Need a workable, simple definition of CCSVI & stenting

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Need a workable, simple definition of CCSVI & stenting

Postby HappyPoet » Thu Oct 29, 2009 3:56 am

Hi everyone,

I've mentioned this elsewhere in posts, but now I'm starting a new thread about the huge need for a short, simple definition of CCSVI that explains the concept and stenting for both the jugular and azygous veins.

Perhaps everyone can help develop one???

Otherwise, I'm afraid patients aren't going to be telling their doctors much of anything.

After all, a major symptom in MS is cognitive problems, so a boiled-down definition would help greatly in "spreading the word."

I'm on another forum, and I'm having a hard time explaining this theory and the stenting. I seriously believe some of those readers think I'm crazy for talking about CCSVI. And it's a shame.

And sending people to this forum is usually a BIG mistake... 1,000 pages of info is daunting. Posting here is daunting.

Thanks for your time, and I hope you understand the need.

~HP
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Postby jay123 » Thu Oct 29, 2009 6:12 am

Check out the sticky thread 'just the facts' on the top - I think it's what you are looking for -
http://www.thisisms.com/ftopict-7374.html

You can also check out the 'spreading the word' thread -
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Postby cheerleader » Thu Oct 29, 2009 7:03 am

Deleted....see GiCi below
cheer
Last edited by cheerleader on Thu Oct 29, 2009 8:54 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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simple definition

Postby GiCi » Thu Oct 29, 2009 8:37 am

HappyPoet,
I agree with you that reading what has now become a book on CCSVI can be a daunting task. Not many people have the required time and perhaps the required level of education for reading the mass of data and understanding it.
Your point is well put: let's try to simplify things.

Everybody is familiar with varicous veins in the legs: it is a very common condition. The veins become big and easily visible (not a very beautiful sight), the legs swell and, in the worst situation, ulcers (breakdown of the skin) may appear near the ankles. These lesions are caused by bad drainage of venous blood with conseguente stagnation of blood and do not tend to heal unless proper drainage of venous blood is re-established.

The great idea of Zamboni was to think that maybe the same mechanism applies to the brain: the pacques in MS might be the consequence of bad drainage of venous blood. He studied nearly 100 MS patients and found that each one of them had problems with the jugular veins (which drain the blood from the brain) or the azygos vein (which drains venous blood for the spinal cord).
He thought that the only way to heal the placques would be to re-establish a normal venous drainage and started to treat patients by dilating the narrowings that he found in the jugular and azygos vein.

A simple definition of CCSVI is contained in what the initials stand for: Chronic Cerebro-Spinal Venous Insufficiency. The blood from brain and/or spinal cord does not drain away well with consequent increase of pressure and stagnation.

I hope this could be of some help.
GiCi
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Postby cheerleader » Thu Oct 29, 2009 8:53 am

Thanks, GiCi...nothing better than having a cardiac surgeon/patient of Dr. Zamboni break it down. I put your explanation on the Facebook page as well.
baci baci,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HappyPoet » Thu Oct 29, 2009 11:00 am

Hi Jay and Cheer,

Thank you both very much for your time.

I have read, read, and read, but . . .

A host of MS symptoms make it hard for me to read, read, and read: nine (9) different vision problems, headaches, short-term memory problems, brain fog, comprehension troubles, fatigue, inability to sit for more than a few minutes, and more.

Keeping up with reading the "Just the facts" thread, which I have done since its beginning, does help a little. What is greatly needed, though, is a couple of sentences, as opposed to a couple of paragraphs, that correctly define CCSVI and the stenting procedure.

I'm just trying to explain what is needed (a short definition), why it's needed (various cognitive MS symptoms that many MSers have) and where it's needed (other MS message boards) in order for me to help "spread the word."

It's also hard for me to articulate my thoughts and to type -- why, it's taken me hours just to type this reply.

Thank you again, very much, for your time, patience and understanding.

~HappyPoet
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Postby HappyPoet » Thu Oct 29, 2009 11:10 am

Hi GiCi,

Thank you very much. We were thinking alike!! I had been using this analogy until I learned it wasn't entirely correct:

"CCSVI is like having varicose veins of the legs in one's brain."

Mrhodes40 and radeck told me in the "Physiology" thread that the varicose veins in my analogy are in the neck/chest, not the brain, which made me stop using that analogy altogether because it brought up more confusion... I also ended up asking them more questions about why collateral veins and stenosis are not found in the jugular up in the brain, etc.

Your idea is terrific! It's simple. It's understandable. I'll just add, when I talk to people, that stents put in the vein help the blood to flow properly again.

CCSVI = Chronic (happens continuously) Cerebro-spinal (brain and spinal cord) Venous Insufficiency (varicose veins - jugular/azygous).

Thank you very much.

~HP

P.S. Edited to include a few more thoughts and make corrections.
Last edited by HappyPoet on Thu Oct 29, 2009 5:23 pm, edited 1 time in total.
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Postby mrhodes40 » Thu Oct 29, 2009 3:20 pm

If you want to post something somewhere you could use this news story from SUNY to get the conversation started
http://www.wivb.com/dpp/news/health/UB_ ... S_20091014

I agree Vericose veins are a good way to talk about it because people understand that...., I often use that myself
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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