This Is MS Multiple Sclerosis Community: Knowledge & Support

I posted on regimens moving to this thread

peekaboo
Family Elder


Joined: Feb 09, 2009
Posts: 130
Location: Arizona
Posted: Wed May 13, 2009 12:43 am Post subject: spreading the ccsvi word

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I would like to help spread the word of CCSVI especially for those who can't get to Calif. If my memory serves me correctly, Cheer and/or Marie wrote a introduction piece for those that wanted to make contact w/other Docs in their part of the world. Is this true? Maybe we can create a such a thing and broaden it / post it for those who will need to use it. Unfortunately we will have to be salespeople to sell the idea and we will need the tools to back it up....all the info on the master CCSVI forum will be too much info and too cumbersome/time consumimg to undertake. No doc/researcher will want to take the time to be convinced this is a worthy model.

What do ya think?

Holly

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cheerleader
Family Elder


Joined: Sep 11, 2007
Posts: 1249
Location: southern California
Posted: Wed May 13, 2009 1:11 am Post subject:

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Hi Holly...
Wanna copy this thread and move it over to the CCSVI forum? You can delete it here, and I'll do the same to this message.... I think it will be better served there, might be confusing in the regimen section (this area is more about treatments, journals, stuff folks are doing-)
thanks!!
cheer-
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09

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Dr Dake is an interventional radiologist. That is a specialty where the person is specialized in assessing people with scans of various types and intervening through the veins to fix some illnesses.

One recent intervention one can get through such a person is for fibroids-those benign tumors that women can get that cause severe bleeding. The interventional radiologist puts dye in the arteries of the uterus, finds the artery that feeds the fibroid and injects it with little beads so that it blocks off...then the fibroid dies. No hysterectomy no surgery.

In this case the intervention is to install stents or to do a repair of the specific area draining the brain that is stenotic.

I contacted a vascular surgeon to do my dopplers, but he was not as familiar with these kinds of stent interventions and was not sure what to do when my dopplers showed vertebral vein reflux.

Others may have better luck if they seek an interventional radliologist as Dr Dake is. The other possibility is a cardiovascular person as they commonly do carotid endarterecomies.

It seems to be true that Dr Dake is a special person in that he was interested in this idea, then immediately after finding out about it had a chance to meet Dr Z and see his data, and has the personality that he is willing to jump in. That seems to be the magic ombination that others need but don't have so far.

once this data is out there it will not be hard to find people though....I believe that wholeheartedly.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Boy I feel stupid sorry for the mix up

hey no problem!! it is just more liekly to be helpful and see more people here!! I'm glad you moved it...marie

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Holly...
This is a TERRIFIC topic, no apologies needed! Think it will get better traction here, thanks for moving it.

Marie's right about Dr. Dake. He is one in a million. You can call it dumb luck or God's providence that I found him (thru my Stanford endothelial health contact Dr. John Cooke) right before he went to London and met Dr. Zamboni and sought out his opinions and research. The timing and chain of events will always be miraculous to me, and I give credit to God.

But I do believe there must be other endovascular/interventional radiologists in the world who will step up and see if they can replicate the CCSVI paradigm and treat MS patients. It may take some prodding, but they exist.

There will be further press, research results and information released in the coming months- and I hope this will get more doctors on board. In the mean time, I recommend calling universities, seeking out the right people and sending that one Zamboni paper on CCSVI...that was the one that hooked Dake.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Just to be clear, you mean the December '08 paper found here
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Or you can also find it in the sticky thread

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

I'm thinking about writing a sell sheet(cover) for callers trying to get interested docs to accept literature etc and for sending literature. zamboni paper

I have ideas but not truly formed...somthing like

the CCSVI connection to MS , give short history ie: Schelling, zamboni, other authors of similar content .... sort of outline the Sticky CCSVI forum
site # of papers, earlier results, whats happening now zamboni's clinical trial, contacts beingmade in U.S. (for now Dr. Dake) State "brink of new medical model"..make it short and sweet maybe in list/bullet form...my cogs and wheels are turning

list of medical schools U.S by state
<shortened url>

list of medical schools Canada by province
<shortened url>

I would look for departments vascular, radiology etc. then by PHD. then contact info

I saw one of my neurologists a few days ago (before I had fully caught up with the happenings surrounding Dr Dake) and informed him of SOME of the things that were happening around this topic. He got interested, and spoke of maybe setting up some simple trials against the theory (to prove or disprove it, as I told him my personal "half" proof experience with another neurologist he greatly respects), and asked me to resend him the papers on it. I also sent all the info regarding cheer's husband and dr drake and the fact that a number of you guys have appointments with him.

This neurologist is running the trials for Campath here in Aust, and is in what I would think is one of the largest MS / neurology teaching & treatment hospitals in Australia.

I gave him Dr Dake's contact details, so hopefully he will contact him.

I kind of went "out of the box" today. I sent the '08 Zamboni report to the Myelin Repair Foundation. I have been a supporter of MRF since its inception and thought that maybe (just maybe) they did not know about this research. My thought being ..... look at Zamboni's model on venous insufficiency causing the snowball effect of the immune system becoming overactive, which then causes the lesions. Maybe the MRF will look at their model for myelin repair, AND maybe the venous insufficiency would cause a change in their model.

It is a shot in the dark - we will see if I get any response. Still no response from University Hospital in Denver.

CURE!!! Welcome back, Mate. Missed ya. I really don't think a neuro running trials for Campath is going to be interested in pursuing endovascular surgery for you. But I could be wrong....

We've learned alot more working with Dr. Dake. "Simple trials to prove or disprove the theory" won't work, or serve MS patients. It's really best to have MRV (magnetic resonance venograms) to see the actual area of stenosis. The doppler scan points to the direction of blockage, but you need to actually know where it is, to get relief.

There'll be alot more info on here. Jeff's post op one week from his dual jugular stent procedure (written up on regimens) His jugulars were both seriously closed up and refluxing (pattern c) Please keep us posted, and let us know how things go for you-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

No, you wouldn't think so would you. However, he read the paper the first time, and came back with a valid point that he "did not see how this could lead to MS". So I provided him Dr Simka's info and told him of Jeff's history (that I had only partially read the night before) and he read Dr Simka's theory (and Zamboni's diagram explaining his belief from his presentation) in front of me and actually on the spot raised the possibility of looking into it himself. I think this speaks BUCKETS in his ability to be open to new theory's, considering he is working with what is considered one of the current best possibilities for MS. He also asked me to resend him the original articles, before which I read about Dr Dake, and have now passed this info onto him as well. If he takes it further, he may contact Dr Dake, and you therefore have a neurologist (I would think with many connections) talking to the vascular guy.

I will also be passing this info on to the neurologist who was involved in my doppler tests. I think there is a strong chance they may even already know each or of each other.

I agree with you 100%, I think the doppler is just the poor man's quick check, and you can read Zamboni's articles that he used it as a means to get approval off the ethics committee to do his venographys.

I am really glad for you and jeff, even if this isn't the be all and end all, it certainly is "a GIANT step for mankind".

One question I haven't seen answered in your posts (hey, I was away for a month, and had to read page 35 through to page 50 of the CCVI thread), is if there is any measurable difference in Jeff's EDSS / disability? I know its very early.

ahhh... has anyone contacted Montel Williams or the Osmand? or even someone else in the media's eye, with MS?

I have a cunning plan... In Australia, the current affairs news programs have points on their web-sites for viewers to suggest a story. I am going to suggest this for a story, and to make it a bit of a tear-jerker (ie ratings) suggest they "sponsor" someone I know with 2 kids, a wife, worked as a police officer etc etc etc with a pretty crippling disease course.

OK, I sent a quick but sober email to the address on both these peoples public web sites.

Cure...
I have heard from Zamboni's foundation, and there will be a formal press release coming soon. I think it would be best not to steal the good doc's thunder. He has been working on this for twenty years. I sort of feel badly for taking some of the wind out of his sails by broadcasting CCSVI before he was able to bring forward all of the research. We have only seen the tip of it published so far. I do think it's best to let him and his team bring it forward, with ALL of their results. It's not that long to wait, OK? I didn't want to have to do this, but I'm afraid of us going full tilt with only part of the research.

Everyone will know more at that point, and the doctors will have more facts to study. I have a journal in the regimen section on Jeff's progress. So far, in one week- fatigue is remitted, brain fog has cleared, leg pain is not everyday (more like every 3) numb patch on left foot is gone, bloodshot eyes are clear, spasms are less intense.
Here's the thread:
http://www.thisisms.com/ftopict-7191.html

Dr. Dake is an interventional radiologist/endovascular surgeon. He operated on Jeff to relieve headache and edema from blocked jugular veins. He is writing up his research later after treating more patients. He has met with Dr. Zamboni and believes this is the real deal, and is now working with him. He will be speaking with his neurologist colleagues at Stanford after he's compiled his research.

I know you think your doc has the best intentions, and I hope he does. But you may want him to wait until he has a chance to read all the research.

Let's just be patient and let the research speak for itself before we go nuts with the press and public figures? OK? There will be a more compelling argument forthwith...
thanks,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS