CCSVI Neutral or Critical Perspectives

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

Postby Lyon » Fri Aug 06, 2010 7:04 pm

.
Last edited by Lyon on Sun Nov 20, 2011 7:21 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Advertisement

Postby cheerleader » Fri Aug 06, 2010 8:45 pm

It was Dr. Byung B. Lee of Georgetown University that make the connection to Budd Chiari at the Bologna conference. He was one of the first doctors to perform a liver transplant, and considered the leading expert in truncular venous malformations. His comments are in my notes from last September.

Here's his paper on the topic:
http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5029
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby cheerleader » Fri Aug 06, 2010 8:57 pm

Here are my notes from the Bologna conference and Dr. Lee's presentation. They are linked in the research sticky, and were placed on the CCSVI forum last September by Marie. This will be long, so skip if you're not interested in venous malformations:

http://www.thisisms.com/ftopict-8105.html

Byung B. Lee- Georgetown University School of Medicine, Washington-Embryology of the venous system and origin of truncular venous malformations

Dr. Lee began as a transplant surgeon and admitted that his first liver transplant was a disaster. He learned the hard way that the vena cava is not just a single trunk....and venous malformation was a most fearful thing, and a nightmare to a transplant surgeon.

"We doctors have a tendency to specialize in our narrow fields...but I want to appeal to all of us to take a bird’s eyeview. We need to look at the whole picture. We now understand the lower venous system, but it has taken us much too long to bring this knowledge all the way up to the neck and all the way to the junction of the superior vena cava.

Vascular malformations are from embryological defective vessels involved in the later stages of embriogenesis. CVM can develop anywhere in the vascular system as a birth defect. The vascular malformation is one of the CVMS which affects mainly the venous system. There is much we do not know, and we do not know how much we do not know."

Two classifications of venous malformations:
Extratruncular- this is formed by embryonic tissue remnant which carries a risk of growth, because it is mesynchymal. When stimulated by hormones, pregnancy, etc, it can reactivate and grow.

Truncular VM- this is formed as part of the later stage of embryonic development. This form does not have mesencymal cell characteristics. Truncular lesions present as a fetal remnant- such as sciatic veins or superior vena cava malformations

We cannot stop investigating at the neck in CCSVI! We need to investigate all the way down to the superior vena cava.

Truncular venous malformation lesions are obstructive of dilated lesions: such as we see in IJV aneurisms or iliac vein stenosis. They are more serious to direct involvement of the venous system, and will bring about hemodynamic issues. Why has the jugular been ignored previously? Chronic venous congestions leaves more damage along its related organ or tissue. Venous congestion of the IJV is related to ischemia.

The cardio system is the first system to develop in an embryo. At 15-16 days from gestation, there is a primitive vascular system. Veins are so important, that God made them in pairs- to overcome any defects. They are more important than arteries.

The IJVs are the dominant deep vein to drain the brain. Below the diaphragm, the veins converge, and problems can also arise there. Dr. Lee couldn't repair the IVC after taking the liver out of his patient, because of stenosied veins. Often, the liver is the victim - such as Budd Chiari syndrome.

Dr. Frohman asks Dr. Lee-
Why the latency for onset of MS compared to other VM disease?

Dr. Lee states that some cases of Budd Chiari are diagnosed at age 30, not all are pediatric. It depends on the level of vena cava obstruction. It is too late to repair by the time they do a liver biopsy. The venous system is not like the atrial system- extra pressure makes it very vulnerable. Acute venous hypertension is easy to find and obvious, but this is not the issue...it is the slower progress such as CCSVI...what we do not know is what we do not know.

Another doctor asks-
Is there any evidence in the literature if there are potential environmental influences on the mother which might affect VMs?

Dr Lee states that the current embryology knowledge we use today was established in 1890-1920s. There is no known connection to venous system and environmental influences....yet. There needs to be more research.

VMs show up and most of them come back. Because certain malformations have those mesynchymal cells, they reactivate in tuncular venous malformations.

Neonatal surgery is finally catching up to the pace, and in 5-10 years, a neonatal surgeon may understand the implication of VMs.

Dr. Frohman asks: Looking at Budd Chiari in the hepatic system, is there anything analogous to MS?

Dr. Lee....yes, Budd Chiari shows up primarily in Caucasians. This is part of the reason Dr. Lee believes the evidence points towards a congenital cause of venous congestion.


Hope this is helpful,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5029
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby 1eye » Fri Aug 06, 2010 10:02 pm

Lots of different VMs can happen, from CCSVI, to Budd Chiari, to May Thurner, to an extra chamber of the heart. People like me who have them have loads of adaptations that happen over a lifetime, as needed (probably more needed when I was cycling cross-country at the age of 20 than now). Collateral veins come in weird bunches, it seems. There are webs, membranes, malformed valves, missing veins, etc. I don't see what's the big deal over some radiologists using Doppler to 'prove' no connection to MS exists or CCSVI doesn't. To be honest, I couldn't care less, and the fluoroscope and ink will be enough proof for me.

Dr. Haacke does more than explain diagnosis of jugular and azygous stenoses. He goes into looking for May Thurner and Budd-Chiari. These problems are as likely to appear as CCSVI, in a person with CVMs. The development from the embryonic venous system into the adult one is very complex and there are a lot of things that can go wrong. In my case there is heart disease which has been treated with stents. Some of the things that can go wrong are ones that you do not want to find too late, like problems with your liver. So the gold standard can be very urgently needed even if you don't do Liberation.

People who are used to looking at brains and seeing problems that they not only cannot explain but cannot fix, are not the people I want looking at my veins, and frankly, regardless of all the learned discussion here about what 'science' requires, personally I could not give a tinker's farthing whether anyone is convinced, or whether they think I am on placebo. If it does what it seems to have, for Barb Farrel, I want every other deadly ill CCSVI victim to have access to it, because it will keep some of them out of an early grave. Even if it is placebo.

Where I disagree, with delaying that until 'more research' is done, is that we all know research takes time, and people will die waiting, like Barb Farrel was close to doing, after her place in the line-up was erased and Dr. MacDonald was shut down.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2892
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Zamboni's protocols

Postby ThisIsMA » Fri Aug 06, 2010 11:00 pm

With respect to Lyon's question:

Please show me that Zamboni is trying to be part of the solution and point out to me where he has posted the protocols prominently


I decided to look around and here's what I found. Dr Zamboni has described the doppler ultrasoound protocols in great detail in at least two published journal articles. Here are links to them:

http://www.direct-ms.org/pdf/CCSVI/Zamb ... oppler.pdf

www.fondazionehilarescere.org/pdf/06-2484-ANGY.pdf

Note that the second article above is a study showing that reading about the protocals without being trained in them is not adequate to create reproducible results.

Also I see on Dr. Zamboni's website that he is offering a year long acedemic course at the University of Ferrara in advanced venous doppler technique, including training in screening and diagnosis of CCSVI.

URL

So by next summer there will be up to 50 more trained CCSVI doppler ultrasound technicians. They will likely mostly be residents of Italy, though it looks like three slots are being reserved for people from outside the EU (if I am reading the translation from Italian correctly).

I'm going to print out the two journal articles I've linked to above and mail them to an ultrasound technician I recently spoke with by phone who currently thinks CCSVI is "a bunch of baloni" because he scanned 4 people with MS and didn't find CCSVI in any of them.

This is an example of why widely distributing the protocols is very important!
DX 6-09 RRMS
User avatar
ThisIsMA
Family Elder
 
Posts: 152
Joined: Sat Feb 13, 2010 4:00 pm
Location: USA

Postby L » Sat Aug 07, 2010 3:12 am

Lyon wrote:
Cece wrote: It is serious damage...that only shows up 30 years into the disease process, on average. Chronic, not acute.
I guess I've never heard it explained that way.

If true, it makes no obvious sense to me.

Something that is thought might cause a disease doesn't exist until 30 years into the disease process?

Just to be safe? Head to the lifeboats NOW!


I've never even considered it to be a stretch of the imagination. I mean, at first I didn't consider it at all, I am so fed up with the illness and so jaded by the various cures over the years, that I didn't allow myself - probably because I have a medical phobia and the idea of cardiac catheters makes me feel ill. But once I allowed myself to do so, it made perfect sense, not only because it fills a vacuum, but it seems logical.

The iron builds up slowly, slowly until it becomes too much for the body to cope with and its unsuccessful attempts to clear the iron out is autoimmune response. An environment can become toxic, slowly, over time.

The fact that someone's mother's sunlight exposure during pregnancy probably plays a role in their likelihood of falling ill with MS indicates that perhaps the illness could begin right from the start.
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby Billmeik » Sat Aug 07, 2010 4:25 am

Now folks this is coming from a layman when it comes to the vascular system but for the devastation this disease causes should it really be that hard to find the abnormalities? I mean if a blockage causes blindness, paralysis, etc. should it be that difficult to locate? I mean we are talking some serious damage to the nervous system not your run of the mill hand numbness.



Really both ultrasound and mri only hinted at my blockages. It was venography that did the job. That's why it's a worry that most of the studies coming up don't use it. Just UBC.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 4:00 pm

Postby BadCopy » Sat Aug 07, 2010 7:52 am

Really both ultrasound and mri only hinted at my blockages. It was venography that did the job. That's why it's a worry that most of the studies coming up don't use it. Just UBC.


That seems to be forgotten by most (including many on this thread). How many times have people had a Doppler, MRV, Trans or extracranial with no sign of CCSVI and then, IMAGINE THAT ! during the venogram they found stenosis and reflux.

Why do we sit and argue about MRV Doppler protocol when I think a lot of us realized long ago that to really be sure you have to do the Venogram. We all make are own decisions, but I won't be ok with the findings unless it was from a Venogram.
User avatar
BadCopy
Family Elder
 
Posts: 141
Joined: Sun May 23, 2010 3:00 pm
Location: 10,000 Lakes

Postby Lyon » Sat Aug 07, 2010 8:09 am

.
Last edited by Lyon on Sun Nov 20, 2011 7:21 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby L » Sat Aug 07, 2010 8:19 am

Lyon wrote:
BadCopy wrote:Why do we sit and argue about MRV Doppler protocol when I think a lot of us realized long ago that to really be sure you have to do the Venogram. We all make are own decisions, but I won't be ok with the findings unless it was from a Venogram.
I'm with you but the venogram is considered invasive and I guess there's some ethics problems involved with using it on controls. I don't know, maybe it's going to be hard finding controls willing to undergo something like a venogram?


You can find controls willing to do pretty much anything for money.
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby Lyon » Sat Aug 07, 2010 9:49 am

.
Last edited by Lyon on Sun Nov 20, 2011 7:21 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby L » Sat Aug 07, 2010 10:58 am

Lyon wrote:
L wrote: You can find controls willing to do pretty much anything for money.
For some reason I hadn't even considered that you can/would pay controls, but you're right.

OK then, I have to wonder about the cost of catheter venography. Not that there is any realistic substitute but I wonder if it's ridiculously more expensive than the other tests?


Oh yes, for sure. An ultrasound needs one person. At least three for catheter venography. Doctor, nurse, anaesthetist. Anaesthetist's nurse too? Then there's the catheter itself, the dye, quite an expense all in all I should think.
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby 1eye » Sat Aug 07, 2010 12:20 pm

That's why Liberation is done at the same time as diagnostic imaging with the dye. When they put in my stents it was just after a portable echocardiogram machine had come around, to my bedside, and the technician probably had the power to stop angioplasty, but it was probably "no news is catheter news", and the details were much more obvious on the fluoroscope during the procedure, so the ultrasound results were for screening only. Yes, it is expensive, but it can include diagnosis and treatment. MRV and Doppler can help but are not needed if you are pretty sure you are going to find a problem. If we just accept what more than one researcher has found, that 9/10 MS patients have this problem, we can then start doing the venogram/ballooning they need in one trip, and develop all the other diagnostic and imaging and all the high-tech tests we want, without so much time pressure.

Even if you have a serious problem with results that are not made in (north) america, or english, or whatever, there have been results indicating it is worth a poke around in more than 50%. How about treating that 50%, especially if they are past EDSS 9?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2892
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby L » Sat Aug 07, 2010 1:04 pm

Lyon wrote:
L wrote: You can find controls willing to do pretty much anything for money.
For some reason I hadn't even considered that you can/would pay controls, but you're right.

OK then, I have to wonder about the cost of catheter venography. Not that there is any realistic substitute but I wonder if it's ridiculously more expensive than the other tests?


Thinking about it, if I were designing the study I'd sedate the patient. Midazolam is an amnesiac. Just an incision, bandage it up and there you have a patient who doesn't know what's happened to them.
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby garyak » Sat Aug 07, 2010 3:24 pm

This Edmonton Journal opinion article claims MS is placebo - lots of this popping up everywhere.

URL
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 3:00 pm
Location: grande prairie , alberta,canada

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service