This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Roger , I can see no reason at all to be discouraged by the pace of CCSVI treatment and acceptance. The gate is open , and the CCSVI horses are out and running .

Good Luck to Big Pharma in rounding up all the strays .........

Please read this carefully : To benefit from CCSVI ... you must do one of two things ........

[1] Stay up to date on all things CCSVI. If you came late to the party ..... you have a lot
of homework to read and understand.

[2] Follow the CCSVI posts of a select few TIMS members. They not only bring an amazing
amount of CCSVI information ..... they have actually walked-the-walk ... and have
first hand CCSVI experience. And they have met the incredible medical professionals
involved in this medical pioneering journey.


I salute them all .... with my evening cocktail ..... firm in hand.



MrSuccess

The intraluminal abnormalities may possibly found in people with high levels of endothelin or VEGF circulating in their blood. This can be caused by either hypertension or chronic inflammation. The effects have been studied for a long time. The endothelin and VEGF can cause stenosis, vascular remodeling, monocyte infiltration, restenosis, and lead to further inflammation. Those results are consistent with a retrovirus infection, chronic hypertention, and autoimmune disease. The biomarkers are associated, but not dependent, on shear stress.

That is one direction for research. Another is whether treatment for veins that have been self-contorted to maintain constant pressure should be "liberated" or left alone. They may just be a result of inflammation and are consequential. Then treatment might help without upsetting the cbf???

Too many questions.

I should add any other cause of MS. I stated retroviruses, because of some of the unique qualities of some of them to pass back and forth through the blood brain barrier and lie dormant in central nervous tissues. Think mono or multiple variations of herpes.

MSBOB wrote:Another is whether treatment for veins that have been self-contorted to maintain constant pressure should be "liberated" or left alone.

Remember that in CCSVI we are discussing intraluminal abnormalities, such as valves or septums or webs, not stenosis of the veins themselves. The Cleveland Clinic autopsy study found the same percentage of vein stenoses or narrowing in MS patients as in healthy controls. Any theories such as self-contorting of veins to maintain pressure or that the lowered perfusion of MS means lowered volume of flow leaving the brain means narrowed veins are not consistent with the Cleveland Clinic autopsy study that showed equal degrees of vein wall stenosis in healthy controls and MS patients. What the autopsy study did show was a much higher percentage of intraluminal abnormalities in MS patients.

Remember that in CCSVI we are discussing intraluminal abnormalities, such as valves or septums or webs, not stenosis of the veins themselves. The Cleveland Clinic autopsy study found the same percentage of vein stenoses or narrowing in MS patients as in healthy controls. Any theories such as self-contorting of veins to maintain pressure or that the lowered perfusion of MS means lowered volume of flow leaving the brain means narrowed veins are not consistent with the Cleveland Clinic autopsy study that showed equal degrees of vein wall stenosis in healthy controls and MS patients. What the autopsy study did show was a much higher percentage of intraluminal abnormalities in MS patients.

I don't view the Cleveland study with the same awe as you. With all the abnormalities found, unexpected in both MS and controls, and a very small sample, it really doesn't say much more than there might be something more to study. I could not draw any conclusions from it. The stats and criteria for categorizing the findings are purely observational and don't have much statistical power. It is difficult to say what is normal, what is natural variation, and what is pathological. I would say, "that's interesting." Then I would wait for follow up studies.

It is not evidence of anything, except the strangeness and variation of the IJV in humans.

But, you can't have your cake and eat it. If this is a study you would weigh highly, than it pokes some holes in the ccsvi theory as well, along with chronic inflammation affecting the jugulars. One "fact" would be the claim from Zamboni for constant reflux in the IJV in 71% of MS and 0% of controls. If that were the case, the Cleveland study would have supported some vascular remodeling consistent with Glagov's phenomenon.

That, or it is what it is and not to be read into so much.

There is said to have been a shift in the tissue of patients with CCSVI, from collagen I to collagen III. I'm waiting for publications on those findings. Dr. Zamboni presented at a conference about what he had seen in autopsy tissue of CCSVI stenoses in the jugulars and tissue removed from live CCSVI patients during graft bypasses in the jugulars. There were slides showing these tissues. We are in agreement that more research will be clarifying. The autopsy study is small but the study was headed by a well-respected neurologist, Dr. Fox, and it lays the groundwork for further autopsy studies, and it showed exactly what would be expected based on what has been seen clinically on intravascular ultrasound.

The big point is to clarify between an intraluminal abnormality and a stricture of the vein, and to consider CCSVI to be primarily a condition of the former, not the latter.

interesting cece. made me track down this:

Structural alterations of the vascular wall in magnesium‐deficient mice. A possible role of gelatinases A (MMP‐2) and B (MMP)

think i will investigate further under a different topic. doesn't seem on track with critical/neutral perspectives, just trying to unravel the puzzle

http://www.biomedcentral.com/1471-2377/11/132
This link to the multicenter study recently published. It shows the predictive power of age at onset of MS and EDS for a ccsvi positive diagnosis. It also shows the power of the inconsistencies of the clinics to properly assess ccsvi.
Dr. Fox's work could lead to making better diagnosis procedures. It seems to be needed.

The collagen changes are very interesting. It does point to important research avenues. Bring out the DRUG$!

Totally agree with you Jordan. In all fairness, not many of us discussing this are medical professionals. Plus, doctors are very specialized and may not be cross discipline qualified. I still don't like the basis for ccsvi diagnosis and treatment. The reasoning is the simple matter of odds of hitting 2 out of five criteria, each criteria with its own margin of error. It cannot be denied that bias is playing a huge role in study outcomes. Ccsvi needs redefinition in order to yield consistent, replicable data.

Yes, intraluminal abnormalities would be a specific type of stenosis. A fixed valve, for example, would be an intraluminal abnormality (an abnormality within the lumen of the vein, as opposed to an abnormality of the venous wall) AND a stenosis, because it blocks flow. Dr. Zamboni's research discussed webs and valves and septums and the like, although I don't know if he referred to them as intraluminal abnormalities? I toss the word about because it's the most precise word for what we're discussing, and precision is good.

I am not a medical professional. Are you, MSBOB? You seem to know your way around the lingo!

My understanding of the 2 out of 5 criteria on the doppler ultrasound was that Dr. Zamboni tested the patients with MS and the healthy controls, and found that 1 out of 5 criteria was not enough to separate the two groups of people, but 2 out of 5 was. This is a screening test, however, and an imperfect one. It is not as easy to image the insides of our veins from the outside, as it is from the inside with IVUS or catheter venogram.

I should be clearer. Thanks, cece. I am not a medical professional. I am a sales analyst.

Wow. I came on here to see the "neutral/critical perspectives but I must have clicked on the wrong. My bad. Scorp

I am trying to be as neutral as i can, but I will tiptoe around because of the highly defensive position people take. I like the discussion, although I highly doubt that ccsvi will be anymore accepted than chiropractic. I guess the difference is that chiropractors can't cut you open.

I am completely neutral to the debate, but wonder why folks put so much stock in something that science says is iffy, while often turning their backs on things that science says works? This is not a flame, I am just curious. Campath, cytoxin, and HSCT seem to work, according to science, but I cant find anything on ccsvi. I started my search for a way to help my ms before I was even fully diagnosed, and now I am looking into aggressive treatments for my rapidly accelerating disease. I started looking into this, and when I looked into the other options, I settled on trying to get hsct procedure. I understand that there may be a point where one has to take every option, and I may one there eventually. I would never judge a person for buying into a treatment to help themselves, but would like to know why they pick this one. Thanks

I had stem cell treatment in October 2009. 8 administered into the spinal fluid and 2 intravenously. It did absolutely nothing for me. And the 4 others I met and remain in contact with also have become worse. I had CCSVI treatment on June 2010. It was amazing the improvements I got. Unfortunately I was one of the early ones that was done and my valves were not addressed and I restenosed. I had it done again, with the same results. And tried a few more times but my veins are now scarred and angioplasty is no longer an option.
I know of 2 that improved with stem cells. They were RRMS. So maybe they would of improved if they had done nothing.

shucks wrote:I am just curious. Campath, cytoxin, and HSCT seem to work, according to science, but I cant find anything on ccsvi.

If you look at the science, you will find none of these you mentioned work every time, only for some. And while we are here CCSVI is the same, it has not worked for me.

Absolutely correct It does not work for everyone and sometimes it makes things worse. That is in my case as my veins are now blocked with scarring. I know of one person who with CCSVI treatment got numbness immediately (minutes) after the procedure. And did not have it before and has declined more since the procedure. So it is a bit of a crap shoot.