in simple terms...?

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

in simple terms...?

Postby RedPenguins » Tue Jul 21, 2009 9:32 pm

hi everyone,

I just came on over from the HiCy board....I see there's a lot of action here - and I want to know more about it.

Can anyone (duh! I know a lot of you can) please explain this to me in plain English? I have the articles and links - will check them out - but am hoping someone can help me out. I want to tell others about it.

I know I wouldn't be a good candidate for it right now, as I'm only two months post HiCy.... but it sounds like this treatment might hold another piece to the MS puzzle....so I need to be up on it - as maybe my headaches are related (the only symptom I have really). Sometimes when I get too tired, my vision gets wonky...but nothing major.

Anyhow - kudos to those of you who have bravely tried this new treatment and for letting us know about it!!!!

I guess a part of me is a little scared that my "recovery" will go away like it did after my first round of HiCy....so I need to know about this!!

Thanks,

~Keri
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Postby marcstck » Tue Jul 21, 2009 10:19 pm

Here's a link to an explanation I posted on my blog. When I first posted it, it received a good response from the folks on this board. The page has received hundreds of hits, and I think it's coming up on search engines when people query CCSVI...

http://www.wheelchairkamikaze.com/2009/ ... sease.html
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Postby Loobie » Wed Jul 22, 2009 5:21 am

There's also a thread on here called "CCSVI - just the facts". Here is the link. http://www.thisisms.com/ftopict-7374.html that puts it in layman's terms.
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Postby mrhodes40 » Wed Jul 22, 2009 7:41 am

And don't ignore the big thread - the discussion started in December and it has 53 or so pages of the first "responders" :lol: picking at it and trying to figure it out.

53 pages of forums posts is not that much to read through as a lot of it is 'chat' not information, but if you do that you will see how the thinking and information evolved among TIMS members here; there is a lot of explanation and question and answer in that thread.

This idea is well supported because an immense amount of MS data and research already acknowledges the presence of vascular anomalies and it is already well known and commonly understood that stenosis in the legs causes lesions in the foot.

But this CCSVI model, or the assumption that a stenosis discovered in an MSer is the cause of MS lesions, is not yet "proven" . At this point in time there is not even one finished, published study showing positive results of treatment. However, nearly 850 people have been through doppler studies by Zamboni showing stenosis in all the MS patients. Dr Simka's smaller replication also showed stenosis in all MS patients as well as finding that 3 probable MSers also had stenosis. This last fact was left out of the final paper as they did not have complete follow up data... MRI's etc... to show the final diagnosis of CDMS.

But knowing that a ton of MSers have doppler evidence of reflux when Dr Zamboni's doppler protocol is administered by trained people is not what we really want to know, because after all if you get a CT or venogram to see if you have stenosis and you do, you want to know if treatment to remove that will help.

But those studies are not done yet......

The first 100 people treated were only operated on in January by Dr Zamboni. His results of that group who received what he calls the "liberation procedure" are expected next winter.

Dr Simka has a study including treatment that is starting right now.

Dr Dake is evaluating people on the basis of venous headache and or edema. If a stenosis is seen in the course of this investigation he may suggest treatment to alleviate the headache. They will follow you to see if your headache resolves and also will follow any impact treatment has on MS. He has added staff to manage the scheduling of the volume of patients interested in this and apparently has about 50 people in process. He hopes to have a paper ready on this by Autumn.

meantime in Sept 8 in Bologna there is a conference put on by Dr Zamboni at which he will present his findings so far. Dr Dake will also be there as will Dr Simka and others who are invited.

For a larger study the Jacobs Neurological is in the middle of doing dopplers on 1000 patients using the Zamboni protocol. The confidentiality on that is as tight as a drum. No one is permitted to discuss it at all. However since this is the same group following some of Dr Zamboni's patients and since they did not do some meaningless little 40 person study, I postulate that they made such a large financial investment in what is a new idea because they already knew the findings were going to be significant.

The best anecdotal information about how people are doing after treatment is here in this forum. Dr Dake has not required people to keep mum on treatment. As a result you will see people posting their subjective results here, subjective meaninghow they think they are doing after treatment.

Note however that the first person treated is now 2.5 months out, that is Jeff. I am person number 2 treated now 2 months out with follow up on the 4th.

marie
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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Postby Jamie » Wed Jul 22, 2009 9:30 am

Keri

http://www.thisisms.com/ftopic-7374-0-d ... rasc-.html

I found that post useful when breaking it down for people.

Jamie
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