Tuesday, January 26, 2010

OMG!! Its actually happening, CCSVI!


News from Dr. Zamboni- CCSVI lesions classified as congenital
Today at 10:47am
Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-


This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

Saturday, January 2, 2010

Some thoughts on CCSVI

The Liberation Treatment is based on new findings that CCSVI (Chronic Cerebrospinal Venous Insufficiency) blockages have been found in the jugular veins and/or the azygos vein of all MS patients tested. A simple 'balloon' or ‘stent’ procedure to open the veins can be used. This may be the cure!

I have been following all the new reports, news, Facebook groups and forums on CCSVI. It seems the more news we get the more questions we have. One of the big (simple) questions no one seems to be able to answer is: if there is a blockage anywhere why not treat it? Does it matter if you have MS or not? If you have a heart related blockage it's fixed. If you have blood clots or issues in your legs they are fixed, no questions asked. If anyone has a blockage in their jugular veins and/or the azygos vein why isn't it fixed asap? It's an obvious problem IF IT'S BLOCKED.

I am VERY encouraged by the reports people have been posting after having the procedure. It appears that at least 3-4 people a day are having the liberation treatment (NOT in the US). It would be of great benefit to everyone if these people were in a professional study and being tracked on their progress and what is happening with them. Sadly the wheels turn slowly and things are not in place yet. Hopefully some day soon.

A few things I have noticed
1. CCSVI has a REAL place involving MS.
2. People are moving ahead with the treatment on their own, regardless of the "unconvinced" and non-support from insurance companies.
3. People with MS having the procedure show marked improvement in their MS symptoms.
4. There is a great ground swell in the MS communities to get this research going.
5. The US is keeping this story very quiet in the news and in the public eye. Why? One can only speculate. Ahh...pharmaceuticals come to mind immediately.

I will have a lot more on this subject in the future I have added some links and information below I have gathered if you want some additional information on CCSVI.

News reports:
CTV NEWS (lots of videos and reports.
This is MS
Facebook group CCSVI-in-Multiple-Sclerosis
Facebook group MS Liberation Treatment (CCSVI)

There are many small things you can do to help your vascular health while waiting to be tested or treated for CCSVI. While these actions won't get rid of any venous obstruction, they can help your whole body and maybe slow down some of the reflux and damage from jugular stenosis. Again, I'm not a doctor- these are just some common sense steps you can take right away.

1.Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything the has too many ingredients (like overly processed foods.) No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.

2.Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.

3.Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.

4.Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.

5.Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.

6.No more smoking. Sorry. Cigarettes are vasoconstrictors- they close up blood vessels and can make stenosis worse, That's why we've seen so much about smoking and MS in the news lately. Cigarettes actually slow down the immune system...so you'd think they'd be good for MS, if MS was autoimmune! But cigarettes are linked to MS progression. In the CCSVI paradigm, that's because they inhibit good blood flow.

7.Look into inclined bed therapy. Raise the head of your bed about 4 inches. Use a 2x4 board underneath the head of the bed. The jugular veins are the only exit route for blood from the brain back to the heart when we lie down flat. If you sleep tilted up a bit, your vertebral veins can help out. Don't use pillows, this will crimp your neck. Use a board under the bed. It may take a few nights to get used to, but we've been doing it for awhile.