Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Loobie » Sun Apr 12, 2009 5:56 am

Hell yes! I guess all we have to disclose to our insurance is that we are fixing the stenoses. They don't even have to have a clue or our devious agenda :twisted: :twisted: . :lol: :lol:
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Postby mrhodes40 » Sun Apr 12, 2009 10:19 am

I set up my dopplers knowing it was an experimental thing--to see if I had reflux, and thus I expected to pay for them at the out set.

But now that we have proof of a problem, it becomes a different issue it seems to me. Based on Cheer's doc comment
explained that reflux and stenoses in the jugular and azygos veins as found by Zamboni will covered by insurance. Correcting venous insufficiency which involves internal organs is not a "cosmetic" surgery (like varicose veins which might not be covered by some insurance.) Venous return from the brain and spine to the heart is essential for the body's health

.....all we have to do is point to the results of the dopplers

I have to say though that I have not had further contact and information from my vascular doc, we did the dopplers and he asked me to give him a few weeks to figure out what to do next. I have written to his email, but he has not responded I begin to wonder if I have emil wrong....thus I call monday to get more information about our next move. 4 weeks is enough to have some idea of what we want to do next.

I know what I want: venograms and repair. :wink:
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Postby AndrewKFletcher » Mon Apr 13, 2009 12:40 am

Those pictures of varicose veins improving using Inclined Bed Therapy are not faked.

Why is it so hard to get this simple message through to you guys?

If the varicose veins are deflating in the legs due to sleeping inclined, then surely the internal varicosed veins will follow a similar pattern without surgery?

Makes sense to me at least.

Andrew
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Postby peekaboo » Mon Apr 13, 2009 10:55 am

I just went on ebay and purchased a 7 1/2 " wedge pillow for 15.99+s/h. this is cheap and there are others on ebay (same vendor same product) if anyone is interested. I need it anyway because i will be able to read now in bed, plus get the benefits of venous health. My circualtion is much better laying down (flat or a pillow) anyway that inclining my head & upper chest will be a Plus. H.
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Postby mrhodes40 » Mon Apr 13, 2009 1:23 pm

Why is it so hard to get this simple message through to you guys?

If the varicose veins are deflating in the legs due to sleeping inclined, then surely the internal varicosed veins will follow a similar pattern without surgery?


I posted a post related to IBT on that thread in reponse to this query answering the question as to why it is "so hard to get through to" me at least. It is off topic for this thread, but the conclusion at least applies

But note I said MOST of us. I have vertebral vein reflux, the vertebral veins carry the venous drainage when you are upright. Guess when the vetebral veins are not refluxing?

When you are laying down flat.

If Zamboni is right about this issue and there is a blockage of the azygous jugular or combinaitons thereof, the answer is surgery.


It is irresponsible to suggests that IBT is somehow proven to reduce vericosities and that photos of leg vericosities that seemingly have reduced somehow proves that you are offering something essential to people concerned about the possibility of stenoses in the azygous or jugular veins.

I have added my personal opinion related to IBT on the vericose vein thread, where it belongs, rather than here where it is off topic.

http://www.thisisms.com/ftopicp-55653.html#55653
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Postby cheerleader » Mon Apr 13, 2009 4:21 pm

Thanks, Marie. We get it, Andrew. We choose not to respond because it is off topic over here-
Back to CCSVI!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Apr 14, 2009 6:00 pm

I hesitate to do this, there are many links I did not include (like all the ones related to perfusion of the brain and mean transit times and all the venous ulcer material) that are of interest for the person interested in this idea, but I wanted to mine the thread for the links to the really essential materials. If we ever get a forum of our own this will be a sticky at the top.........as it is I will update it from time to time and repost it I guess :roll:
Please don't let this be an excuse to not read the thread, it is full of really great discussion and other materials!

The Zamboni et al Materials

Zamboni presentation 2006 The Big idea: iron dependant inflammation in venous disease an proposed parallels in MS
There are a variety of materials in that link related to venous cause of MS, the Zamboni paper is the second one down and it outlines the hypothesis of how MS might be caused by venous insufficiency. This paper starts the journey for the Ferrara team forming the basis for the idea that MS might be related to venous issues and setting the stage for later research to see if that is correct or not. The other materials on that "lab project" paper are worth reading as well.

Zamboni et al 2007 Intracranial Venous haemodynamics in MS
This paper is the first doppler studies of 89 MS patients and 60 controls.
All MSers had at least 2 venous abnormalities; 100% concordance.

Menegatti, Zamboni, '08 Doppler Haemodynamics of cerebral venous return
This paper describes how to do the tests and suggests parameters for normal findings.

Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms
Though this paper was published in January of '09 the research was actually done before that of the Dec '08 paper: it was the second large doppler study.

It used 109 MS patients and 177 controls including people with OND and other vascular diseases, thus giving the opportunity for the controls to have issues that might make them prone to have problems with the venous system. Again, all MS patients had 2 abnormal findings and controls had one or less. Because the controls were people who we might suspect could have issues with venous drainage and it remained true that MSers were the only ones that had 2 or more abnormalities, and because this was a large study, it becomes more likely this is a pathognomic pattern for MS; unique to MSers.

In fact the total number of tests performed on normal people, 5 tests times 177 people=871 normal and only 24 abnormal findings. The test totals on the MSers were 288 normal and 257 abnormal tests. Huge differences in venous function overall wsith the MS population failing test after test while it was rare for others to have an issue

Zamboni et al Dec 2008 "Chronic cerebrospinal venous insifficiency in patients with multiple sclerosis"

By the time they did this research, the team was finally permitted to do venograms in any patient with MS who again showed the 2 abnormals.

All 65 patents did, so all had venograms after the dopplers to assess the actual stenoses. This paper includes picture of the stenoses, twisted veins, etc that were seen on venogram in addition to showing that 100% concordance with the 2 abnormalities on doppler.

Dopplers are sort of like taking a blood pressure; they are an indirect but noninvasive and safe way to get a hint of blood flow. Venograms are like an x-ray; you insert dye into a vein and watch it with an x ray type mahine as it goes through the vein. You directly visualize the vein by this method. The fact that this research has venograms that showed actual stenoses, and that these stenoses showed up in 4 distinct patterns is very very important. it is direct evidence of an abnormality not a hypothetical speculation that there "might" be one. There is a stenosis in these people. For those individuals it is proven. However it remains to be seen if removing these results in better MS outcomes ie do they get better.

After this research the Zamboni team enrolled 100 people with MS in a new study. This time, every patient will get not only dopplers and venograms, they also have their stenoses repaired with the Liberation Procedure--an endovascular procedure to relieve the stenoses. They will be followed for one year to see how they do with regards to MRI findings EDSS etc. That study began in Oct '08 for enrolling assessment etc, and the surgeries were done in January '09. Comments on how this is going by Dr Zamboni are below in the cxsyposium interview.

Simka comment on the Zamboni Dec'08 paper
Dr Simka comments on the work with some very thoughtful observations.

.............................................
presentations with slides by Zamboni

Charing Cross 2007 Presentation by Zamboni

Don't yet have the '09 one with the results of the Liberation proceudre hinted at, but here's an interview with Dr Zamboni from that symposium
'09 Charing Cross Interview with Dr Zamboni with comments on his Liberation procedure
................................................
The Schelling materials

F. Alfons Schelling "Multiple Sclerosis: The Image and its message"

Video clips of the venous abnormalities, pictures etc by Schelling
...................................
Other Supportive Abstracts/Papers

Chih-ping Chung et al Jugular venous reflux

Simka, Rybak 2008 "Hypothetical molecular mechanisms by which local iron overload facilitates the devel. of venous ulcer and multiple sclerosis

Dr. Simka Website

7 tesla MRI:a new vision of microvascular abnormalities in MS

Raised venous pressure as a factor in mutiple sclerosis
Last edited by mrhodes40 on Wed Apr 22, 2009 12:21 pm, edited 1 time in total.
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Postby peekaboo » Tue Apr 14, 2009 6:24 pm

[size=18][/size WOW and thank you :D
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Postby pinpricks » Wed Apr 15, 2009 10:06 am

WOWWWW again :D :D :D :D
Great discovery!!
Go ahead and proceed ...

--
Had EMG last week.
Talk to the neuro in charge of exam.
Result sent to my neuro end of this month.
Will see ...

Take care.
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Postby Hub » Thu Apr 16, 2009 11:08 am

mrhodes40 wrote:I wanted to mine the thread for the links to the really essential materials. If we ever get a forum of our own this will be a sticky at the top.........as it is I will update it from time to time and repost it I guess :roll:


Marie,

Thanks for the post -- you're a truly wonderful resource for TIMS!
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Postby mrhodes40 » Thu Apr 16, 2009 1:51 pm

thanks, I'm glad it helps! The information is wonderful, I want it all in one place too!
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Postby Lyon » Thu Apr 16, 2009 2:49 pm

.
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Postby notasperfectasyou » Thu Apr 16, 2009 3:05 pm

I need to make it back here. that was a huge post, wow. In my current efforts, I'm finding a LOT of tangentially related material delaing with atherosclerosis. I don't know if you have tried combining "atherosclerosis" with "vascular" when searchign on this topic - but I think you'd be surprised. Ken
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Postby mrhodes40 » Thu Apr 16, 2009 6:20 pm

Hi Bob
easier to start a new thread

It seems to me that we need a forum....?

Napay as for atherosclerosis there are numerous connections, I agree. Not least why are all atherosclerotic plaques full of CPn while MS is often associated with it too?
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Postby cheerleader » Thu Apr 16, 2009 7:58 pm

Marie...
Thanks SO MUCH for compiling that list of important research. Your time, effort and medical knowledge are indeed a precious resource here. Maybe take Bob's suggestion and start a "CCSVI research- papers and links only" thread- and preface that it is an "informational" thread to be updated as new research comes in- and we'll keep the back n' forth discussion here-

It appears we're not going to get a forum...we've asked several times for over a month, NHE has submitted the formal request, and no luck. (Hoping next week gives me some new info for y'all.) Keep it coming.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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