Legal fears thwart doctor's bid for ‘liberation' from MS

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

Re: Legal fears thwart doctor's bid for ‘liberation' from MS

Postby fogdweller » Thu Apr 29, 2010 11:18 am

squiffy2 wrote:Legal fears thwart doctor's bid for ‘liberation' from MS pain - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954


We need to separate the irrational fear of complications between veinoplasty and stents!!! No adverse events, to my knowledge, have been attributed to veinoplasty ("the liberation procedure"). Yet the two adverse events at Stanford, both with stents are thrown up as justification for stopping ALL treatment.

Angioplasty is very safe, has a very long history in the arteries and the periferal veins and elswhere, with very very few adverse events. Can Tysabri say that?

Perhaps stents in the jugular veins need some further study before they become widely available. However lumping stenting and angioplasty (veinoplasty really) together is really ignorant, something vascular surgeons and IR doctors would not do but seemingly no problem for neuros.
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Postby zap » Thu Apr 29, 2010 12:41 pm

blagh, a skepticism-inclined friend on Facebook just posted this:

Restricting this procedure while trials are under way (which they are) is entirely appropriate. It isn't benign (there has been at least one death, so far), and there is no hard evidence yet of efficacy. As for the reported effects: They really could be placebo.

Check out this (in text below) over the top piece on a "s...tem-cell treatment" performed by a dodgy Mexican "institute". It is almost certainly a worthless procedure (stem cell treatments are a decade+ away from clinical application), but note that the reported effects are similar to what the MS patients are reporting here. http://cnews.canoe.ca/CNEWS/Canada/2010 ... 6-qmi.html


So now I gotta argue with him ...
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Postby drsclafani » Thu Apr 29, 2010 8:20 pm

prairiegirl wrote:...pretty sure you have the wrong doctor. I think you mean Dr. Schelling, not Sclafani (although Dr. Sclafani will probably enjoy this story :D).


you did get it wrong

i was the one who discovered america
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Postby MSUK » Thu Apr 29, 2010 11:08 pm

:lol: :lol: :lol:
MS-UK - http://www.ms-uk.org/
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my blond moment

Postby silverbirch » Fri Apr 30, 2010 3:59 am

How funny it was my blond moment....

Any how all jokes aside - would I be correct in my thinking that this was indeed presented 30 years ago and was dismissed back in the day ?

Dr Sclafani see how rumors start people like me getting it all wrong .. hope it gave you a giggle xx

Many Thanks to the guys that correct me xxx]
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Postby girlgeek33 » Fri Apr 30, 2010 4:15 am

I do have to speak up to keep the rumor mill in check. Dr. Bonn will be back in business as soon as he can get IRB approval. The way he was stopped was highly uncalled for. BUT, it was not outside influences but his own radiology department's legal practice that stopped him. There were a couple of concerns and they had nothing to do with the procedure itself. There needs to be language added to the consent forms was one of the big concerns by legal. I also have come to find out that there was concern with people coming from out of country and from areas that insurance may not readily cover this and would the hospital get stuck with bills not being paid. So, this was all about covering @ss. He will be back up and running as soon as he can.
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yeah legal issues

Postby scotland » Fri Apr 30, 2010 6:59 am

Hi
At some tipping point , this will become more of a legal issue if they do not treat it.

Negligence is failure to do, or not to do something that a reasonable and prudent person would do, or not do in a given circumstance. The omus is higher for professionals obviously.
At some point, with the 70-90% comcurrence, everyone should have their circulation problems investigated for ccsvi. Testing is easy and a no brainer.
Here we are, all progressing at various speeds downhill, while the worlds biggest game of legal footsie is getting wound up.

Its fine to, first "do no harm" , but do something.
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Re: yeah legal issues

Postby girlgeek33 » Fri Apr 30, 2010 7:14 am

scotland wrote:Hi
At some tipping point , this will become more of a legal issue if they do not treat it.

Negligence is failure to do, or not to do something that a reasonable and prudent person would do, or not do in a given circumstance. The omus is higher for professionals obviously.
At some point, with the 70-90% comcurrence, everyone should have their circulation problems investigated for ccsvi. Testing is easy and a no brainer.
Here we are, all progressing at various speeds downhill, while the worlds biggest game of legal footsie is getting wound up.

Its fine to, first "do no harm" , but do something.
Scotland


I do agree and I've felt this completely felt like discrimination as I was hearing of all the trouble so many have been having simply because we have MS. And in countries like Canada & England, from what I have heard with the govt coming outright saying no if you have MS, that IS discrimination. In the US, I've learned more about the process and in the few cases that it has been forced to go to IRB before continuing, it is within the process of what the hospital should be doing to protect the patient as much as protect themselves. If the IRB comes back and refuses to treat us because we have MS, THEN we can all get in an uproar and raise the discrimination stink. And there are those in the US that want to start class action cases but while the hospitals are doing what they are supposed to be doing, we don't have a case. I hate that this is the way things work. I suppose that if it weren't such an easy procedure to make such a huge difference in our lives, we would be more appreciative that they put the brakes on while they dotted their Is and crossed their Ts. Since it is so widely practiced and done all the time for other reasons, then it should get through IRBs and then open to be available to us without ay trouble...

Would be great if we could do something that would open up the red tape in one fell swoop to be available everywhere. I suppose that is naive but if anyone has any ideas on how this is possible, like doing it for all the states in the US, would love to know how we begin to get this done...
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Re: yeah legal issues

Postby Cece » Fri Apr 30, 2010 7:43 am

girlgeek33 wrote:Since it is so widely practiced and done all the time for other reasons, then it should get through IRBs and then open to be available to us without ay trouble...


For now we have no reason to believe that this won't happen.

If doctors are thinking, this procedure is so simple, we don't even need an IRB at all...and it's only because of the controversy that the legal or admin is stepping in with the requirement of an IRB...then I think IRB approvals will be coming in by the bunches in the next few months.

It really is a simple procedure.

I think however hospitals billing departments could be right that there is a risk of nonpayment, especially if insurance companies balk. Maybe that will be the next big hurdle...but it will take more than a hurdle to stop this, at this point...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby prairiegirl » Fri Apr 30, 2010 8:09 am

drsclafani wrote:
prairiegirl wrote:...pretty sure you have the wrong doctor. I think you mean Dr. Schelling, not Sclafani (although Dr. Sclafani will probably enjoy this story :D).


you did get it wrong

i was the one who discovered america


Dr. Sclafani, I just want to thank you for discovering America-- oh, and that other stuff you're doing re CCSVI treatment :D
Thanks for injecting your humour into your postings-- you are one funny dude!
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