Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby chrishasms » Sat Apr 25, 2009 9:07 pm

Yes that was a really good summary thank you. I am actually going to print it all out and have him look it over and see what he thinks about it. I see him in September and the guy is totally into new ideas so I think he may get a kick out of it. I too will be interested in seeing what he thinks. I just hope he isn't to busy to look it over because I hate to say it, but, the guy is really busy. Corboy here in Denver couldn't look into HiCy because he had to much other stuff going on with other trials so I could understand Kerr having the same issue. I just can't find someone in Denver who gets this.
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Postby Loobie » Sun Apr 26, 2009 7:54 am

More real life correlations (maybe; in my mind anyway). My MS presented as Uthoff's, ie, no symptoms unless heartrate and heat up. What's also up? BP during strenuous activity and probably overall venous pressure (is that the same thing?). But it's always felt that way when my vision starts to go from exertion. Is it the heat or the pressure/backup? The process is probably not that simple and it's still probably more heat related since they could "go out" with no effort and just a lot of heat, but I'm just trying to find connections in myself.
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Postby Artifishual » Sun Apr 26, 2009 7:59 am

hey lew wonder if the increase in pressure is due to heat? like in physics..
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Postby chrishasms » Sun Apr 26, 2009 8:05 am

You took the words right out of my mouth. You heat up, it increases your pressure even more than it is now, you feel worse. That is just a wild thought. I wonder if being closer to the poles, and the magnetism we have because of the extra metals stored in MS lesion (or body) is a reason the higher you go the more MS you find?
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Postby mrhodes40 » Sun Apr 26, 2009 8:24 am

Hi everyone,

Your brain cools itself by draining the extra heat through the emissary veins. the emissary veins have to drain through the jugulars of the vertebral veins (depending on position), one of which is refluxing in MS patients according to Dr Zamboni's work. SO the heat is not moving away as it should. It is actually true that all people do "worse" in heat becuae nerve transmission is slowed, but a healthy venous system drains it away well enough normal people notice it less both because they drain well and they have normal functioning nerves to begin with.

You actually generate a lot of heat in the brain so it has a special mechniasm for doing that. we've discussed and thrown aroun emissary veins on this thread before with abstracts so you can search.

summary to print out


Chris you did realize you can click all those links and read the papers didn't you? if you refer to the other thread for CCSVI? I'd take the Dec study with the venograms if I took just one paper, but it has less information about dopplers and how to do them in it.

The fantastic unbelievable great thing about this work is that all of those peer reviewed papers are available ONLINE. When have you EVER seen all the papers available online? These guys are trying to make it available so we can have access to the information, and no one should roll their eyes at this stuff: these are blinded controlled large studies. The replication is small but after such large work set the stage, so what?
Last edited by mrhodes40 on Sun Apr 26, 2009 8:28 am, edited 1 time in total.
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Postby sou » Sun Apr 26, 2009 8:26 am

Hi all.

A little off-topic, but somehow I feel that this could be a possible fate of our dearest Professor Zamboni. Merck-Serono had a shortlist of doctors that should be humiliated, because they expressed concerns about possible dangers of Vioxx:

Vioxx maker Merck and Co drew up doctor hit list

I feel that this is the rule and not an exception. What will happen with asll these billions invested on new drugs if MS is stopped in its tracks following a very simple procedure?

At last, who does target research? Drug companies offer great drugs for saving lives. But a drug is a commodity, following all rules that apply to them. Disregarding or, even worse, humiliating non-profitable research is unethical, not for the companies, but for our society as a whole.

May the God of pharmaceutics have mercy on Dr Zamboni and us.

sou

PS: I don't want to start a flame. I only wonder what the future of this research will be. If this is trolling, please ask me to remove it.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby cheerleader » Sun Apr 26, 2009 8:39 am

Sou...
You're not trolling- this is an honest concern. Believe me, that's why I want to find more vascular docs willing to test MS patients, so that we can have a concordance of vascular research to back up (or dismiss) Dr. Zamboni. I have no doubt that drug companies and neurologists will try to discredit the research, if it continues to prove true. But, frankly, I don't care. If major vascular doctors get on board, we'll have a resource for treatment. And we'll have the internet.

I had a very good friend who was CFO for a major pharma company. Way before we knew about MS, Jeff joked with her that it was about time they figured out the cure for cancer. To which she quipped..."Oh, we don't want the cure. We just want to find something you'll need to take the rest of your life." He was kind of horrified. She left the pharma business.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Apr 26, 2009 8:52 am

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Last edited by Lyon on Sat Nov 26, 2011 1:31 pm, edited 1 time in total.
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Postby chrishasms » Sun Apr 26, 2009 8:52 am

OMG listen to this cheer!!

A woman who follows my site used to work for the head of the CDC. She told me and I quote,

"I was told by the head honcho we will never cure another disease. We lost millions of tax dollars by curing Polio in the 50's. There were plenty of drugs out there that could control Polio to the point of somebody not getting worse but we cured it instead. No we learned our lesson."

Holy crap balls on fire!
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Postby Artifishual » Sun Apr 26, 2009 8:58 am

i just puked in my mouth a little
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Postby patientx » Sun Apr 26, 2009 9:12 am

"I was told by the head honcho we will never cure another disease. We lost millions of tax dollars by curing Polio in the 50's. There were plenty of drugs out there that could control Polio to the point of somebody not getting worse but we cured it instead. No we learned our lesson."


While I agree with the idea that cures aren't profitable, and money might get in the way of finding a cure, this statement isn't accurate. Polio was never cured. And I don't know what drugs existed to stop the progression of polio. The best they could do was put someone in an iron lung, and hope not too much damage was done.
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Postby cheerleader » Sun Apr 26, 2009 9:19 am

Sorry...I took us OT w/pharma (that's a whole 'nother thread!) Back to CCSVI.
I'll check in mañana from Stanford.
xoxox,
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mrhodes40 » Sun Apr 26, 2009 10:48 am

Please if you want to be part of the solution then seek the advice of a vascular surgeon who might publish or be patient and wait until it is widely available. Hopefully it won't be too long until the whole thing is understood and a treatment is accepted.

Cure-or-bust went to a cerebrovascular doctor. I don't remember if he was a university guy.

But Cheer and I both went to our local university and looked for a professor of vascular surgery there. Cheer's is cardiovascular, which actually is good because the problem in in the veins in the chest area.

I chose a professor of vascular surgery and head of the department at my local University med school who'd published related materials. Our hope is that these university professors will add to the body of knowledge supporting this work.

We have to get over this idea that somehow neurologists are the "top" doctors or the "best educated" and that they somehow know more than everyone else. It is actually a shorter specialty training wise.

It takes LONGER to be a vascular surgeon that it does to be a neurologist.

Longer.

After the years of MD school are over if you want to be a neuro it takes one year of preliminary studies in internal medicine and 3 of neurology training.

If you want to be a vascular surgeon and do these balloon stents and things it takes 5 years of extra training to learn everything you need to know to function in that field. They know a heck of a lot that neuro's don't.

Why would anyone expect a neuro to be the "expert" to decide IF the vascular research is valid? What expertise would a neuro use to make that determination?

Please be part of the solution and this grass roots effort to get the research out there. Let the neurologists talk to us about what they know leg tingles this week? bladder troublesome? see the neuro, the vascular guy can't help. But if you can't wait and feel you need to do something now, Please see a vascular doctor and get the dopplers rather than attmepting to convince a neuro there is something here. There is no need to bother a neuro with this; all they can do is ring the alarm.

Be honest: it's going to be VERY upsetting, how could it not be??

By the way, don't get the idea that neuros will be doing these dopplers if it turns out .....no way. You'll be referred to a vascular doctor for the work because that is the peson with the training to do this.

all that having been said, Dr Zamboni himself is not commiting to the idea that this is the CAUSE of MS
Paolo Zamboni, University of Ferrara, Italy, presented the rationale and preliminary results of an endovascular treatment for multiple sclerosis on the third day of the CX Symposium.

Zamboni explained that, though multiple sclerosis is an inflammatory neurodegenerative disease of the central nervous system of unknown origin - widely considered to be autoimmune in nature - it is strongly associated with chronic cerebrospinal venous insufficiency.

This link was supported by Zamboni’s recent study of 65 patients affected by clinically defined multiple sclerosis, along with 235 "healthy" control subjects. Though this study left open the question as to whether venous stenoses are the cause or product of multiple sclerosis.

"I cannot answer this at the moment," Zamboni told CX Daily News. "The interesting thing, though, is that when you can treat the stenosis, you have, in time, an improvement in those patients. Especially in the first phase."

Zamboni’s current, ongoing study is exploring the effects of endovascular treatment for stenosed jugular and azygous veins in a cohort of 100 multiple sclerosis patients, with follow-up to one year.

"I think that this is really promising," he said. "I have good cooperation with the neurologists in my country. And I think that this could be promising if neurologists and vascular people work back to back on this."



I get too excited, :oops: :oops: :oops: and I freely admit I think that it is the cause of MS, but that is not a proven fact at all at this point. It may be that autoimmunity is a part of this picture too. :?

That hasn't been ruled out.

And there is no approved treatment at this point either, except if the person you see has a plan like Cheer's doc does. He's not treating MS at all: he's treating a patient for vascular headache. Tomorrow we'll know what's what! I can't wait!!
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Postby chrishasms » Sun Apr 26, 2009 11:11 am

See that is my fear as well. So a doctor finds something wrong? Will he have a clue what to do to fix it? Is it so specialized only a few people may be able to get it? Is it as simple as a stent and thats it?
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Postby Lyon » Sun Apr 26, 2009 11:31 am

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Last edited by Lyon on Sat Nov 26, 2011 1:30 pm, edited 1 time in total.
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