Loss of a chance of a cure

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

Postby Moom9335 » Mon Dec 21, 2009 5:27 pm

For the record, Of course MS ers want to be tested by someone properly trained in the Zamboni/Haacke procedures. That message was implicit in my post. And, I honestly read remarks, especially on CCSVI in MS on Facebook from people who have done the reading, research and know lots about the Zamboni method.

Every so often, someone new to the Zamboni news makes an assumption that is incorrect. By and large, they catch up and are in the know and up to date. And, many of us are working seriously and locally in avenues that are in the formative stages of informing, educating and lobbying for Zamboni/Haacke . MS ers are a serious group....with good reason.

Let's keep it together, informed, cohesive and RAISE MONEY. Donations can be sent to Buffalo for the trials as Dr. Embry has mentioned. And yes, I have put my money where my mouth is. And, a tip of my hat to him because he is not going to let CCSVI crash and burn because of politics, turf protection or whatever.

Now, if only Montel, Dr. Oz, Dr Weil or one of the biggies would take up the cause. Looking forward to the US publicity soon.
User avatar
Moom9335
Family Member
 
Posts: 72
Joined: Sun Dec 06, 2009 3:00 pm
Location: Michigan

Advertisement

Postby ozarkcanoer » Mon Dec 21, 2009 6:05 pm

CureIous,

Reality Check accepted....

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby ikulo » Mon Dec 21, 2009 6:12 pm

Ana, in order to have a successful cause of action you would have to prove, inter alia, that a doctor breached his duty of care and that the breach caused damages. For the breach, in most jurisdictions you would have to prove that the doctor was below the standard of similar practitioners. As we have seen, the standard of the industry (and it is their standard, and it doesn't matter whether you think it's right or not) is that doctors need more than a few studies to perform a procedure such as stenting. OF course, this would become a battle of experts, and considering the small number of doctors who perform this procedure, you would likely not meet your burden of proof. However, if a doctor refuses to prescribe tests, then you may have a better chance, but still very slim. Finally, you would have to prove damages. This means two things. First, you can only prove damages once those damages have been caused - so you couldn't sue anyone now for something that MAY be done to you in the future because you would not have any evidence of it. Second, you would have to show "but for" the doctor's refusal to perform the procedure, you would not have sustained your injuries. This claim is tenuous at best, especially in light of the variable course of this disease. How could you prove that you would not have progressed in this particular way...? Anyway, this is obviously not legal advice, and a person should consult an attorney licensed in their state. However, if you're interested, since you are a judge and may have westlaw/lexis access, you can have a peak at the practice guide for Medical Malpractice, Loss of Chance of Cure here: 4 Causes of Action 2d 1
[/b]
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 2:00 pm
Location: colorado

Postby Arcee » Mon Dec 21, 2009 6:16 pm

It takes TIME to educate people, and patience, and persistence, not "link dumping"


Mark, I agree with you, but want to point something out so as to encourage those of us who may not excel at the 'time' and 'patience' part of educating people: there are lots of things to do to move everything forward. If you are a good fit for educating people, more power to you. And if that is not your thing, then do something else - - reach out to the medical community or the political establishment. Raise money. There are any number of things that an individual can do.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby Johnson » Mon Dec 21, 2009 6:25 pm

CureIous wrote:I sure do appreciate the caregivers that are in here though, advocating, fighting, pursuing, but they are the exception, not the norm. It might not seem that way, seeing that everyone HERE gets it, at a minimum, but multiplying our efforts is the ONLY way this is going to work, and having a select few with the "goods" is not good enough. It takes TIME to educate people, and patience, and persistence, not "link dumping".


Good write, Mark. We need to have as complete an understanding as we can, and cut it down to something understandable for the layman, and intriguing to the complacent practitioner.

Any new-comer ought to read all 58 pages of the intro to CCSVI on this forum, and all available papers by Zamboni, et al - which are easy to digest - before asking where to get it done. If everyone arms themselves thus, we will have an army of educated stakeholders to get it done where we live.

I want to second that appreciation of smart, caring, determined caregivers. I hope they know what it means to those being cared for. I'm sure they have a good idea, but after marching through the wilderness for so long alone, I can say that is huge.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Postby muse » Mon Dec 21, 2009 6:40 pm

Ana,
I’ve wrote it already in the csvi-forum and I’m going to repeat it here again that your thinking is spot-on! I will be happy to go the extra mile with you to stop "doctors" who are trying to hinder us in getting simplest human rights, in getting tested with a non-invasive MRV or a doppler sonography!
Best
Arne aka muse
18/11/09 diagnosed with CCSVI in MS at my own expense
http://www.csvi-ms.net/en
Last edited by muse on Mon Dec 21, 2009 11:31 pm, edited 1 time in total.
User avatar
muse
Family Elder
 
Posts: 180
Joined: Wed Aug 05, 2009 2:00 pm
Location: New Zealand

Postby CureIous » Mon Dec 21, 2009 6:54 pm

Arcee wrote:
It takes TIME to educate people, and patience, and persistence, not "link dumping"


Mark, I agree with you, but want to point something out so as to encourage those of us who may not excel at the 'time' and 'patience' part of educating people: there are lots of things to do to move everything forward. If you are a good fit for educating people, more power to you. And if that is not your thing, then do something else - - reach out to the medical community or the political establishment. Raise money. There are any number of things that an individual can do.


ABSOLUTELY. Work with your strengths, work ON your weaknesses. Everyone has something to contribute. I didn't preach the sermon, but had a ton of fun piling the chairs up at the end of the service with everyone else.

Mark.

Sorry for the thread hijack.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby judipom » Mon Dec 21, 2009 9:40 pm

Ana--This is good information. I am all about being as proactive as we can on the CCSVI front--but I have to say I got a little discouraged when the recent article from Buffalo cited 2-4 years before this could be seen as a therapy for MS. We all know what MS does over time. I've written my local newspaper, called local universities, contacted vascular surgeons, and wrote my congress person. So far I have been unsuccessful in getting scanned for CCSVI. I'll keep it up, but at some point.... Forewarned is Forearmed. Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
User avatar
judipom
Family Member
 
Posts: 68
Joined: Tue Nov 24, 2009 3:00 pm
Location: Chapel Hill, NC

Postby Ana » Tue Dec 22, 2009 6:09 am

Thanks for the many answers.

I want to point out that I also believe it is probably too soon to even consider a law suit. Also in Germany you need an intensional or negligent harm of the body, a damage and the prove of causation. And I don't say that there should be in any case an action. I just want to express that this opportunity exists and that the people who are even denying simple MRT/Doppler tests to the patients should think about it.

But I see things like this http://www.thisisms.com/ftopict-9201-.html which makes me really angry. I think that it should be told to all those "nice" people there who get a kick out of denouncing Prof. Zamboni that there is a limit and there might be a times to come when they will have to justify their statements and behaviours. I don't want to get uncritical reviews on Prof. Zamboni's researches, only fair ones like e.g. the French did: http://www.thisisms.com/ftopict-9240.html

I don't wan't to threaten doctors but time has shown that the only way is to do some pressure as patients.
User avatar
Ana
Family Member
 
Posts: 93
Joined: Mon Sep 07, 2009 2:00 pm
Location: Germany

Postby sbr487 » Tue Dec 22, 2009 6:55 am

Ana wrote:I don't wan't to threaten doctors but time has shown that the only way is to do some pressure as patients.


As a matter of fact lot of sufferers like us have more appreciation for Doctors than normal people. But when highly educated people like these go to the extent of demoralizing someone's dedicated effort, nothing can be more irritating. But at the end of day, people who were selfishly downplaying CCSVI pay for it. I have not doubt about that. When that happens, definitely I will not be enjoying their grief, but will never sympathize with them either ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 3:00 pm
Location: India

Frustration

Postby Rose2 » Tue Dec 22, 2009 7:27 am

Ana,
Thank you for yours ideas that come from the frustration we all feel.
I have a question for everyone.
Where can I go to be counted , seriously, as a Stent-er, who is greatly improved from my CCSVI procedure, after screening?
I feel like I am standing here, living proof and I want someone to look at me and say WOW!!
I want to share my results with everyone and don't want it buried in the back of some paper no one will read.
Does any one know how I can share my success in a BIG WAY?
Sincerely, Rose
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 2:00 pm
Location: SF area

how to publicise the successes

Postby Dovechick » Tue Dec 22, 2009 9:04 am

We need some insiders in the media... We are in contact with the people of New Pathways magazine, but this is not a widely read magazine. It circulates mainly in MS circles. I would really like to know how to attract the attention of the real heavies. Maybe we should write to newspapers that have a wider circulation, such as the Scotsman who are interested in the MS story as so many Scots have MS. I'm sure that there must be newspapers in other countries which have a special interest in MS.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK

Postby CureIous » Tue Dec 22, 2009 9:14 am

[quote="Moom9335"]

Every so often [quote]

I've read practically every reply on there, it's not "every so often", and there's very rarely a pointer back to this site any more. I'm not saying people are dumb, or can't get it given the proper information, not at all, most MSers are pretty keen on the latest treatments.

I doubt half the people posting there even know this site exists. Why is that? You tell me.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby Johnson » Tue Dec 22, 2009 4:09 pm

Rose2 wrote:Does any one know how I can share my success in a BIG WAY?


I think you already are here, but perhaps you could write letters to the editors of publications who dismiss or attempt to debunk the works and successes of Dr.s Dake, Zamboni, Simka, and their associates. Do the same for any producers of television media who are likewise hostile.

I would suggest not a rebuttal, but a testimonial. For instance - 'Dear Sir/Madame, I saw/read your opinion piece on CCSVI, and thought that you might be interested in the experience (and opinion) of someone who has had MS for X years, and also underwent the "Liberation Procedure" X months ago'. Tell your story as concisely as possible (1,000 words, or less. There are about 20 words per line here, to give you an idea.). Do the same for organizations who seem sympathetic, or curious - including your local paper and TV stations.

If it were me, I would tell of the difficulties, and uncertain greyness of life with MS, and how I would feel changed (I don't know yet, and I truly can't remember what it was like to feel "normal"). Send it to Neurological, vascular, radiology... publications, the MS Society - for their news letter! Send it to the Washington Post, New York Times, CBS, NBC, ABC, PBS, Andy Rooney, Oprah. If one pays attention, they all do. It's Christmas/New Year/whatever ones belief, and heart-warming, good news is always needed.

Okay. That was about 400 words. I was just getting warmed up... Maybe 500 words or less is better for keeping readers' eyes reading. Grin
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Thanks!

Postby Rose2 » Tue Dec 22, 2009 4:27 pm

Johnson,
Thank you for the guidance.
Writing and composition are my weakest points, but there are alot of friends who can fix it for me, I know that! Heck, I have friends that do it professionally, so I don't know why I ever hesitated or never thought of it.
I will make it my next labor or love.
Appreciate it all! Sincerely, Rose
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 2:00 pm
Location: SF area

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service