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

Postby cheerleader » Thu Sep 17, 2009 7:34 pm

Aimspro...puleeze.
We have a new paradigm, gentleman! It's called hypoxic injury and iron deposition- but I have an idea for all the stock holders of immuno-modulating drugs!
The latest autoimmune disease....we can repackage those wonderful drugs and sell them to STROKE VICTIMS!!!

Abstract

Lymphocytes, neutrophils and macrophages are found in the brain in areas of acute ischaemic stroke. The percentages of activated T cells and regulatory T cells were significantly increased in patients with ischemic stroke compared to healthy subjects and patients with OND. There was also an increase in the percentage of CCR7+ T cells. There were no significant differences in the activation of other cell types. In conclusion, there is evidence of immune activation and Treg cells in acute ischaemic stroke.

http://linkinghub.elsevier.com/retrieve ... 2808004578

or maybe we can just stop the reflux of blood into the brain.


:lol: :lol: :lol:

Dr. Dake and other universities will be doing blinded studies in the coming months...but I'm thankful my hubby got his jugulars fixed.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Thu Sep 17, 2009 8:41 pm

123
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Postby Jamie » Thu Sep 17, 2009 9:14 pm

That's my point cheer!

The argument is important and we're not going away.

However, from a 100% selfish point of view whilst all the trials happen I'm delighted that we got Mel in and 'fixed' when we did.
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Postby scorpion » Fri Sep 18, 2009 3:59 am

You know sometimes CCSVI seems more like some type of political movement then a "potential" treatment for MS. Was it George W. who said "you are either with us or against us"? I must admit I have not had time to sit down and look at all of the info. from the recent conference but has ANYBODY seen any change on MRI?? I know, I know, MRI is not the end all and be all of measuring disability but it HAS shown changes in treatments such as Revimmune.
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Postby whyRwehere » Fri Sep 18, 2009 4:21 am

Scorpion, you should read Cheer's post on lesions and SWI, as relates to MRIs. I don't think it is a matter of converting every Joe out there, it's more a matter of giving each person the story so they can decide for themselves. Some people can't be bothered to go farther then mention it to their neurologist, while others will make their way to intervention...and it seems to be looking very good for that second group of people...I don't think they care if the MRi changes if they feel better, it would only be to please people who need to see a changed MRI.
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Postby bestadmom » Fri Sep 18, 2009 4:34 am

The diagnostics tests that are going on right now to support or refute Zamboni's findings that everyone with MS has stenosis will be the first step in the right direction.

Not everyone in the US has the money, the insurance or the wherewithall to jump on a plane to go to Stanford. If stenosis is statistically proven, which I think it will be in the next few months, the next step will be training for diagnostics and then concurring on surgery methods.

With malpractice being what it is in the US, I can't see the average interventional radiologist and vascular surgeon jumping on the bandwagon until they have statistical proof and an agreed-upon surgery method.

Dr. Dake is a leader, and is learning and changing his methods with each surgery. Most doctors and people are followers. I don't think this is a matter of being with us or against us, it will take on a life of its own when the time is right. In the meantime, if we continue to prime the pump, those doctors that know about CCSVI and have read the research will be ahead of the curve.
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Postby MaggieMae » Fri Sep 18, 2009 4:44 am

cheerleader wrote:Dr. Dake and other universities will be doing blinded studies in the coming months...but I'm thankful my hubby got his jugulars fixed.
cheer


Cheer - Does that mean that those of us who are still trying to get our appointment with Dr. Dake, will not be seen for treatment because he will be doing these studies?
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Postby Rokkit » Fri Sep 18, 2009 6:25 am

scorpion wrote:You know sometimes CCSVI seems more like some type of political movement then a "potential" treatment for MS. Was it George W. who said "you are either with us or against us"? I must admit I have not had time to sit down and look at all of the info. from the recent conference but has ANYBODY seen any change on MRI?? I know, I know, MRI is not the end all and be all of measuring disability but it HAS shown changes in treatments such as Revimmune.


cheerleader wrote:Dr. Fabrizio Salvi- Head neurologist at the University of Bologna spoke of his clinical observations as a neuruologist working with the CCSVI paradigm for three years. He told us that in 500MS patients he has tested now, 100% have CCSVI. He stated the doppler is a wonderful tool of diagnosis and their needs to be training in the technique. He has a hypothesis as to why there are different varieties of screening in high risk subjects- because prognosis is related to the type of malformation. He wants to answer the question if the Liberation procedure is a disease modifying treatment in MS. He will give proof tomorrow that there is plasticity and remyelination in the CNS and the Liberation procedure have proven to activate remyelination in the CNS as shown by MRI.


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Postby Ernst » Fri Sep 18, 2009 7:10 am

Small (or maybe big) victory for CCSVI in Finland - there was article about ccsvi in ms-magazine, written by one of our top neuro. The headline was:
"vein problems - the cause or consequence of ms?" I was quite happy to see the article.
I found at least one thing that was maybe mistake: the writer borrowed some german study about iron stores --> that iron stores are similar in rr and progressive ms, in brain. Didn't Haacke say that more iron --> worse disease? Or differences with rr, sp or pp?

You can find article here:
http://www.ms-liitto.fi/files/4783/52009_tutkimusavain.pdf

Its in finnish - so you don't get much of it.. or maybe with google translator..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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venous problems

Postby GiCi » Fri Sep 18, 2009 8:41 am

mrodhes40,
Your comments are spot on. The venous obstructions should be treated indipendently from believing or not that they are the cause of MS. A patent vessel has to be better than an ostructed one: this is not only logic but it is also the medical experience we have so far. In addition venoplasty procedures are, I believe, covered by insurance.
The real problem is how to convince the medics to diagnose it.
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Postby radeck » Fri Sep 18, 2009 8:56 am

Great news, Ernst! The most important thing is that neurologists take notice of the work Zamboni and others have done/are doing and make up their own minds about it. The more this happens, the more truth will eventually prevail.
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Postby mrhodes40 » Fri Sep 18, 2009 9:38 am

I said
But to what degree is it a vascular problem that deserves treatment in its own right? This is an identified severe occlusion in the venous drainage of the head, a head that holds a brain that is struggling with MS BTW, it just seems logical to go ahead and treat that and let the "Causes MS or not" chips fall where they may, feeling confident that on basic physiological principles you have given the brain the best chance for good circulation and thus have maximized the chances for healing.

So far only Dr Dake has been willing to look at the problem that way. Others have insisted on looking at "I don't see that we have proof that this causes MS yet" angle and ignoring the elephant in the room: verified compromised circulation (here I am talking about the tested person with venous abnormality) as if it is totally fine to leave circulation compromised while they have their academic debate about MS causation.



and continued with questions of Gici
Just curious: You are not impressed that addressing the circulation itself for its own sake is a good enough argument to make to people and that some might be persuaded by that alone?

The logic that returning good circulation is helpful for its own sake is not persuasive? Would it have been persuasive to you before at all?

Do vascular doctors then only treat diseases and never circulation ITSELF?

My standpoint has been that we do not know if it helps MS but why can't we treat the stenosis for its own sake? I am just asking, curious, because it seems logical.

Because if a doc was in a chest of a person with heart disease in general and found a vessel with a 90% blockage and collateral circulation he would treat it even if that vein would not directly impact the heart itself wouldn't he? No one would question that would they?

I guess that is my deal, I think vascular doctors treat circulation not other diseases necessarily, therefore treating the stenosis seems only ordinary, but maybe that is wrong.



and his answer has come...Thanks Gici!

Your comments are spot on. The venous obstructions should be treated indipendently from believing or not that they are the cause of MS. A patent vessel has to be better than an ostructed one: this is not only logic but it is also the medical experience we have so far. In addition venoplasty procedures are, I believe, covered by insurance.


regarding the "medical experience we have so far" I think that what you were saying is that it is known in medicine that improving circulation is already known to be beneficial This is a basic principle of medicine:normal circulation is vital for normal function.

This is the core basis for my feeling so positive about this even though the research is unclear at this point about the extent to which treatment may help...there is a basic principle in question here, ignore the circulation at your own risk... it is REASONABLE to expect at the minimum some benefit from restored circulation and reasonable to expect some negative outcome if such circulation issues are ignored.

Stenoses are not benign.

The comment that venoplasty is covered by insurance is in support of the idea it is standard of practice I believe. The insurance companies cover repair of stenosis (often as long as it is in excess of 50%) because they know it is the medically necessary thing to do.

So the main argument for getting at the minimum assessment and hopefully treatment at this point has to be circulation centered because such a point of view should be considered reasonable....

although the further issue of the location of many of these jugular stenoses, very high in the head, and the concern regarding safety of procedures in that area will not be taken lightly and will continue to be a roadblock until there is clarity about safety.

If I was in charge of the world, 8) I would like to see the specialties of vascular surgery and interventional radiology speak up on this-look into making a policy statement -- and I'd have them state that treatment for the sake of restoring circulation is reasonable, rather than having them sit back and wait for the neuro research community to finish their debate.

it is hard waiting, but man, really, only 10 months since the December paper!! :lol:
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 Loobie » Fri Sep 18, 2009 11:01 am

What happened to my post? I made a post before bed last night on this thread that was like ten paragraphs long! And for the first time, it didn't take! Oh well.

And Scorps. We will never see anything different on my MRI. I'm at 4 on the EDSS and there are no visible lesions, but rather abnormalities in certain areas. So, for me anyway, I'm not going to show anything but, hopefully, clinical improvements. No way is this an us against them situation. I don't know if I can recall anyone trying to 'convince' me to do this. Granted we've bantered about with all the things it has going for it and focus on those, but like I said in my huge post that didn't take last night, the drugs, regardless of the statistics, were allowing me to relapse. I want something that will not allow relapse. On what level does that make sense? "The stats show reduced relapse rate and better MRI's". I relapsed on Avonex, Tysabri, and Tovaxin. So to me they are useless. I believe, but I can't provide the link, that correcting the stenosis was basically turning relapses on and off. Nothing else has shown that. While I'm SP and don't have marked attacks anymore, I was having very heightened periods of disease activity; and I can't take one more period of that and stay on my feet. So for me, it was that which made my mind up. All that money I spent on those drugs and I just kept getting worse, so it wasn't a GWB type of thing. I felt it was the only thing I could try. I couldn't get my hands on Campath, which I think is showing good results, because I was SP.

That's where all the money should be spent if you ask me. On people who are really struggling. It almost seems like once you trip over to progressive, the medical community is not concerned anymore, 'there's nothing we can do'. But this, once again you're right 'according to testimonial', this is showing stuff for progressive patients. That's it. I won't twist anyone's arms to do this but rather point them to the papers and stuff. If they want to do it, it's up to them.
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Postby radeck » Fri Sep 18, 2009 11:09 am

redundant post - removed
Last edited by radeck on Sat Dec 19, 2009 5:13 pm, edited 4 times in total.
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Postby cheerleader » Fri Sep 18, 2009 11:14 am

Loobie wrote:
That's where all the money should be spent if you ask me. On people who are really struggling. It almost seems like once you trip over to progressive, the medical community is not concerned anymore, 'there's nothing we can do'. But this, once again you're right 'according to testimonial', this is showing stuff for progressive patients. That's it. I won't twist anyone's arms to do this but rather point them to the papers and stuff. If they want to do it, it's up to them.


This is a terrific point, Lew. Why doesn't anything in the current arsenol work for progressive patients? Wouldn't those be the people to help? Maybe because what the medications are addressing - rogue t and b cells and inflammation- isn't what is causing the damage in MS.

Please read the thread on SWI and lesions and look into Dr. Mark Haacke's research, Bob and Scorpion and anyone else who is dubious. Dr. Haacke found that the only measurements which correlated with DISEASE PROGRESSION were iron deposition and hypoxia in brain tissue. The longer disease duration, worse the disability, the more iron and hypoxic death in the brain. period. Not hyperintense lesions. Hyperintense lesions have no correlation to disease progression. Which is why my Jeff had 20 lesions and could mountain bike, and some folks are wheelchair-bound with one lesion.

Lew...try to find your missive on your computer...maybe it got misfiled. I'd love to read it!
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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