS' although they do not cause 'MS', such as latitude, ancestry, smoking, stress and others factors that are prevalent in PwMS.

My point is that there is one common denominator that needs the most attention. A point that repeatedly is implicated in the findings so far. A point that we seem to be walking around and not seeing. Or a point that hasn't been languaged in a way that has gotten collective attention. Many people are so focused on their specialty or point of focus that it is going under the radar.

Treatments like angio and chiropractic are changing the flow, diet is changing the content of the flow, exercise is changing the pumping of the flow, DMDs/Crabs drugs are modifying the effect of leakage from the flow.

All these things come back to one area that is needing intense investigation the endothelial function and dysfunction. We are able to witness the failing of the endothelial lining, what we need is to focus on is the process and identify what is causing the outcomes we are seeing e.g de-generative diseases.
Happy pondering,
Nigel

MrSuccess · Post by **MrSuccess** » Fri Jul 01, 2011 3:18 pm

thanks for finding - Plethysmography - .... there's a mouthful !

all in all ...... CCSVI has some wonderful tools to help with diagnosis .....

Over the years ........ Mr.Success has read about all of the great medical advancements mankind has made. And thought how great it must have been to be eyewitness to these discoveries. Penicillin. Insulin...........

Mr. Success remembers well the great work and discovery of the human heart transplant . It shook the world. This story is well worth reading .

And now ..... Mr.Success believes that Professor Zamboni has brought to the world ....... the second medical marvel ....... in my lifetime.

I also give dear Dr. Schelling ....... credit .

Most exciting of all ......... is the notion that one discovery could lead to solutions in other areas . I have read suggestions of this. Wow.

Neurologists . These people have taken on the study of the most complex organ in the body. And to do this ..... one must possess a brillant mind ... I give you ...... Dr.Hubbard .....Dr.Silvi ...... Dr.Zivadinov .......Dr. Bianca-Weinstock-Guttman ......... even .....

Dr.Freedman

Like I have said before ......... I hate a yes-man ........ they are dangerous ........ so I accept those medical professionals that cautionsiously give their opinions ........ like Dr. Jock ........

Mr. Success

....... and thanks for the compliment Cece ...... I can live for 30 day's on one of yours ...... as I ..... as many do ........ value your words .

MrSuccess · Post by **MrSuccess** » Fri Jul 01, 2011 3:28 pm

great post Nigel ..... well said .

what we might be looking at is a situation like this :

two community's have a common border ..... a bad guy [ ms ] freely works the boundary between the two ..... while the police in each community argue over who should be arresting them and how ! So nobody does.

That's nuts.

Mr.Success

se1956 · Post by **se1956** » Fri Jul 01, 2011 11:54 pm

It's not only hearsay:

http://www.ccsvi-tracking.com/index.php

This database contains to some degree hard facts.

R.

Cece · Post by **Cece** » Sat Jul 02, 2011 8:16 pm

Here's another article. Neurologists!! http://www.montrealgazette.com/health/Q ... story.html

There's been little improvement seen in MS patients who flocked abroad to private clinics for the angioplasty surgery, and most suffered new obstructions and returned twice, even five times, said Marc Girard, head of the Quebec Association of Neurologists.

"The results are not there," Girard said. "One year later, we have more questions than answers."

But we have seen lots of patients who were treated and who returned because of blocked veins. Those people you don't see on TV," Girard said. "We saw 40 patients who had it and we didn't see miraculous results."

Some patients had little improvement while others reported that benefits vanished within two weeks to three months, he added.

My neuro, who may need replacing, went on and on about how some patients experienced improvements but that none of the improvements lasted longer than two months. (I think it was two months. Could've been an ever-so-slightly more generous three months.) He was so bloody certain about things that he has no reason to be certain of.

I do not believe it is true that most MS patients suffer new obstructions. (What does that mean, new obstructions? Restenosis, yes, but CCSVI obstructions don't pop up again in different places.) Our IRs are working at adjusting the treatment techniques, to get the most durability with the least intimal damage.

MrSuccess · Post by **MrSuccess** » Sat Jul 02, 2011 9:55 pm

sure strikes me as suspicious .... all these Neurologist's reporting no end of negitive outcomes for patients who have had CCSVI treatment ......

And how do they know this ? Coffee shop or fireside chats ?

Try as I may ......... I am running out of patience with some Neurologist's. They are bordering on " contempt" in their attempts to keep their customers .........

CCSVI allows pwMS the chance to shop across the street [ IR's ] ...... and this loss of income ....... is obviously getting under their skin.

Mr.Success