spreading the ccsvi word

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

Postby peekaboo » Wed May 13, 2009 8:20 am

cheer wrote:

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


Any eta on Z's press release...I agree we don't want to take anything away from Dr. Z's work and credit due. I if it weren't for him....( & you, marie, digman)

Do you think it would upset the balance for others to search for their own CCSVI treatment in lands far away from Calif.? (using data thisisms folks have found to seduce probable therapy) All info regarding CCSVI is public Did we open a pandora's box? :?
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Postby cheerleader » Wed May 13, 2009 8:36 am

peekaboo wrote:
Any eta on Z's press release...I agree we don't want to take anything away from Dr. Z's work and credit due. I if it weren't for him....( & you, marie, digman)

Do you think it would upset the balance for others to search for their own CCSVI treatment in lands far away from Calif.? (using data thisisms folks have found to seduce probable therapy) All info regarding CCSVI is public Did we open a pandora's box? :?


I think it's fine to look for docs, spread the word in the university medical communities, talk about this here on TIMS, let each other know...heck, I wouldn't have found Dr. Dake if I hadn't been a spreading the word....every MS patient deserves to find out if CCSVI is part of their MS. it's just the reaching out to the media or "star" MS patients with only part of the story that seems not such a great idea. Official release in the next month or two.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Wed May 13, 2009 8:57 am

thanx cheer for clarifying...there is still lots to do this way.. :D
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Postby peekaboo » Wed May 13, 2009 9:11 am

the following are searched using Dr. Z for URL's from vascular symposiums world wide where you may find appropriate doctors in your part of the world.



http://www.isvd2008.com/faculty.html

http://www.phlebolymphology.org/pdf/spe ... part_4.pdf

shortened url[/url]

shortend url
Last edited by peekaboo on Wed May 13, 2009 10:30 am, edited 16 times in total.
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Postby mrhodes40 » Wed May 13, 2009 9:41 am

Pkboo great links!!

If you use the little URL thingy at the top of your typing box when you edit the page won;t be all wide.

Hit the url thing then move your cursor just inside the [ u r l = ] and add an "equals" like that then put the long long address right there after it.

Then type something like "shortened url" then click the url button again and the close url thing will come up right after what you typed so it will look like this without the spaces--don't let there be spaces inside the brackets or it'll mess up.
[ u r l = http,www,whatever ]shortened url [ / u r l ]
If you ever do it and it does mess up, look for a space somewhare-inside the brackets it should be all close together
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
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Postby peekaboo » Wed May 13, 2009 10:32 am

that ain't easy :roll:
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Postby cheerleader » Wed May 13, 2009 10:33 am

peekaboo wrote:that ain't easy :roll:


Ha! It took me over a year to learn how to do it, so you're a quick study, Peek! Thanks for the links-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed May 13, 2009 12:21 pm

Well and I want to be sure that we all take due note: Dr Zamboni has been working on this for 20 years, not 3 as it appears when you note his presentation documented in "The Big idea..." that was published in '06 (see research sticky thread)

I am very interested in the entirety of his materials; I understand that Dr Dake already has seen some of this material and through his comments believe it is really good, but it will be wonderful when itis available to everyone who is interested....and everyone who is trying to get a local MD interested in testing.
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
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Postby CureOrBust » Thu May 14, 2009 5:56 am

cheerleader wrote: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.

I can truly understand your concern, however, I have to say I disagree at this point. Zamboni has published numerous articles, so, people will know it was from him. Not wishing to put words or thoughts into Zamboni's mouth, but when confronted by Dr Dake, he apparently was very forthright with information.

And if two Australians can get a knobel for stomach ulcers (which they personally admit involved an accident of dumb luck), I feel that Zamboni would definitely get my vote! I'd buy da T-shirt! :)

My "concern" is that there are people out there who do not have access to the internet, or have not been as lucky as we have been to stumble accross this news, but could be in MUCH worse condition than us. They need hope, they need to know. Hate to get all dramatic here, but its bigger than us, or Zamboni or who gets credit. Peoples lives are involved here. Mothers, fathers, children and siblings. I am "lucky" in that I could wait a few months, however, others out there are at the end of their options with 6+ EDSS's, and no will to live. :(

cheerleader wrote: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.
I have seen, and I think I understand how he thinks. These people are not idiots, they will not make a decision now that they will NEVER go back on once all the proof is in place. Even if they disregard it now, I am sure he has too little time to waste on sabotaging Zamboni's work. And I couldn't even think of an EFFECTIVE way he could.

cheerleader wrote:Let's just be patient and let the research speak for itself before we go nuts with the press and public figures? OK?
Sorry, but as you guessed, I have to say "no" right now. I personally can afford to be patient as I am about EDSS 3.5. If I was at the upper ranges of EDSS, I do not think I would of been around right now to wait. There are people doing it a lot tougher than me. :cry:
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Postby cheerleader » Thu May 14, 2009 8:13 am

I get it, Cure. Believe me.
In a few months, hopefully this discussion will be moot...
I talked with a woman yesterday who was given my phone # by a friend of a friend (Jeff's story has travelled). She is a 6+. No ability to use computer, pretty much housebound. Her husband just left her. We spent an hour talking. She's had MS for 25 years, and couldn't believe that there was a mechanical, physical connection to the disease. She kept saying, "but how can this be?" I gave her all the numbers, and our mutual friend is going to travel with her to get her to Stanford. It broke my heart to hear the pain in her voice...and she is one of so many. I get it. This is bigger than any of us as individuals.

We need more doctors to help carry the load.

I know Jeff wasn't as disabled...his damage was to his brilliant mind...but he has always been ambulatory. His EDSS never could show what he had lost over 20 years. Nor can it show what has been gained in the last week. How can a number define a human being? He was just "lucky" enough to be married to a crazy woman...

I really, truly hope you can find some doctors willing to look at this paradigm for you, Cure (after all, that is your name!) that you can be the conduit in Australia and the world to hope and healing. Sorry if I came off as possessive or b^tchy. I just want the whole story to be told, before TPTB try to discredit the research. Paranoid? Maybe....Time will certainly tell on this one.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Thu May 14, 2009 9:39 am

cheer wrote:
Jeff's story has travelled).


I am not surprised...just look at all the hits/views CCSVI has, tops some longterm forums. This proves there in great interst inthis model :!:

cheer wrote:
Her husband just left her

Unfortunately this is not unusual for partners of ms'rs leave them. It is saddening.

It is good to hear she can count on someone.
our mutual friend is going to travel with her to get her to Stanford


do we have 10 yet for Dr. Dake?
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Postby Loobie » Thu May 14, 2009 11:02 am

I just piled on, so I bet we're close!
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How to get involved?

Postby seeker » Thu May 14, 2009 2:30 pm

I'm late to this party, but sounds interesting. I live in San Francisco so could easily make it down to Stanford. Could someone fill me in briefly on what I should know (what the procedure is) and who I contact at Stanford to get involved? Pardon my ignorance, and thank you.
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Postby peekaboo » Thu May 14, 2009 3:18 pm

I pm'd Angela's info sugested reading sticky CCSVI

for anyone who needs to know...

Angela M. Azure
Department of Cardiothoracic Surgery
Falk Cardiovascular Research Center
300 Pasteur Drive
Stanford, CA 94305
T: 650.724.0831
F: 650.725.3846
aazure@stanford.edu
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Postby Sharon » Thu May 14, 2009 3:30 pm

Yesterday I went to see my chiropractor - took a copy of Zamboni's 2008 report. Today he requested more information - he treats about 50-60 MS patients. Marie thanks for the link to the report written by the chiropractor "Craniocervical Spine and Multiple Sclerois" I sent that to my doc also. He's interested.

I also received an email from the Myelin Repair Foundation. The report is being reviewed by the research team.
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