News from Dr. Zamboni- CCSVI lesions congenital

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

Postby cah » Tue Jan 26, 2010 9:35 am

Do I catch this right?

CCSVI is now an "official" condition - which can now be "officially" diagnosed and then be treated according to the guidelines of the consensus conference?

So to speak: If you have MS, it indicates that you have CCSVI. So MS would be merely seen as a symptom to CCSVI and warrant scanning for CCSVI?

That really would be a bit upside down... but a very fast way to treatment, as there normally aren't those long-term studies for plain physical conditions that can be treated by (known) surgery.

Again, do I catch this right?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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CCSVI congenital

Postby Dovechick » Tue Jan 26, 2010 9:43 am

Cheerleader, I cannot contain myself with excitement, this is so significant in our battle to get the UK to do the research into the link between CCSVI and MS... Thank you so much for this information. This is so exciting.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby mrhodes40 » Tue Jan 26, 2010 9:45 am

Lord yes it has to go in for sure---

no not here much at all just a quick guilty peek once in a while :wink:

This is an absolutely incredibly GREAT development!
If we have a DRG code for a truncular venous malformation this will make payment more sure.
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 ozarkcanoer » Tue Jan 26, 2010 9:50 am

cheer,

Stuart Schlossman seems to imply that you are a rabble rouser over on Facebook, LOLOL. What in the world is his motive ?? He is just a sincere CCSVI skeptic or really afraid of the mob ???

ozarkcanoer
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Postby cheerleader » Tue Jan 26, 2010 9:58 am

ozarkcanoer wrote:cheer,

Stuart Schlossman seems to imply that you are a rabble rouser over on Facebook, LOLOL. What in the world is his motive ?? He is just a sincere CCSVI skeptic or really afraid of the mob ???

ozarkcanoer


I dunno, OC. It's not like we're competitors :)
He's not a skeptic, though
maybe he's having a rough morning?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jr5646 » Tue Jan 26, 2010 10:03 am

Great news !!!!! I could have used this today at my appt. with a (very skeptical) vasc Dr. - who promptly referred me away, btw ... whatever. Trust me, he will be receiving copies of this as will the other Dr that blew me off.

Anyway, now maybe they will take things to the next step and prescribe pre-natal vitimans (like folic acid).. for vein/artery fetus development and potentially prevent MS from developing in the first place.. Those of you who understand this better can speculate?? I would imagine other conditions are linked as well. VERY VERY interesting to say the least.

If Zamboni doesn't win a nobel peace prize for medical breakthru, I'll eat my hat.. on second thought, Obama should just give Zamboni his haha...
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Postby jay123 » Tue Jan 26, 2010 10:14 am

Cheer -
This is just tremendous news and I already emailed it to a number of vascualar doctors, you know I am not a doubter, but how was this proved to be congential?
Thanks!






PS - How could Obama give away an award he so richly deserved, I mean look at what he has accomplished this year; closed Gitmo, got us out of Iraq, got us out of Afghan.., enacted health care, .. I mean the list just goes on and on! LOL
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Postby jr5646 » Tue Jan 26, 2010 10:42 am

jay123 wrote:Cheer -
This is just tremendous news and I already emailed it to a number of vascualar doctors, you know I am not a doubter, but how was this proved to be congential?
Thanks!


Jay this should shed some light on congenital venous malformation>
http://phleb.rsmjournals.com/cgi/reprint/22/6/249.pdf


PS - How could Obama give away an award he so richly deserved, I mean look at what he has accomplished this year; closed Gitmo, got us out of Iraq, got us out of Afghan.., enacted health care, .. I mean the list just goes on and on! LOL


Gitmo moved to Illinois, Troops moved to Afgan, US Health Care still sucks.. all this in only one year...
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CCSVI

Postby Edser » Tue Jan 26, 2010 11:03 am

Good Evening TiMS,
Thank's for every thing Joan "RESPECT" "THE TRUTH IS OUT THERE"
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Does this mean treating it will be covered by insurance?

Postby fogdweller » Tue Jan 26, 2010 11:20 am

I recognize that official scientific statement like this does not automatically mean that the insurance companies will cover treatment of the condition, but we should use this additional medical recognition to pressure the insurance companies to cover it. They cover all the far less useful antiinflamatory treatments at a huge cost per year, so we should be able to bring real pressure to bear to cover this as well and perhaps avoid the cost to them.

Thoughts on how best to do this??
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Postby AlmostClever » Tue Jan 26, 2010 11:30 am

Surely it would be less expensive to correct CCSVI than to pay for expensive meds through the course of one's lifetime. Eh?

I would think that there are smart people who crunch numbers for insurance companies who might figure this one out even without our help.

This is why Big Pharma might be a little pissed if this all works out...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby jay123 » Tue Jan 26, 2010 11:33 am

I think the one thing that would help is for a official diagnostic code and a procedure code has to be given to this by Medicare, for example the code for MS is 340. The codes are needed for insurance companies to bill it against.
A good example of this is the walkaide, where I believe the codes just got assigned this year. Private companies wouldn't pick it up until te medicare codes were assigned.
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Postby MS_mama » Tue Jan 26, 2010 12:35 pm

Does anyone have access to the full text of the paper? I'm wondering specifically if they mention CCSVI as a vascular disorder by name, and what were their official recommendations as to treatment--balloon, stents, both??
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Nasti » Wed Jan 27, 2010 6:13 am

Well yes, it kind of mentions it and mentions MS at only one place - that it is suspected to be caused by the trucular venous malformations which occur at 3-4 places, and it lists all the types of healing for all the types of venous insufficiency, among which balooning and stenting. It is written in highly medical vocabulary, I didn't get a lot, but if you take it to a vascular surgeon they would know what to look for and how.
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Postby JoyIsMyStrength » Wed Jan 27, 2010 6:58 am

You mean *gasp* that this disease isn't all my fault? That when someone sadly shakes their head and says accusingly, "It's all that Diet Coke you used to drink..." I can say nope, sorry, this is congenital...

I will still avoid Aspartame just on general health principles but this is very freeing news. Or... liberating!
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