This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey all,


..if a CCSVI candidate had bilateral proximal IJV stenoses at the level of the brachiocephalic/innominate veins, and permanent patency could not be achieved, would it be possible to transpose the IJV to a more proximal segment of the innominate or distally to the subclavian veins?

-M

The stenoses are within the IJVs, not the other veins. Often it is a stenoses of the valve of the IJV. There would be nothing to be gained by moving the IJV.

The experimental vein grafting that we've heard about lately involves removing the bad section of IJV and replacing it with healthy vein taken from the leg, but without affecting where the IJV is attached to the innominate vein.

I think it is early to give up on the treatment of veins by angioplasty. Most people have had treatment by providers who have not perfected their techniques. IVUS is an essential tool for sizing the balloons, and many providers do not yet use IVUS.

And it might be unreasonable to expect permanent patency. Dr. Sclafani has said that the goal is to extend the length of time between treatments to 2 - 3 years. There are thick globs of valve tissue in our veins (or at least there was in mine) and ballooning will weaken it and push it aside but it is still there as residual valve tissue, and it may pop back up or thicken again over time. Dr. Zamboni has patented an endovascular device that will slice off the thick fixed valve leaflets which might be a more permanent solution but not yet tested or on the market.

For now I am accepting that my CCSVI will need some chronic care and repeat treatments, just as my MS needs chronic care. It would be nice to be rid of both! But I am healthier than I was a year ago.

I, myself, am not even entirely convinced that most people have a 'true' case of CCSVI. Most MS symptoms mimic vasculitis to an extent. I have had repeated procedures (x4) in the space of 14 months with 'good' results apart from my final one which was deemed failed - and boy i knew it before he told me.

Anyhoo, I decided to get myself tested for pathogens and low & behold - positive for a vein loving bacteria (chlamydophila pneumoniae). I started treating this WITH all returned MS symptoms in November, it is now April and I do not have a CCSVI symptom in sight and my IJV volume flow rate has increased to 'normal' level. My jugulars have NEVER been 'normal' even post surgery with a 14mm balloon.

I just think CCSVI is likened to varicose veins (vv). If the incompetence source is the ovarian vein and you treat the legs only, they willl return in a matter of months (vv), same with CCSVI - some cases may be pathogen induced and that source must be treated too for successful plasties.

i think a 14 mm balloon is a tad on the small side. My average balloon size is 13.7 with a range of 8-20mm. i wonder if you were ever treated to the proper size. it would be curious to have another venogram (not likely eh?) to see if things are improved after antibiotics. But perhaps you are suggesting that the ccsvi is not the culprit but an infection. Do you think the infection is located in the brain lesions?

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Yes, I strongly believe an infection is found within the MS brain - not in all persons however.
Chlamydophila pneumoniae (CPn) has been found in the CSF (Stratton, 1999) and other studies have confirmed this.

Bacteria -> Venulitis -> Intimal Hyperplasia

http://phleb.rsmjournals.com/content/ea ... 8.full.pdf
This article pieces it together.

M

The venulitis article! That was an interesting one.
So the location of the venulitis is suspected to be in the usual CCSVI veins: azygous and internal jugular, as well as the vertebral veins.
Would there be visual evidence of inflammation on phlebography if there was venulitis?

One of the interesting things is that some bacteria or viruses do better in lower temperatures. With our autonomic system out of whack in pwMS, some of us tend to have a lower-than-normal body temperature, and some of us are on immune-suppressing drugs, which might create a nice friendly environment for bacteria or viruses.