Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

[Cece]

Welcome, emholtzman26! Will you be able to attend the CCSVI patient day? Dr. Sclafani, who posts here, is the one who pulled this together as well as the two days for the doctors immediately following our patient day.

[cheerleader]

HAPPY THREE YEAR ANNIVERSARY TO THE CCSVI FORUM!!!

Let the peer-reviewed publication of research into the vascular connection to MS continue.
cheer

[JSTCD]

So now that we're three years out, were are we?

When I first joined, CCSVI seemed too good to be true, and I was waiting to see if time would clobber it. But seems to have stood the test of time. On the other hand, doesn't seem to be proven yet either.

So where are we? Is this "cold fusion" or "simple antibiotics can cure stomach ulcers" Is there any scientific consensus yet?

There seems to be a lot of negative reports still, but a zillion really cool videos.
What happened to the original pioneers from three years ago, did they stay better, or did it turn out to be placebo? Because surely you can't have placebo after three years.

[Cece]

Placebo is supposed to last six months at most, although there could be debate over that.
I'd say the scientific consensus is that, yes, CCSVI is more common in pwMS than in healthy controls. Beyond that, there is not a consensus on what it means that there is an association between MS and CCSVI. (Does one cause the other? Multifactorial? What effect does treating CCSVI have on MS?) But, compared to three years ago, there is a strong interest in CCSVI among the scientific community, in particular vascular researchers such as IRs. Just look at the conferences featuring discussion of CCSVI, and presentation of research on CCSVI. (ISNVD, SIR, ISET all coming up.)

There is research being done, although not the large-scale university research I'd like to see. Brave Dreams is Dr. Zamboni's large-scale RCT in Italy, but we need that duplicated here too.
Some of the pioneers are most definitely better, some are not.
It's not too good to be true.

[milesap]

see Canadian special on MS wars

[Lyon]

see Canadian special on MS wars

Awesome, thank you! We in the US were previously blocked from viewing it at the network site.

[milesap]

Bacterial infections weakens the veins the need for CCSVI may because of the CPn bacteria
http://www.cosmeticcentre.com.au/client ... 043332.pdf

[cheerleader]

This thread began as a discussion of CCSVI and Dr. Zamboni's studies. Since that time, Marie Rhodes has authored a book on CCSVI in MS. www.ccsvibook.com
She discusses cpn as a possible infection with vascular consequences of pages 43-45.
There are dozens of endothelial disrupters which can change the lining of the veins, and lead to more severe stenosis and slowed blood flow. These include metals such as mercury and cadmium, plastics, diesel fuel exhaust
food such as transfats and glucose
vitamin deficiencies such as D and B12
lack of exercise
cortisol and stress
viruses such as EBV
and a host of other environmental and infectious agents. There is not one cause of endothelial disfunction. For the full list and meaures that can help heal the endothelium, please see http://www.ccsvi.org/index.php/helping- ... ial-health

[cheerleader]

Five years for this thread---
Hundreds of papers have been published--Mostly negative findings, published in neurological journals, mostly positive findings/correlation published in vascular and phlebology journals. The debate continues.
http://ccsvi.org/index.php/component/se ... ask=search

The ISNVD has their fourth international meeting in San Francisco in February. Cerebral blood flow and cerebrospinal fluid are being studied in relationship to perfusion and brain health.
http://isnvdconference.org

on a personal level--Jeff continues to do really well, with no MS progression or relapses. His gray matter shows reversal of atrophy. He's back to skiing. Still mountain biking, hiking, working full days. His cerebral blood flow looks great. So, talk of placebo for him is negated. And I'm still trying to get more doctors to look at the connection of blood flow to diseases of neurodegeneration.
http://ccsvi.org/index.php/the-basics/c ... l-diseases

cheer

[vesta]

Hello cheer: Thanks for all your information. I think Jeff continued to take Copaxone after the venoplasty. Is he stll taking it, and for what reason? Thanks again, Vesta

[Cece]

Five years!
We need more fanfare and fireworks up here.
I am grateful forever for everyone here and for the information on CCSVI.

[Leonard]

I invite all to have a look at the abstract of this thesis:
http://www.mshackathon.nl/wp-content/up ... ressed.pdf
CCSVI is mentioned on the first page, causing hypoperfusion, low immunity, viral spread and eventually MS.

MS is a complicated multifactorial disease.
More info on the cascade of events can be found in the thesis or on http://www.thisisms.com/forum/general-d ... 8-750.html

On the question whether CCSVI causes MS, I can be affirmative.
I think it does.

To those who argue the reverse, i.e. that MS causes CCSVI, I would say the following:

I am convinced that CCSVI is an important contributing factor for the development of MS. But it is possibly not the only factor and there are loops where CCSVI results from ... the underlying mechanisms that cause MS. I think in particular of the Varicella Zoster virus.

In fact, I think for myself that has been the case. The right internal jugular vein was truncated in the lower neck (a picture as in text books), most likely a birth defect, genetically passed from my father's side. The left internal jugular vein developed as the dominant system because the right was almost closed from birth onwards. You have to understand how veins grow. Later on then, behind the left ear a stenosis developed which may have been caused by the virus. Its replication got a chance in the nasopharynx because the right side was insufficient or because of an otherwise weakened immunity.

[lazydean]

I am considering having a second procedure for my CCSVI. I went to Albany, NY 11/2010 to treat my CCSVI. Any thoughts on having the procedure again. I'M 75.
THANX

[ElliotB]

Did you have benefits from the original procedure? What is going on now?

[lazydean]

Yes, the procedure that I had in November 2010 in Albany, NY was quite good. Dr. Siskin ballooned my left jugular. It was 40% blocked & the right jugular was about 25% blocked...I knew immediately that I felt different. My right eye had a vision issue A black area (not black in color...) It slowly went away. My hands & feet were warm again. Biting my tongue/coughing spells were reduced to about 1 episode every other day. Vertigo was reduced to about every 2 or 3 weeks. Now biting my tongue/coughing spells have increased in frequency.....Vertigo occurs about once a week. Mechlazine tampers it down. My hands a usually cold. So I thought 9 years since my last treatment it is time for an ultrasound to verify problem areas. I read Denise Manley had 5 procedures.