Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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mrhodes40
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Post by mrhodes40 » Fri Mar 27, 2009 10:44 am

Three cheers for Marie for the longest post ever!!
:lol: thank you, I'm glad it is helpful and not only boring.
if he wants to be famous
Now you're talking! :wink:

But seriously that's what we want: a lot of people who want to publish would be good for all of us.

The more the better.

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peekaboo
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Post by peekaboo » Fri Mar 27, 2009 11:32 am

I would like to ride the coat tails of Loobie, who wrote an eloquent response to U guys.

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lyndacarol
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Neurology subspecialty?

Post by lyndacarol » Fri Mar 27, 2009 12:25 pm

Recently I read a couple articles (although I cannot remember where) by doctors who were identified as "vascular neurologist" -- I don't know what credentials are required for this designation; maybe this type of specialist would be appropriate for looking into Zamboni's hypothesis in our particular cases?

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mrhodes40
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Post by mrhodes40 » Fri Mar 27, 2009 2:46 pm

Neuro vascular specialists/nd or surgeons treat things like neurovascular headaches, strokes, TIA (transent ischemic attacks), aneurism etc. They might end up being a good choice, or maybe it will be cardio vascular surgeons that are the best.

The reason is that the place where the veins is stenosed or plugged up is in the CHEST the azygous and jugulars are neck/chest things not head things. It backs all the way up to the brain, but the problem and the repair is in the chest. The repairs are also like what you do for a heart problem, a stent or a balloon is a commonly done thing in the cardiovascular clinic.

I don't think there'll be much for them to do in the brain which is lucky ducky for us cause that's hard to do!

My guess is that if this ends up being well shown, there'll be a bit of competition to see who is deemed the proper "specialty" and who develops the specific skills needed for this repair and starts advertising Multiple sclerosis CCSVI specialist!

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peekaboo
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Post by peekaboo » Fri Mar 27, 2009 3:12 pm

I'm on the band wagon!!! aka....sign me up

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pinpricks
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Post by pinpricks » Mon Mar 30, 2009 11:30 am

Interesting tread. Difficult to understand from a newbie ...
Understand that 100% MS have a venous problem (blockage?).
I bump it ... :wink:
----
Just to say that MS share many things with ME (CFS, Chronic Fatigue Syndrome).
They found out that in ME the brain blood flow is poor and there is inflammatory lesion ...

http://www.cfs-ireland.org/scientific/10.htm#2

Exercise worsen the problem after 24/72 H and you don't return to what it was before.
It looks like both have blood circulation problem ....

Just read this MS and ME
http://www.ahummingbirdsguide.com/mevsm ... dified.htm

Take care[/url][/u]

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cheerleader
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Post by cheerleader » Mon Mar 30, 2009 5:10 pm

Thanks for the info, Pinpricks.
I did not realize how many symptoms Chronic Fatigue Syndrome (ME) and MS shared. The oligoclonal bands of MS are one differential, as are the size of lesions, reaction to heat and evoked potential testing. Here's a good breakdown of the differences:
CFS vs. MS

Circulation is compromised in CFS. Would be interesting to see if there is a venous component to CFS.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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mrhodes40
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Post by mrhodes40 » Mon Mar 30, 2009 5:31 pm

I have a feeling that Zamboni's work is going to make diagnosis a lot easier eventually. NO MORE "is it lyme?" or "is it CFS" etc. That will be great for people, both MS and other diseases.

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pinpricks
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Post by pinpricks » Mon Mar 30, 2009 6:10 pm

I realize that 3 groups are sharing many symptoms.

MS
CFS (ME)
BFS (Benign Fasciculation Syndrome)
The last one is called "benign" because there is no REAL studies done but they have some symptoms of ME and MS as Mainly Twitching and some paresthesia + stiffness + exercise intolerance.
May be we can say that ME could be a "super set", MS included in it and BFS included in MS (kind of "benign" MS, you have one episode and nothing more for years ..).

Take care.

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marcstck
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Post by marcstck » Mon Mar 30, 2009 11:13 pm

I forwarded the Italian paper on to Dr. Peter Calabresi at Johns Hopkins, one of the top two or three MS guys in the United States. Here is the rather short response he sent me today:
Most of us do NOT think venous pathology causes the MS, but rather may be a result of the plaques and scar tissue. The authors also say the same at the end of that article.
In addition to being a brilliant researcher and clinician, Dr. Calabresi is a hell of a nice guy. It would be nice, though, if he could figure out just what the hell is wrong with me...

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DIM
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Post by DIM » Tue Mar 31, 2009 1:15 am

"The authors also say the same at the end of that article"
I believe authors say they don't know if MS causes venus abnormalities or the opposite!

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sou
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Post by sou » Tue Mar 31, 2009 4:06 am

Most of us do NOT think venous pathology causes the MS, but rather may be a result of the plaques and scar tissue. The authors also say the same at the end of that article.
But how can inflammation and damage deep inside the brain cause stenoses "miles" away, outside the skull and the spine? If that is correct, inflammation at the thighs could very well lead to stenoses of the coronary arteries an lead to instant death.

sou

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AndrewKFletcher
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Post by AndrewKFletcher » Tue Mar 31, 2009 4:12 am

I'm a nice guy too. And believe I have figured out how pressures change and how circulation changes with postural manipulation. Tilting a bed to five degrees head up has brought about some convincing changes in varicose veins and multiple sclerosis.

Waiting patiently for people to test this simple therapy by raising the head end ot the bed 6-8 inches depending on the length of the bed.

Neurologists are not going to give up the game without a fight.


marcstck wrote:I forwarded the Italian paper on to Dr. Peter Calabresi at Johns Hopkins, one of the top two or three MS guys in the United States. Here is the rather short response he sent me today:
Most of us do NOT think venous pathology causes the MS, but rather may be a result of the plaques and scar tissue. The authors also say the same at the end of that article.
In addition to being a brilliant researcher and clinician, Dr. Calabresi is a hell of a nice guy. It would be nice, though, if he could figure out just what the hell is wrong with me...

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cheerleader
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Post by cheerleader » Tue Mar 31, 2009 6:17 am

Moreover, the absence of Doppler and venographic features of CCSVI in controls suggests that venous obstructions may be causative of MS rather than a coincidental finding.

Interestingly, similar venous stenoses considered to be congenital
malformations have been described in other human diseases, i.e.,
membranous obstruction of the inferior vena cava and a minor group of
chronic venous diseases of the lower limbs.27-28 Such venous obstruction
brings about an insufficient venous drainage, respectively at the level of the liver and of the cutaneous tissue, subsequently causing inflammation,
sclerosis, and degenerative lesions.24-25,36 In contrast with the malformation hypothesis, cases have been reported of white cell infiltration and endophlebohypertrophy in venous valves where
endocarditis is present.37
Even though this correlation has never been studied in MS, reports of
valvulitis in the course of significant inflammatory disease should certainly be taken into consideration since they support the hypothesis that these
malformations are a result of CDMS rather than a cause. However, if vessel abnormalities were due to an inflammatory-autoimmune disease, they would be less frequent in patients treated with immunomodulating/immunosuppressant agents. On the contrary, our analysis in the RR-SP group did not demonstrate an increased number of extracranial venous stenosing lesions in untreated as compared to treated patients.
Dr. Calebresi may be a nice guy, but he didn't read the conclusion thoroughly. Here is the conclusion. Let's read it for ourselves. Zamboni does not agree with your doctor, Marc. On the contrary, he make the point that if the demyelinating lesions were creating the venous obstructions, those patients on immune modulating medicine would NOT have as many stenoses. (Their inflammation and lesions would, having been dampened, create less venous obstruction.) BUT, the opposite is true. Venous obstruction was found in only MS patients, no matter how they were being treated.

Neuros will not consider this as causative. Pure and simple. It creates cognitive dissonance (Thanks for that, Marie) It goes against all they have been taught and learned.

Vascular doctors get this. The head of Stanford (also a nice guy) is excited to look for this. He understands how venous disease has affected his heart and liver patients. Vascular doctors have seem the damage to internal organs wrought by venous varix, stenosis and reflux. I agree, more research needs to be done. My hubby is a willing guinea pig. Anyone else? Arguing the validity of this research on the web will only get us so far.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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pinpricks
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Post by pinpricks » Tue Mar 31, 2009 10:06 am

I agree.
The conclusion is not what it is said.
Anyway, how a problem in the brain could do such thing far away as "sou" said???
I was locking to ME patients and they find there is this type of problem but in the vessels of the brain itself.

Take care.

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