North America CCSVI Scociety

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

Postby Vonna » Mon Jan 11, 2010 1:16 pm

Hey Bestadmom,
Thank you so much for all you are doing. I do understand what you mean about things taking time. I can imagine it must be a huge undertaking. It's not you that I am frustrated with at all-quite the contrary. You are in the prison with us, trying to convince the guards.

Better yet, rather that convincing the guards, we should try to convince those that are just passing by on the other side of the street. We'll have to get their attention first. The key is easy to make, if we can get the attention of the right people. We gotta all yell, loud, at the right time, and in unity! Hey, that might work better than the one on one approach.
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Postby bestadmom » Mon Jan 11, 2010 1:25 pm

Hi Vonna,

You are so right about getting attention. That is the hardest part. I think we are going to have to go the grassoots way in the US because the national press just doesn't seem motivated.

I hope that once Buffalo can confirm that CCSVI and MS are inextricably linked, things will change. Until then, we will continue to work behind the scenes. Insurance will not pay to treat CCSVI as an MS treatment at this point, so until that link is proven, they will only pay to treat CCSVI for what it is. So for now, I don't think the insurance companies are our best friends.

We need some big benefactors who have MS in their families and aren't in bed with the NMSS.
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Postby cah » Mon Jan 11, 2010 1:39 pm

Vonna, what a perfect picture this prison on fire is. Could be the image on a CCSVI movement ad!
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby cheerleader » Mon Jan 11, 2010 2:08 pm

Vonna- you're right, more needs to be done, but I believe right now we need more results and research.

Like BestAdMom has said, after we have results from Jacobs and more papers on the connection to CCSVI and MS, we'll have more support. As hard as it is to recognize, we're still in the baby stages. That's why my message has been local, local, local. Most docs across North America haven't even heard of CCSVI. And we need to expand the understanding and knowledge of this condition. That means bringing copies of the Zamboni papers and related studies to interventional radiologists, vascular doctors, and GPs. It means education and boring, unglamorous stuff like reading research papers.

I'm studying the history of how the NMMS got started...and ironically, it was Dr. Tracy Putnam who helped put the whole association together in the 1940s. He was a neurosurgeon at Columbia University who believed that MS was created by venous congestion and actually created MS like lesions in dogs by blocking their veins. There was a huge patient push for a cure, and he tried treating MS with blood thinners. Because Dr. Putnam didn't cure MS, patients became angry and disillusioned, and the baby was thrown out with the bath water. (read the history lesson from Dr. Haacke thread for more) Part of me wants there to be more corroborating research before we jump out with a new society...trying to learn from history, and trying to be wise about all of this. Hope that helps explain where my head's at...
Joan
Last edited by cheerleader on Mon Jan 11, 2010 2:17 pm, 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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Postby Mechanicallyinclined » Mon Jan 11, 2010 2:14 pm

As soon as we see some trial results that associate CCSVI to MS , that's going to change the ball game. From what I understand, the Buffalo preliminary results should be in possibly in February.
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Postby Renoandi » Mon Jan 11, 2010 2:24 pm

Vonna great anaolgy!

I have been trying Local as well as nation wide. Maybe just the fact that we are trying to start something like this will get some medie attention?

I know that more research needs to be done, but if we can get interventional radiologists, vascular doctors, nurses etc, who are open to these ideas, maybe it can help move things along at a faster pace.

I think we are all so frustrated with how slow things go and our health is on the line.

I know for myself I am slowly going down hill and the more time it takes the more damage that I will not recover from.

So we may be grasping at straws...But it keeps me going and gives me hope.
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby bestadmom » Mon Jan 11, 2010 2:35 pm

Andi,

A small group of us in New England did an outreach effort to 100 university interventional radiologists in NY, NJ, CT, and MA and got some very interesting results.

We wreaked havoc at a couple of hospitals and universities betwen the radiologists and neurologists, but we got some interested doctors who are testing us for CCSVI, and setting up trials. We got attention and raised awareness, not just for ourselves but ultimately for everyone with MS.

Until studies get IRB aprovals and begin to recruit, everything is confidential, but we feel like we were heard by those who wanted to listen.

If you'd like me to email you our source lists, where you can sort by state, or our letters, pm me.

Michelle
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Postby ozarkcanoer » Mon Jan 11, 2010 2:41 pm

I just wanted to say that I think many people have listened to me here in St Louis, but as far as I know nothing is happening. My one contact in neurological research just told me last week that things are bubbling at Washington University but he can't tell me anything. I guess no one here wants to go public one way or the other. Maybe they are all waiting for Buffalo !!!

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Postby cheerleader » Mon Jan 11, 2010 2:55 pm

bestadmom wrote:Andi,

A small group of us in New England did an outreach effort to 100 university interventional radiologists in NY, NJ, CT, and MA and got some very interesting results.


We may need to go a bit beyond our local geographic boundaries, like the New England group did. I tried my local universities, and ended up at Stanford, 500 miles away from home...university IR docs are the only way to diagnosis and treat CCSVI now- honestly! Like Michelle said, you start out doing it for yourself, and you'll benefit others.
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Postby Mechanicallyinclined » Mon Jan 11, 2010 2:56 pm

I know my clinic in Winnipeg said they are watching Buffalo because that is a trial of reasonable size.
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Postby bestadmom » Mon Jan 11, 2010 2:58 pm

OzarkCanoer,

If there is a race with researchers to figure out ccsvi, they owe us no answers until they have them to report. They cannot compromise the intergrity of their studies. It means those who sign up to be in them would be biased. I also feel that without some direction from Buffalo, researchers are jumping the gun.
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Postby Vonna » Mon Jan 11, 2010 3:32 pm

Bestadmom,
Are we there yet? Are we there yet? It's just so hard to wait. :?

People here have good ideas on what we can do NOW. It helps to read what other people are doing, even if they are seemingly tiny victories.

Don't worry, I'm not planning pushing to be tested until I know the radiologist who is testing me knows what to look for.

As far as big benefactors with MS or MS in their family, maybe we can compile a list so that these can be contacted.

cah, Thanks! I've been seeing this picture in my mind for a few weeks now. I just wish I knew how the story ends!

Cheerleader,
So, we need a very clear cut, to the point, easy read document for professionals that don't have a lot of time. It needs to be very informative with references and links for further investigation. CCSVI does not need to be touted as the miracle cure, or they will write it off without even reading it. I know that there is tons of info. out there to share, but any that fit this description? A Q & A sheet works good for this. That's how I talked my Neuro into LDN. I just faxed the Q & A, and he prescribed! I think that if I had taken tons of papers in for him to look at, he would have felt threatened, like I knew more than he. Anyway, I'm rambling I know. If this has already been done, please point me to it. If not, it might be a valuable project.

The Putnam history is very interesting.

In light of the Putnam history, I think you will find this statement by Dr. Alex-Rae Grant. He is the Consortium for Multiple Sclerosis Centers website's Project Leader for Neurology. Which means, neurologist go to this website for latest news on MS, and to get licensed to be an MS specialist. This is his "expertise":

[/quote]The recent interesting work by Zamboni et al raises an idea from far out in left field; could MS be caused, or at least accompanied by narrowing or blockage of the veins that drain the brain and spinal cord? Ok, so none of the 50 years of research in MS so far have suggested this. And people who are known to have blockage of the veins draining the brain (Cortical vein thrombosis) don't get MS. Pathological studies of MS patients have never suggested this.[quote] :?

Thanks Renoandi
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Postby Mechanicallyinclined » Mon Jan 11, 2010 3:41 pm

Vonna

No one is promoting this as a miracle cure.
If you want a question and answer sheet go to CCSVI on facebook. There's some clear information there.
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Postby Johnson » Mon Jan 11, 2010 4:10 pm

Vonna,

I very much liked your little parable. Thanks for that.
My name is not really Johnson. MSed up since 1993
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Postby Sharon » Mon Jan 11, 2010 4:40 pm

Vonna -

If you want a brief description of CCSVI to take to a neuro, I might suggest you use Dr. Jack Burk's article which was in the MSAA
http://www.msassociation.org/news_cente ... sp?a=ccsvi
The article may be a little more cautious than what we would like as MS'rs, but it is written by a MS research neurologist who is well respected in the neurological community. My hope is that any neuros who read the article think to themselves that if Jack Burks is looking at CCSVI than they probably should be looking at it also.

I am learning there is a process for acceptance of new theories within the medical community. It is time consuming, it is ego driven in some cases, it is expensive, it is cautious. The results of the Buffalo study to be released in February will be a part of this process - a very important part. Unfortunately, the funding is going to be an issue because there is not a product to be marketed to the public such as a drug.

We need to continue talking about CCSVI to anyone and everyone. This includes your boss, your dentist anyone who will listen to you for a minute. I think is was Bestadmom that mentioned, it is like being in sales -- you make 100 calls before you get the attention of 1.

Sharon
Last edited by Sharon on Tue Jan 12, 2010 8:29 am, edited 1 time in total.
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