Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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gibbledygook
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Post by gibbledygook »

WOW!!!!!! That's fantabulous! :D

PS my walking seems much better when I wake up and generally...I've been sleeping on a sort of inclined bed for a week or so and taking varicose vein herbs, horsechestnut, butcher's broom, hesperidin...probably just random.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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mrhodes40
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Post by mrhodes40 »

Holy cow Cheer! Thanks! I am so glad that comment comes ahead of my tests. It helps to know. Dr Anonymous, thank you, we wish you every success in your endeavors to replicate this work!

Cure is one of "us" well known to us all, a good fellow well met, I am upset on his behalf and by extension all of our be"halves" (!) that it was not easy to reproduce in his guy's office. I can't understand how it can be that they found jugular reflux then rejected the whole idea based on "not reproducing" Zamboni's work.

I mean based on what known thing is it normal and OK to have reflux and ignore it? The '09 paper that I own a copy of has the numbers split out for each test, and for all the tests many MSers failed but very few controls failed, like one person out of 177 is all the controls that failed for most tests. Reflux (the way Zamboni does it dring respiratory pause and not in valsalva) in particular had no control failures but many MSers.

It is also true that many people in the Dec '08 paper who underwent venography suddenly had obvious full blown stenoses when they did not with doppler and it was the trained Z team looking at those people, so that means doppler is not the be all end all diagnostic. Clear doppler's don't mean clear venous drainage necessarily apparently.

Other papers by other workers find reflux in controls but that is with the valsalva manoever. That's different, but if practitioners in general are not familiar with standards in this area of venous drainage because there are not any, well that makes sense that people don't know how to interpret these findings and sort of think "ho, hum" when they should be thinking "uh oh!".

Here's a Zamboni comment from the Doppler Hemodynamics paper linked earlier this thread with regards to standards
However, there is no ECD-TCCS standardization of what can be considered a normal
venous return. The authors have summarized the current knowledge of the Doppler haemodynamics of the cerebrovenous
system and propose a list of reproducible clinical parameters for its sonographic evaluation. In future, the development of
this diagnostic technique could be of singular interest in iron-related inflammatory and neurodegenerative disorders like
multiple sclerosis.
In the Jan '09 paper "The value of doppler haemodynamics in MS" (I own a copy the whole paper is not online)
The diagnostic accuracy of the detection of ≥2 anomalous
parameters of cerebral Doppler venous return in recognizing CDMS
in comparison to the gold standard of the revised Mc Donald criteria,
clearly indicate the high potentiality of the experimented cerebral
Doppler venous investigation. It could be in future proposed as a
novel, non-invasive, cost-effective tool in the assessment of MS.
However, further studies are necessary to achieve this goal, in order to
evaluate the reproducibility, the inter and intra observer variability, as
well as the need of specific training of the operators
Dr Zamboni seems to have anticipated that it will not necessarily be easy for every Dr Tom Dr Dick and Dr Harry to to do this right out of the box.

Cheer, everyone, should we request a forum for just this subject? Does it seem like this is more than just a flash in the pan idea that we can talk about for a couple weeks? It does to me, it seems like there is more to come. I wrote to the cxsymposium to see if I could buy a copy of the lecture Dr Zamboni si giving on the Liberation proceure, but they said there is not anticipated to be one BUT, the lecture will be available online with slides afterwards.......... We'll all want to talk about that I'm sure.

If we had a forum we could have a sticky right at the top that has nothing in it but links to the Zamboni papers or related research papers or comments like the Simka rapid response to the '08 Zamboni paper, then people coming in to the forum could have that at hand instead of trying to read all of this to pick it out of a 27 page thread. It'd be easier to reference these things as we write too. We also could have separate subjects within this subject so different ideas could be explored, like a whole thread about venography for example
Thoughts?
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AndrewKFletcher
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Post by AndrewKFletcher »

Gib
Thank you again for the feedback. If all goes as anticipated your progress should be of great interest to people on this forum.

Your walking should continue to improve more in the coming months, but please try not to overdo exercise as too much too soon can become counterproductive

There are 3 doctors to my knowledge that are following this thread with a great deal of interest in IBT and the possibilities of reducing the internal cerebral vein swelling without surgery. Two of these doctors are experimenting with IBT.

Please, Let us not ignore the other people whose names are on these important papers. Paolo Zamboni 1*, Roberto Galeotti 1, Erica Menegatti 1, Anna M Malagoni 1, Giovanna Tacconi 1, Sergio Dall'ara 1, Ilaria Bartolomei 2 and Fabrizio Salvi 2

And let us not ignore the enormous contribution of Franz Schelling, who stuck his neck out to challenge neurologists who to this day hold the view that ms is an unknown autoimmune response that attacks the myelin.


Read the pilot study reports as they happend to see where IBT is heading.
http://groups.google.co.uk/group/inclin ... d+to+sleep



1 Vascular Diseases Center, University of Ferrara, Italy
2 Neurology, Bellaria Hospital, Bologna, Italy
gibbledygook wrote:WOW!!!!!! That's fantabulous! :D

PS my walking seems much better when I wake up and generally...I've been sleeping on a sort of inclined bed for a week or so and taking varicose vein herbs, horsechestnut, butcher's broom, hesperidin...probably just random.
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Post by SarahLonglands »

Andrew, has Zamboni replied to you yet? Sarah
Last edited by SarahLonglands on Fri Mar 13, 2009 11:38 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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CureOrBust
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Post by CureOrBust »

a couple of points from various posts, do not remember who. :oops:

If you are a sonographer and are reading this, THANKS!

If you have experience with lower extremities, it may be beneficial to speak with a Sonographer / Dr who specialises in stroke treatment. That's what my "team" were specialised in, and they appeared to know straight off the bat what to do with Zamboni's tests, and how, and thought it was all very simple to perform. However, I "only" was found to have a reflux in the IJV Valve (ie Test 1), not 2 or more.

You are probably already covering it, but having controls would be beneficial.

Thanks cheer for sharing.

As for having it's own forum, I think we are heading that way, but are not yet there.

mrhodes40. TODAY IS THE DAY! Good luck! :) :) :) I can not wait to hear your results (and any feedback or answers to your questions).

Andrew, FYI, I have been using IBT for a couple of weeks, and have noticed no changes I can attribute to it. But, it has no down side for me either, and I do think it may help with varicose vein issues, and it will be some effort to make my bed flat again.
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mrhodes40
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Post by mrhodes40 »

mrhodes40. TODAY IS THE DAY! Good luck! I can not wait to hear your results (and any feedback or answers to your questions)
Thanks! It's still thursday evening here, but tomorrow bright and early we are off for the trip! It'll be about 20 hours yet before I can report back.... fingers crossed :D :wink: :? :!:
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EMT
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Post by EMT »

This is the most fascinating topic I've come across yet. I'm going to sit down tomorrow and read all 26 pages, and the reports.

This is very encouraging, so positive! I had a breakthrough with my own doctor today so I think I will suggest this to her and have her send me over to get something done, once I've read up and printed out the material for her viewing.

Amazing.
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AndrewKFletcher
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Post by AndrewKFletcher »

Thanks for the update.

Be patient, this should work to some degree with everyone. Timescales for each person will be different depending on length of time a person has had ms and at what stage ms is at.

The video on youtube showing recovery in spinal cord injury is not an isolated case. Spinal cord injury responds very well to IBT and has been shown to reverse considerable loss of function and sensitivity in a post injury dating back 18 years.

These reports can be found in the carecure forum for anyone who is interested. PS ignore the idiot posts on the carecure forum, there are a few.

It is worth remembering also that varicose veins cannot go down without the pressure changes in the whole venuos return system being altered. This must also apply to the internal jugular veins and as mentioned in this thread in published papers the pressure and the reflux is posture dependent.

Michel Cabanac's paper on reflux due to exercise and the inevitable body temperature increases and evaporative heat loss showed a complete reversal of bloodflow back through the emissary veins through the skull, these vessels have no valves, yet the blood flow completely reverses when observed with a doppler flow monitor.
http://www.springerlink.com/content/y28 ... pdf?page=1

Rosacea: Disturbed Defense Against Brain Overheating

H. Brinnel1, J. Friedel, M. Caputa, M. Cabanac and E. Grosshans
Service de Médecine, Hôpital-Maternité, BP 116, 69210 L'Arbresle, France
Clinique Dermatologique, Faculté de Médecine de l'Université Louis Pasteur, 1 Place de l'Hôpital, 67091 Strasbourg Cedex, France
Institute of Biology, Department of Animal Physiology, N. Copernicus University, 87100 Torun, Poland
Département de Physiologie, Faculté de Médecine, Université Laval, G1K 7P4, Québec, (Canada)
Received: 15 October 1987
Summary:
Tympanic (Tty), esophageal (Tes), forehead, and hand skin temperatures, as well as the forehead evaporation rate were recorded in six men (four suffering from rosacea and two healthy controls) before, during, and after 1 h of warm bath (38° 13;39°C). During the last 30 min of the bath, the subject's face was vigorously fanned (14 m/s). Blood flow was explored with ultrasonic Doppler in the emissary veins of the cranium during normothermia before entering the bath, and during hyperthermia just after leaving it. Under normothermic conditions, Tty was higher than Tes in all subjects. In three patients, no blood flow could be detected in the ophthalmic emissary veins whereas in the fourth patient as well as in both control subjects, blood flowed from the intracranium to the face. During hyperthermia, face fanning decreased Tty by 0.25°±0.05°C (±SEM) below Tes in the control subjects whereas in all patients Tty remained warmer than Tes by 0.1°C. Doppler recordings showed a rapid inward blood flow from the skin to the brain in the controls during hyperthermia. In patients, however, there was no change from normothermia in the blood flow patterns of vena angularis oculi. Their forehead temperature was permanently higher than in control subjects. Venous blood flow from the skin to the brain appears to be suppressed in rosacea, thus inhibiting selective brain cooling in hyperthermic conditions. The importance of this mechanism in the pathogenesis of rosacea and its significance as a means of investigation are discussed.

Will return to this post later with some more papers from Cabanac and Falk et al
CureOrBust wrote: Andrew, FYI, I have been using IBT for a couple of weeks, and have noticed no changes I can attribute to it. But, it has no down side for me either, and I do think it may help with varicose vein issues, and it will be some effort to make my bed flat again.
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cheerleader
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Post by cheerleader »

Hey Marie-
I'm thinking of you today! You've left by now, but the positive thoughts are with you. I'm stuck home in bed with the worst flu I've ever had. Jeff brought it back from NY...funny/sad thing is, he didn't even know he had the flu. He thought he was just having some bad MS days. Now I have it and I can't even get out of bed. Body aches, dizzy, fever, fatigue. Jeff said he feels like this alot. He just brought me some coffee. He's feeling better today, and sends his prayers to you. You guys are all my heros.

Hope that you may find some answers.
all the best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Post by Loobie »

Hope you feel better soon Cheer. I, knock on wood, have not had that dreadful illness since I've been dx'd. OK, I probably just jinxed myself! The flu sucks, no two ways about it.
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Post by Artifishual »

get well soon cheer !! the flu is brutal. ms or no ms.
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mrhodes40
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Post by mrhodes40 »

Thanks for the happy thoughts and support everyone. :D

Well I just found the nicest vascular guy to be my guy!

They are a peripheral vascular clinic attached to the University of Washington. I chose this guy because of his published work and also, believe it or not, because he looked really kind and friendly in his picture. Turns out, yes he is. :D

His partner/sonographer had a copy of the technical methodology I sent him a couple of weeks ago, Zamboni et al '09 and Doppler Haemodynamics from '08 and he had studied it well. He was prepared to do his best, but he acknowledged that this is a periph vasc lab and he was not hopeful especially about the cerebral veins and ventricles. No big, I said, I am really interested in seeing what we are able to, to help me decide if there is more to go on, more to pursue so I can get some direction.

So the brain stuff was a no go, couldn't see anything but arteries--but oddly did see the ventricles just as in the papers. They were "small" I already knew I had no atrophy to speak of from MRI.

Jugulars were clear--one sort of had a slight reflux pattern that ended up being called "normal", but the left VV had very obvious reflux.

so we really only looked well at the 2 jugulars and the 2 vertebral veins, but I did have reflux. This is plenty for me; I don't care we did not find the other abnormal finding, neither did Doc. Geez, we didn't really do that much at all. Now that we see that there is something here, he is going to delve into the literature deeper, make a real effort to understand it well, and email Dr Z and see what we do from here. He said he is happy to be on board this unusual journey with me and thanked me for letting him part of it. Wow.

He will look into it then email in a week or two with a plan what to do next.

On the not so good side, he mentioned the VV reflux is a bad pattern for fixing, as the VV is very small. He said about the size of the cable from your mouse to the computer. He also said that veins tend to block up again when you fix them whereas arteries because of the fast moving pulse do not, so repair in this area is not a one shot deal necessarily.

He also commented that the iron/inflammation question is a chicken and egg deal, you can't be sure the inflammation came second. He did not seem to feel that venous ulcers are all cut and dried in terms of understandin which I guessed ahead of time, so saying an MS lesion is like a venous ulcer is not to say we know all about it now.

I also asked a couple of questions of the sonographer, who seemed really competant, re reproducibility and the issue of interpretation, he felt that there would be a learning curve involved because the Zamboni protocol for testing is pretty specific and detailed. I mentioned that a team elsewhere was working on reproducing the results and that they had commented there was a bit of a learning curve and that many details were easy to miss. He commneted that if you do dozens of them you'd get it down to a routine and get good at seeing the patterns, prior to that it is a little bit catch as catch can.

So I offered that I will do venography or whatever they are interested in doing no problem, but I have to wait and see what is offered. They may refer me to a doppler lab for the DCV's that is a neurovasc lab or they may go straight to venography. Depends on what feedback he gets.

Anyroad, that's what happened. 8)

I'm happy about it, grateful we saw something to support the idea, given the little bit that we did do and considering how much of the patterns that the Z team saw were in the azygous vein and stenoses that appeared in the jugulars only with venography, and how much was the DCV's which we were unable to check, I am fine with what we have at this point. I am grateful to have someone who is interested.

marie
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DIM
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Post by DIM »

Bravo Marie, thanks for sharing with us your experience!
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mrhodes40
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Post by mrhodes40 »

Thanks Dim! :D

Cheer get well!! :wink:
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cheerleader
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Post by cheerleader »

Thank you, Marie. For traveling from your home, spending time and money to help further this research. You have no idea how much this may impact others. Give your hubby a big hug for me.

I'm so glad you have found someone who is interested in this line of research. Yes, there will be a learning curve...but it's important to find other vascular docs who can put ego aside, and learn.

Just so I understand, the vertebral veins come down thru the cervical neck, right? Does that mean they're above the azygos? Perhaps there's blockage down river which you weren't able to see today? So many questions....but it's real. Venous reflux is showing up.

I feel like a mac truck is parked on my chest....but your news has made my day home sick alot brighter. I'll get better. I want you better, too.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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