CCSVI - Pride and Prejudice

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

CCSVI - Pride and Prejudice

Postby malden » Mon May 10, 2010 11:28 am

Anticoagulant (Heparin, Lovenox, Fondaparinux, Arixtra, Warfarin, Coumadin, etc.) and / or antiplatelet (aspirin, Plavix, Progridogrel, etc ...) that are taken after the surgery / intervention of so-called stenosis, daily, long term, are the main causes of short-term improvements of some MS symptoms.

Termination of therapy, MS symptoms are returning. Smart Surgeons that excuse as restenosis.

Also a feeling of warmth in the legs, arms, after intervention attributed to "liberating" the flow of blood in the veins, but this is just a notorious side effect of injection of contrast media - mainly iodine.

Mladen.

(Skeptics and MS-suffer)
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Postby Motiak » Mon May 10, 2010 11:43 am

I guess the best is to list some problems with that thinking:

1. What about patients that didn't have symptoms return after termination of therapy?
2. What about patients who have almost immediate return in symptoms due to a restenosis that have not stopped their therapy?
3. What about patients that still have warmth in their extremities long after iodine would have run its course in the blood stream?

I mean, it's easy to focus on certain cases and make claims like these but you have to look at the whole picture.
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Postby malden » Mon May 10, 2010 12:12 pm

Motiak wrote:I guess the best is to list some problems with that thinking:

1. What about patients that didn't have symptoms return after termination of therapy?
2. What about patients who have almost immediate return in symptoms due to a restenosis that have not stopped their therapy?
3. What about patients that still have warmth in their extremities long after iodine would have run its course in the blood stream?

I mean, it's easy to focus on certain cases and make claims like these but you have to look at the whole picture.


OK....
1. What about that didn't have symptoms return after termination of pulse cortikosteroid therapy (me for example?)
2. What about patients who have almost return in symptoms due to a sometime past (RR MS)?
3. What about patients that have no problems with cold in their extremities but have other MS simtoms (like me?)

That's the another-other part of a whole picture.

Best regards,

M.
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Postby Motiak » Mon May 10, 2010 1:02 pm

I'm not saying CCSVI is the whole answer, I'm simply answering your concerns. As far as your questions:

1. I don't think anti-inflammatory steroids having a beneficial affect on someone with MS symptoms proves or disproves anything about CCSVI. It just shows that the infllammation that is present in MS patients for whatever reason tends to respond well to steroids. Admittedly I could be misunderstanding your question/statement.
2. I don't understand what that sentence means, sorry. Did you mean almost no return or that symptoms returned due to a relapse?
3. I don't have cold feet or hands. I don't think that means proves or disproves the possibility of me having CCSVI though.

We're going to understand more about this as we go along but I believe it will fit together somehow. It's just impossible (for me atleast) to ignore the anecdotal evidence of:

a. The long and short-term relief from symptoms after treatment of CCSVI.
b. The return of symptoms upon the occurence of restenosis.
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Postby AMcG » Mon May 10, 2010 1:15 pm

Hi Malden

If I thought this enquiry was serious I might take the time to reply like Motiak. Have you any citations to support any of this?
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Postby malden » Mon May 10, 2010 1:44 pm

AMcG wrote:Hi Malden

If I thought this enquiry was serious I might take the time to reply like Motiak. Have you any citations to support any of this?


I am monitoring this forum, CCVCI theory, etc, about two months and didnt find any logical reason to support this theory and procedures to my half, still functional part of the brain.

Best regards, M.
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Postby 1eye » Mon May 10, 2010 1:45 pm

This is moot. I felt a similar way, back when I was RRMS, and after that too. I just hope Malden doesn't have to find out. I had the pulse too, and some improvement, that has lasted. But unfortunately I progressed to have other symptoms, and stopped responding to the pulse, or even IV corticosteroids. I guess as Groucho says, Time Wounds All Heels. Still progressing. Mommy, where does SPMS come from? From RRMS, honey.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby ndwannabe » Mon May 10, 2010 2:02 pm

Honestly?

I don't care if CCSVI has anything to do with MS. Just like I don't care if a broken leg / UTI / bronchitis / you name it, has anything to do with MS.

If I find out my veins are blocked, I want them UNblocked, because I refuse to live with blocked veins.

If I break a leg - I want a cast and a mend of my bone. I will insist on getting it fixed even if it does not fix my MS.

And "so-called-stenosis" is not "so-called". It's a medical term and a medical condition.
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Postby AMcG » Mon May 10, 2010 2:36 pm

In my own experience I experienced the warm feet about an hour and a half after I came out of the operating room. Which to me sounds like too late for it to have been the contrast media (it would have been injected 2.5 hours earlier). I still feel warm and there is definitely none in me now. I was not given the anti-coagulants until some hours after the warm feeling so I cannot see how that caused it either.

My own belief is that the warm feelings, temperatue control, sweating, sebaceous secretions, conjunctival secretions, alertness/fatigue control are all carried out in the hypothalamus. Which is right at the base of the brain, exactly where jets of reflux would hit. These are all autonomic functions. Removing the reflux basically turned my autonomic system back on.

The clear-headedness I think is the result of re-oxygenating the brain when normal blood flow resumed coupled with the temperature control afforded by the same flow. I love feeling the sun or wind on my face now. I was out yesterday and it started blowing cold wind. I fastened my jacket up and put my hands in my pockets but my head and face retained a pleasant temperature. It was enervating.

I think the idea that anti-coagulants might have a beneficial effect on CCSVI symptoms is probably correct as it would probably slightly improve flow past an obstruction. But I think my improvements are much greater than could be explained by that. Only time will tell. I can’t do anything strenuous at the moment so I cannot see what happens when I stress my system.

The restenosis thing is easy to explain. In Zamboni’s study the patients who restenosed didn’t know they had. They had a return of symptoms it was only after a second venography that it was found they had restenosed. They were ballooned again and the symptoms went away again
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As soon as I can do some proper exercise (6 weeks?) I will post on the tracking thread.
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Postby malden » Mon May 10, 2010 2:49 pm

ndwannabe wrote:Honestly?

I don't care if CCSVI has anything to do with MS. Just like I don't care if a broken leg / UTI / bronchitis / you name it, has anything to do with MS.

If I find out my veins are blocked, I want them UNblocked, because I refuse to live with blocked veins.

If I break a leg - I want a cast and a mend of my bone. I will insist on getting it fixed even if it does not fix my MS.

And "so-called-stenosis" is not "so-called". It's a medical term and a medical condition.


Ok ...this is your choice, nobody, at least me don't wont to deny your right to choose.

If "somone elese found" my nose is to big, I want them to OPerate, because I refuse to live with big nose.

But I don't think that that will help with my MS symptoms.

M.
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Postby Johnson » Mon May 10, 2010 3:14 pm

Interesting thoughts. But, Putnam tried to treat MS with "blood thinners" in the 1930s, and had little success. Shortly thereafter, it "became" an auto-immune disease - almost by unpopular demand (MS patients were not happy that the blood-thinners did not "cure" their MS).

As AmcG points out, stenosis is stenosis, and that simply is not good for the brain.
My name is not really Johnson. MSed up since 1993
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Postby malden » Mon May 10, 2010 3:19 pm

AMcG wrote:In my own experience I experienced the warm feet about an hour and a half after I came out of the operating room. Which to me sounds like too late for it to have been the contrast media (it would have been injected 2.5 hours earlier). I still feel warm and there is definitely none in me now. I was not given the anti-coagulants until some hours after the warm feeling so I cannot see how that caused it either.

My own belief is that the warm feelings, temperatue control, sweating, sebaceous secretions, conjunctival secretions, alertness/fatigue control are all carried out in the hypothalamus. Which is right at the base of the brain, exactly where jets of reflux would hit. These are all autonomic functions. Removing the reflux basically turned my autonomic system back on.

The clear-headedness I think is the result of re-oxygenating the brain when normal blood flow resumed coupled with the temperature control afforded by the same flow. I love feeling the sun or wind on my face now. I was out yesterday and it started blowing cold wind. I fastened my jacket up and put my hands in my pockets but my head and face retained a pleasant temperature. It was enervating.

I think the idea that anti-coagulants might have a beneficial effect on CCSVI symptoms is probably correct as it would probably slightly improve flow past an obstruction. But I think my improvements are much greater than could be explained by that. Only time will tell. I can’t do anything strenuous at the moment so I cannot see what happens when I stress my system.

The restenosis thing is easy to explain. In Zamboni’s study the patients who restenosed didn’t know they had. They had a return of symptoms it was only after a second venography that it was found they had restenosed. They were ballooned again and the symptoms went away again
.
As soon as I can do some proper exercise (6 weeks?) I will post on the tracking thread.


Glad that you have your theory on every issue, and no doubt at all. I am just opposite, your theories dont satisfied my MS demaged brain, I can't help myself, but it's opposite to all my living and academic experience and I can't except it.

M.
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Postby malden » Mon May 10, 2010 3:28 pm

Johnson wrote:...Putnam tried to treat MS with "blood thinners" in the 1930s, and had little success...


Some help on references on his work... I didn't find any.

M.
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Postby Johnson » Mon May 10, 2010 3:43 pm

Malden wrote:
Johnson wrote:...Putnam tried to treat MS with "blood thinners" in the 1930s, and had little success...


Some help on references on his work... I didn't find any.

M.

Do a search on this forum - this is where I was informed.
My name is not really Johnson. MSed up since 1993
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Postby bluesky63 » Mon May 10, 2010 3:57 pm

Hi there. I am not thinking well these days (holes in the brain, etc.) but if I am following this properly it sounds like you are suggesting that it's possible that the improvement from the liberation procedure could be from some other element of the procedure besides ballooning or stents -- perhaps the contrast, perhaps the anticoagulants, perhaps the hospital experience, etc.

It's an intriguing thought, and I've wondered the same thing. Just like I sometimes wondered if people who took the ABCR's might actually experience improvement from the NSAIDs that they usually take along with the shots, instead of from the shots themselves.

Some things that make this less likely with CCSVI:

*Protocol on anticoagulation has varied widely, from none to a little aspirin to minimal to injections to months of serious stuff, and yet the results seem the same across the board.

*People with MS have contrast procedures all the time, and it does seem like someone would have noticed improvement from this by now. I have personally had contrast with no effects on my MS and definitely no improvements like what I've read about. But this is where a central database would be wonderful, to really gather all the possible variables.

*People with MS also go on anticoagulants and have catheter procedures. Again, such a common thing -- certainly there should have been some observation of improvement. I have had two catheter procedures for tachycardia followed by mild anticoagulation for three months and there was no improvement in my MS. Tachycardia improvement, yes; MS, no.

But it's a great question, and very logical. Sometimes something simple and incidental turns out to be really important.

But in the end, of course, as others have already said, a blocked vein in a vital organ just seems like bad news from sheer logic. How much data do we need to decide to open up the blockage and give the brain some oxygen?
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