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PostPosted: Mon Apr 19, 2010 4:39 pm 
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While i do not want to have a migration in one of my patients, i do not think that is my greatest worry. it is more what to do if the stent clots off. will it be possible to re-established flow through the clotted stent. But for you that is a bride or stent that you havent arrived at yet.

I would love to see a picture of you pre and post procedure venograms.


I have just posted (Donnchadh's MRV) some images taken on 5 April 2010; while they are not venograms, they do show the extensive collateral veins. This test was after my venoplasty attempt.

And please I'm a happily divorced man ("bride")....I have enough to deal with MS! Wink

Donnchadh


Ahh, the transparency of it all. It is kind of tricky answering all these questions at all hours of the day and night.

it is a bridge or stent you havent arrived at yet


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PostPosted: Mon Apr 19, 2010 4:41 pm 
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Dr. S. -

A doctor told me that anomalies in vein structure is not so unusual, not a cause to intervene. Because the venous system is repetitive, I was told that these irregularities are not cause of alarm or intervention in and of themselves. I was told it's like other differences in the human body, unexplained differences between one side or another, or one person or another, anomalies, but of no consequence. Also that venous flow can change dramatically by positioning of the body, so we really shouldn't read too much into those findings since it is a fluid matter depending on positioning.

Do you agree with that?


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PostPosted: Mon Apr 19, 2010 4:48 pm 
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frodo wrote:
Dear Doctor,

I have been reading the article of Dr. Zamboni in which he describes CCSVI and how to perform the five Doppler test. Nevertheless he does not give too much information about the expected reflux, like the minimum volume and time of the reflux to consider a positive in the test.

Is there any source where this parameters can be consulted?


Dr Zamboni defined pathological reflux as more than 0.88 seconds in his paper
in the journal of neurology neurosurgery psychiatry in 2009. vol 80, pages 392-399.


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PostPosted: Mon Apr 19, 2010 4:50 pm 
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shye wrote:
In response to LR1234 query re: spinal manipulation, your reply
Quote:
i am certainly not an expert on manipulation of the neck. but disks can sometimes be put back in place, i guess they can be pushed out of place. Perhaps what has happened is some movement that resulted in compresion of the vertebral veins that travel inside the bony vertebrae and slower flow. if you jugulars are narrowed, you need your vertebral veins even more so.

good question. sorry my answer is not based upon evidence

I wonder if anyone has done a randomized prospective blinded trial on manipulation of MSers?

after viewing this clip http://www.youtube.com/watch?v=2Ae5CHyS ... re=related re: Atlas alignment, I got my chiropractor to manipulate my rotated atlas back into alignment (had been in several accidents involving head and neck years ago) --instant relief from years of severe pain and discomfort, incl many of the MS nerve symptoms--not a blinded trial, but proof it might be good to do one.


This is called a "confounding variable" . differentiating symptoms of MS from prior spinal injury can be difficult and data derived from this must be extracted. That is one of the values of a controlled research study


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PostPosted: Mon Apr 19, 2010 4:55 pm 
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girlgeek33 wrote:
Another question: How often or how many times can you re-angio the veins? Thought that I read somewhere that there is likely a better chance of the 2nd angioplasty of staying open. And that with a 3rd angio required and done the best success rates for the veins to remain open. How true is this? Any concerns come to mind about doing angio a 2nd or 3rd time. Do the risks increase with each additional angioplasty. Dr. Bonn will be seeing me 1 month after, 6 months after and 1 year after. !


Each procedure has the same risk as the one before. Each angioplasty has its own risk. Sometimes the tear that the angioplasty causes will result in some of its own scar and that can lead to its own elastic recoil. Also thrombosis of the vein increases the failure rate subsequently.
i do not think that repeated angioplasty improves outcomes. I am not aware that there is data to that effect, but i am sure that one of you will find it if it exists and prove me wrong


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PostPosted: Mon Apr 19, 2010 5:34 pm 
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cms1233 wrote:
Dr Sclafani, my sternum has always been a little deformed with the right side higher than the left and actually my ribs are deformed also with one side of my chest higher than the other. Could this have affected the azygous vein and cause CCSVI? I also find myself gasping for air or having to take a deep breath often. Thanks.


You know I didn't think anything of it but the MRI tech told me I have one side higher than the other... Hhhhmmmm.....


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PostPosted: Mon Apr 19, 2010 6:15 pm 
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eric593 wrote:
Dr. S. -

A doctor told me that anomalies in vein structure is not so unusual, not a cause to intervene. Because the venous system is repetitive, I was told that these irregularities are not cause of alarm or intervention in and of themselves. I was told it's like other differences in the human body, unexplained differences between one side or another, or one person or another, anomalies, but of no consequence. Also that venous flow can change dramatically by positioning of the body, so we really shouldn't read too much into those findings since it is a fluid matter depending on positioning.

Do you agree with that?


Yes and No

when there are limited veins draining a critical area, one should consider the possibility that they are critical veins.

ask him about stenoses of the veins draining the liver. Ask him if he thinks that obstruction of the outflow veins of the liver is ok.ask him if he ever heard of budd chiari syndrome. ask him if he believes that standing up will cure budd chiari syndrome

ugh
you have instilled in me an impatience for know it alls


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PostPosted: Mon Apr 19, 2010 6:28 pm 
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girlgeek33 wrote:
cms1233 wrote:
Dr Sclafani, my sternum has always been a little deformed with the right side higher than the left and actually my ribs are deformed also with one side of my chest higher than the other. Could this have affected the azygous vein and cause CCSVI? I also find myself gasping for air or having to take a deep breath often. Thanks.


You know I didn't think anything of it but the MRI tech told me I have one side higher than the other... Hhhhmmmm.....


This is so interesting. i think that this is a common thread. Try to explain everytthing as it relates to MS. I think that having MS does not prevent you from having other diseases and conditions. The condition you describe could be scoliiosis. that could surely cause shortness of breath

s


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PostPosted: Mon Apr 19, 2010 7:06 pm 
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Hi Dr. S.,

You recently mentioned "stenosis of the veins draining the liver" and I started to wonder...

I have really been struggling the past two weeks with pressure/pain/bloating in my upper right abdomen. It gets to the point where I often feel sick, weak & nauseated. I assumed it was the "MS hug", a phenomenon familiar in many PwMS.

Could the pressure/pain/bloating I'm experiencing be "stenosis of the veins draining the liver"? How do I find out if this is what I am experiencing? What tests do I ask for? Or am I screwed because this falls into the whole CCSVI paradigm?

I see my GP on Wednesday to go over blood labs (a whole other story! :( ).

As always, your knowledge & willingness to educate us is SO VERY APPRECIATED!! Thank you!

Mum :wink:


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PostPosted: Mon Apr 19, 2010 7:44 pm 
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Quote:

I have just posted (Donnchadh's MRV) some images taken on 5 April 2010; while they are not venograms, they do show the extensive collateral veins. This test was after my venoplasty attempt.

And please I'm a happily divorced man ("bride")....I have enough to deal with MS! Wink

Donnchadh
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Got MS?.....Get Liberated!


sorry to say (as cute as your curly veins are), that you are not my type.

Nor is your mrv. It is of the brain and doesnt tell me anything about whether the stenosis you have had treated is the culprilt or an upstream effect of a low down valvular problem.

These imaging studies are the first thing that needs to be sorted out in the research. There are as many interpretation of what the narrowins represent as there are collateral veins

Bravo to those who are trying to make sense of this.


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PostPosted: Tue Apr 20, 2010 3:10 am 
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Dr. Sclafani,

Reading and researching these past 5 months makes me wonder, for those with MS that do not have stenosis, have had all of the tests by someone knowing all that they should, I wonder if they need to look further in the vascular system? Study these patients more in depth? How important do you think it is to do more to see why these patients do not show the same stenosis? I guess I think if we look further, they may hold some more answers rather than add to the percentage of those without CCSVI. Wondering if I'm thinking the way some researchers are or if I'm just out there. lol

Thanks for all answers, especially the scoliosis answer. I can't believe I forgot I had scoliosis in the scheme of seeing the first person write about their higher side! lol


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PostPosted: Tue Apr 20, 2010 5:32 am 
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Doctor:

Is there any way to send you MRV's CD for a "second" opinion on a 'negative' analysis? Sample shots here:

http://s401.photobucket.com/albums/pp92/algis/Medical/

Thank you for your time.


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PostPosted: Tue Apr 20, 2010 6:54 am 
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Dear Doctor,

Probably stupid questions, but I have to ask,

Do you think in near future, there might be a treatment strategy where the stents or something more intelligent are allowed to stay for a shorter duration to reduce the risks.

Another question, do you think the future vein dilators (stent etc.) can have intelligence (say electronics) that provide more info to outside world to help manage the treatment or reduce risks.

Sir, to be frank, when we can go to the cellular and play around with the BBB, the above methods look pretty straightforward concepts, at least in theory.

Thanks for your time ...


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PostPosted: Tue Apr 20, 2010 11:07 am 
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Dear Doctor,

How to read the results of a spectrum graphic done by eco-doppler, with the end of to determine the presence or not of reflux??? How are and change the spectral lines (always up or up/down)??


Thank you,

M.


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 Post subject: reflux
PostPosted: Tue Apr 20, 2010 11:25 am 
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I was going to ask you: why do you not think reflux is a problem, and how do you think it is caused? I would think it is the source of instantaneous positive jugular pressure, which could overcome gravity enough to result in instantaneous back-flow strong enough to damage the BBB and cause all manner of trouble. If you look at the inflated brain-draining-vein pictures taken by Prof. Haacke, it looks like the veins have been inflated. Maybe the stenoses in the jugular are just strong spots in the vein walls, that didn't inflate?


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