small-scale Putnam replication?

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

Postby mshusband » Tue May 25, 2010 7:56 am

NO ... you need surgery for the main veins ... they take so much blood flow that the body will never be able to replicate them.

You were talking about SMALL SMALL veins in the brain ... less than 1/100th of a mm in diameter. THOSE the body can reproduce. Those it would be IMPOSSIBLE to perform surgery on.
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 3:00 pm
Location: Pittsburgh, PA, USA

Advertisement

Postby AMcG » Tue May 25, 2010 8:03 am

This article talks about cognitive impairment because the venules they occluded were draining the cortex, which is supposedly where ‘thinking’ occurs. If you occlude venules draining the thalamus or hypothalamus then you should get impairments to sensory signalling, autonomic functions, arousal, wakefulness, muscle-tone, venous tone etc. Which you do get in MS. In particular Zamboni and Zivadinov both seem to be interested in the Pulvinar nuclei in the Thalamus

I agree that damage to the vessels draining this area would tend to be repaired. But the question would be how fast the repair work would be compared to the how quickly fresh damage occurred. It would be a race between the two. Another crucial question is: was the time between the damage being done and the subsequent repair long enough for the hypoxia to damage adjacent myelin? The net impairment might be very slight to begin with but could steadily build up. I think this fits with the usual slow and episodic progress of the disease.

Sbr487 said that Drs see blood flow restoration immediately after opening the veins. I have not heard of anyone measuring blood flow in the brain immediately after. Have you a reference to this? My Drs checked the blood flow in my jugulars immediately after but that is not the same thing.
User avatar
AMcG
Family Elder
 
Posts: 205
Joined: Thu Dec 31, 2009 3:00 pm
Location: UK

Postby Cece » Tue May 25, 2010 8:10 am

Even the vertical veins are too small for venoplasty procedures to be done on them and they are much larger than venules; there have been people here with vertical vein occlusions that aren't able to get them treated.

I think some of the value of the article is that it is an animal study looking into what happens to the brain when venous outflow is blocked. Because it's examining it on a tiny tiny level, we have to extrapolate the conclusions to what would happen on a macro level (such as the large jugulars and azygous). It's not perfect, it's not full-scale Putnam replication in the jugulars over longer time, but it's still something.

The author of the research, Nguyen, is actually a doctoral student, working towards his Ph.d. who innovated this new way of using lasers/optics to create micro blockages. This lab, under a Dr. Shaffer, at Cornell is looking into the impact of blood flow on neurodegenerative diseases.

And thanks Bill & AMcG :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Billmeik » Tue May 25, 2010 8:19 am

Your point isn't necessarily valid.


I think by this you're saying this isn't ccsvi proven, but it's a very valid point in that it shows outflow blockages that create lesions. Not the science we need but close.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

Postby belsadie » Thu May 27, 2010 11:53 am

May I suggest that we all stop trying to explain the complexities that have been hidden for years. We just might be fulfilling the silent hopes of the neuros who dismiss the findings we're so excited about as nonsense....
Dr. S has intimated that we are, indeed, at the beginning of this discovery.
It's our job to fight for the right to further research ALL the implications of CCSVI and not to allow "them" to divide and conquer.
Don't get me wrong, I enjoy a good stimulating banter as well as the next guy, but let's use our energy to demand our right to the fruits of those designated to reveal the truths . [can you tell my Dad was a uni0n organizer?]
We're all finally empowered to act as a unit.Let's all find a way to play nice in the sandbox......
User avatar
belsadie
Family Elder
 
Posts: 106
Joined: Sun Mar 28, 2010 2:00 pm

Treat the symptom

Postby MarkW » Fri May 28, 2010 12:11 pm

Belsadie,
I fully agree with your point of May 27:
May I suggest that we all stop trying to explain the complexities that have been hidden for years. We just might be fulfilling the silent hopes of the neuros who dismiss the findings we're so excited about as nonsense....

On May 23 I wrote:
Unfortunately opinions on this chatroom get treated as facts. They are repeated to Neurologists, who laugh at CCSVI. The good research work being done is lost in the noise of discussion. Sad because this actually hinders the case for CCSVI.

I hope more people will appreciate that we do not need to explain CCSVI to argue it is our right to have it treated.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Postby Cece » Fri May 28, 2010 5:14 pm

I think the neuro's resistance is a thing unto itself: not caused by whether we explain CCSVI perfectly or not or add mistaken embellishments. They were going to laugh anyway.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Billmeik » Sat May 29, 2010 9:32 am

May I suggest that we all stop trying to explain the complexities that have been hidden for years. We just might be fulfilling the silent hopes of the neuros who dismiss the findings we're so excited about as nonsense....

On May 23 I wrote:
Unfortunately opinions on this chatroom get treated as facts. They are repeated to Neurologists, who laugh at CCSVI. The good research work being done is lost in the noise of discussion. Sad because this actually hinders the case for CCSVI.

I hope more people will appreciate that we do not need to explain CCSVI to argue it is our right to have it treated.


this anti thought angle reminds me of the 90's when patients were encouraged to be passive recipients of the high knowledges passed down from their docs. It is totally misplaced in 2010. Dont see if you've noticed but neuros just do what the pharmas tell them because all ms science today is paid for by the pharmas. They are completely useless when the answer isn't a potion and indeed are blocking progress quite significantly.

I find your 'don't think' point, as voiced on a few threads to be cloying at best sometimes downright annoying. CCSVI probably would have languished on the sidelines for decades if it wasnt for thinking, assertive patients and their mates like cheerleader. Yes try to understand. Yes don't just parrot anti-intellectual slogans from docs who don't want challenge.

And yes some of the things we patients will say are absurd and totally misplaced. Just like we weren't trained docs. But yes, some of the things docs will say are absurd and totally misplaced. Just like they had never had ms and their pov is totally skewed by a system paid for and researched by big pharma.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

Think Think Think

Postby MarkW » Sat May 29, 2010 12:25 pm

Hello Billmeik,
Please withdraw your assertion that I am encouraging people to 'don't think' which you wrote.
I want people to think and understand, rather than always trying to explain the complexities of CCSVI and MS, often incorrectly.
My message is very simple:
I am not able to explain CCSVI and MS in full. Can anyone yet ? However, pwMS must be allowed to try de-stenosis if they wish to and understand the risks.
You may not accept my view, which is "unproven statements about CCSVI damage the case for CCSVI in the eyes of open minded scientists/medics". My experience tells me to stick to facts and not engage in speculation. Also don't fight battles which don't need winning,
for example, fighting pharma might entertain you but what does CCSVI gain by doing it ?

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Postby Cece » Sat May 29, 2010 4:05 pm

I think in many ways we are here for support, emotionally and intellectually. Four years ago, when I was first diagnosed, this is the place where I found the best information, which was what I needed to work through the emotions. So for some of us, playing with the complexities is helpful and enjoyable. (I try to put "I think" and "the theory is" and "maybe" qualifiers on pretty much every post I write!) I spent four years with "autoimmune MS" to which none of the explanations really clicked and none of the many facts (LDN helps, smoking hurts, copaxone works by mysterious ways, that island that had an MS epidemic, etc) fit together to form a picture unless we are talking a Pollock. And now...it all keeps fitting.

All of CCSVI is an unproven theory, when you think about it, and we're still talking about that.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Trish317 » Sat May 29, 2010 4:12 pm

Cece wrote:I think in many ways we are here for support, emotionally and intellectually. Four years ago, when I was first diagnosed, this is the place where I found the best information, which was what I needed to work through the emotions. So for some of us, playing with the complexities is helpful and enjoyable. (I try to put "I think" and "the theory is" and "maybe" qualifiers on pretty much every post I write!) I spent four years with "autoimmune MS" to which none of the explanations really clicked and none of the many facts (LDN helps, smoking hurts, copaxone works by mysterious ways, that island that had an MS epidemic, etc) fit together to form a picture unless we are talking a Pollock. And now...it all keeps fitting.

All of CCSVI is an unproven theory, when you think about it, and we're still talking about that.


For me, it keeps going back to the fact that NO ONE knows what causes MS, and EVERY form of treatment for it is unproven theory. So, why NOT CCSVI?
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

Postby Cece » Sat May 29, 2010 4:28 pm

Trish317 wrote:For me, it keeps going back to the fact that NO ONE knows what causes MS, and EVERY form of treatment for it is unproven theory. So, why NOT CCSVI?

Exactly...and it's not like the treatments are uber-effective, with low risks and side effects, either.

Trish, I hope your darling man knows what a gem and a fighter he has in you.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Trish317 » Sat May 29, 2010 5:07 pm

Cece wrote:
Trish317 wrote:For me, it keeps going back to the fact that NO ONE knows what causes MS, and EVERY form of treatment for it is unproven theory. So, why NOT CCSVI?

Exactly...and it's not like the treatments are uber-effective, with low risks and side effects, either.

Trish, I hope your darling man knows what a gem and a fighter he has in you.


Awww, thank you, Cece! He's told me I'm "special", "amazing", and "remarkable". I've told him, I'm just a woman who loves a man. I'd pull the moon and the stars out of the sky for him, if I could.

Something I should have said before....I'm not the special, amazing, remarkable one. My darling man is....and so are all of you battling this horrible, insidious disease. You have my utmost respect and admiration. I'm very blessed to be learning from all of you because it helps me to help him.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 2:00 pm
Location: Rhode Island

MS cause is unknown after 100 years of investigation

Postby MarkW » Sun May 30, 2010 12:26 pm

Trish317 wrote:
For me, it keeps going back to the fact that NO ONE knows what causes MS, and EVERY form of treatment for it is unproven theory. So, why NOT CCSVI?

I agree wholeheartedly. This is why the scientist in me get annoyed when people try to explain MS and CCSVI on this chatroom.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: mystery1980, Robnl


Contact us | Terms of Service