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

Postby cheerleader » Tue Sep 29, 2009 12:56 pm

Jamie wrote:It didn't get lost in translation, hence me bringing it up.

yeah, we talked about it in Bologna, too, Jamie. It's the neuros that are asking for the blinded surgical study as proof. They think CCSVI treatment has and unfair advantage- that the surgery has a placebo affect. pu-leeze.

I'm still going to suggest the oligoclonal testing of CSF fluid and the SWI-MRIs before and after. Regular MRI just won't cut it. That should be plenty of proof of efficacy to keep the neuros happy.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Tue Sep 29, 2009 1:42 pm

I think the SWI mri's will replace regulars for MS sooner rather than later based on what I read on the post about them. Doesn't even sound like a contest!
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Postby Jamie » Tue Sep 29, 2009 1:48 pm

Cyclops wrote:Jamie,

Great news that Mel is doing so well - long may it continue.

You mentioned Dr D is off to Liverpool - any idea who he's off to see? It would be great if we had some British docs on board.

Cyclops


Hi.

It's a meeting of the British Vascular Surgeons society where Dr. Dake is getting an award I think. Non-MS stuff - his 'day job' I guess!

Hopefully he'll at least mention it!

Jamie
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Postby LR1234 » Tue Sep 29, 2009 2:23 pm

I bet my vascular Prof is going there. hopefully he can talk to Dr Dake and get the treatments going in the UK. (He is still sceptical)
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Postby MrSuccess » Tue Sep 29, 2009 2:25 pm

Neurologists are intelligent and educated people. They ask intelligent and educated questions. Joan , I don't think 'pul-eeze ' is a good reply to their position. Because you are also an intelligent and educated person .

Was it GiCi who pointed out that CCSVI was a procedure NOT surgery ?

Maybe doing some blinded studies might be possible ??? :?:

So far I have not seen any reason or proof why CCSVI is to be discredited. It looks very promising.

I might have to do some research on this 'placebo effect ' I keep reading about . It's mentioned in almost every drug trial out there.

Anyone able to point me in the right direction ?

In the mean time ...let's remember to be kind and respectful to all that are helping in the MS battle. Especially our Neurologist buddies ! :)



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Postby Lyon » Tue Sep 29, 2009 2:26 pm

oo
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swi-mri?

Postby jay123 » Tue Sep 29, 2009 5:00 pm

Sorry, haven't heard about that one - what is it?
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Postby NHE » Tue Sep 29, 2009 11:26 pm

cheerleader wrote:It's the neuros that are asking for the blinded surgical study as proof. They think CCSVI treatment has and unfair advantage- that the surgery has a placebo affect. pu-leeze.

I'm still going to suggest the oligoclonal testing of CSF fluid and the SWI-MRIs before and after. Regular MRI just won't cut it. That should be plenty of proof of efficacy to keep the neuros happy.
cheer


My heart also sank a bit when I read that Dr. Dake was considering a placebo arm for the trial. This isn't just some drug which may or may not have some benefit, it's blocked blood flow potentially causing physical damage to people's brains. I hope that they can establish some other type of control for their study. Perhaps they could do a comparison to one of the CRAB drugs. That shouldn't be too hard and it should make for an interesting comparison. A precedent has already been set in published journal articles where new treatments are often compared to established treatments.

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Postby CureIous » Tue Sep 29, 2009 11:33 pm

:)
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Postby Brainteaser » Wed Sep 30, 2009 11:11 pm

I'm not completely sure of Bob's motive for yesterday's post regarding the 'placebo' effect of surgery but I'd be very disappointed if he's trying to intimate that there is any kind of connection between the work of recognised medical experts such as Messrs Dake and Zamboni and that of Filipino faith healers. If that is the insinuation, for a variety of reasons, I think we are heading into very dangerous territory.

Similarly, I also believe it is irresponsible and quite possibly something with serious legal implications for neurologists who might encourage patients to enter a CCSVI 'trial' where the required surgical treatment is not guaranteed. Patients submitting to trials for new MS medications is one thing - after all that's clearly the neurologists' domain. But with CCSVI, the lines of medical demarcation are more blurred. It might even make for a good Hollywood movie of a legal trial where a patient's health is worsened after not receiving the correct medical treatment as recommended by a radiologist or surgeon viz. CCSVI intervention, but rather follows the neurologist's advice and submits to a blinded trial in order to satisfy the neurologist's idle curiosity regarding a connection between CCSVI and MS.

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Postby Rokkit » Thu Oct 01, 2009 7:00 am

Brainteaser wrote:I'm not completely sure of Bob's motive for yesterday's post regarding the 'placebo' effect of surgery but I'd be very disappointed if he's trying to intimate that there is any kind of connection between the work of recognised medical experts such as Messrs Dake and Zamboni and that of Filipino faith healers. If that is the insinuation, for a variety of reasons, I think we are heading into very dangerous territory.


I'm pretty sure Bob was just pointing out the power of the human mind to believe what it wants.
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Postby radeck » Thu Oct 01, 2009 8:41 am

pointless - removed
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Postby Lyon » Thu Oct 01, 2009 2:48 pm

oo
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Postby MrSuccess » Thu Oct 01, 2009 7:49 pm

Placebo surgery seemed so bizare to me that I had to do some digging around on the Net , to find out if it was real.

From what I have read...it HAS been done . BUT ....it is the Internet and I still want to see more proof before buying into it.

Check it out yourselves ......google placebo surgery

Let's say placebo surgery is safe and not too risky .....then including it in any CCSVI study can only help in proving the CCSVI theory .

And that's good for everybody.

All bonifide clinical trials include placebo arms . When you research

placebo effect , you will see why. It is amazing.

And that I guess ....is why Neurologists insist on seeing CCSVI include placebo arms in the trials.

It seems fair to me.


Any volunteers ? :twisted:




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Postby mrhodes40 » Fri Oct 02, 2009 9:52 am

Doing a placebo trial would be easy: do everything exactly the same, send everyone to surgery, do the venogram, but only add stents to some patients, other patients document the stenosis but do not add a stent. As long as they did not realize they never had the stent it would work out. It'd be pretty tough for a patient who had the neck pain though to not understand that he had high jug stents.

The ethical consideration comes in with regards to leaving a stenosis and whether or not that is ethical, that is the real debate and rub. The neurological community may want to pretend that perhaps it is TOTALLY BENIGN to ignore such an anomaly in a human being, like maybe it doesn't matter at all and there is no ethical dilemma to leaving people like that so that a scientific question can be answered...

but in reality circulation is physiology 101. You cannot impair circulation and expect the tissues in question to be healthy. They can't do it.

There comes a time when something is bigger than the scientific question and I think this is one of those things. Science is there to answer questions when the question offered has no known answer* in the known medical body of knowledge. The question of circulation and the value of maintaining and restoring it is not unknown. just MHO.

*like "does this chemical compound ditucoride which causes immune suppression by an unknown mechanism stop the disease SPMS which is thought to be autoimmune but is not proven to be"
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
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