MS therapy divides

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

Postby erinc14 » Fri Aug 13, 2010 1:00 pm

it's drug company bs. be careful what you read .
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Postby jimmylegs » Fri Aug 13, 2010 2:57 pm

people who are early adopters of an experimental procedure, and who light the way for the rest of us by making themselves the subjects that doctors hone their skills on, and who suffer consequences as a result, have made a sacrifice in my view.

pharma bs are you serious? i wash my hands of this
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Postby jimmylegs » Fri Aug 13, 2010 3:01 pm

repost:

scorpion, getting back to the point of your original post, this just got posted under general discussion:

http://www.thisisms.com/ftopicp-128869.html#128869

a site for finding commonalities. interesting and well done. check it out!

(also skewed to the UK, that should be easily remedied )
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby concerned » Fri Aug 13, 2010 4:42 pm

erinc14 wrote:it's drug company bs. be careful what you read .


Yeah, you wouldn't want to stumble upon something that disagrees with you, right?
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Postby 1eye » Fri Aug 13, 2010 9:21 pm

Stumble on it, or have it re-posted by several (?) people with shared misguided scruples that get in the way of their senses of humour. 'MS' is a terrible thing, in how it can sometimes cloud your judgment and make you obsess. I do not hold any of this against people. All is forgotten, especially the joke. What were we talking about? Oh, yes, divisiveness. Let us not let it divide us. I don't feel divided, do you? No? Glad to hear it. :o :) 8O :? :lol: :lol:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby MrSuccess » Fri Aug 13, 2010 11:04 pm

Is it just me or are other people finding the logic in this discussion .... bizarre . :roll:

Fact : ONE unfortunate pwMS had a serious incident while undergoing CCSVI treatment. As far as I know ..... the reason this happened has never been revealed. I suspect ... a faulty stent .

In time we will know more .

Like most CCSVI followers ..... I was taken back .... with '' R's '' misfortune . However .... the situation was remedied ... and a great deal was learned . Until Dr. Zamboni gives his consent to stent installations ... I would not do this.

Yes .... I know Dr. Simka is stenting left ....right ... and ... centre. :roll:

What I find the most interesting of all ....... were those pwMS that upon examination for re-stenosising [sp ] < 4 those watching for correct grammar :wink: .............. when Dr. Zamboni repeated his Liberation treatment ..... once again ..... the pwMS regained some improvements .

Some in hours .... others in day's ...... remarkable .... amazing ..........

This is why I think CCSVI is the real deal .




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the realer dealer

Postby 1eye » Fri Aug 13, 2010 11:22 pm

MrSuccess wrote:This is why I think CCSVI is the real deal .
Mr. Success


Plus there's the statement made by Dr. Murray in a Parliamentary Subcommittee meeting, that if everyone got Liberated "no-one would go in a trial." Could this be because he believes it WORKS? So everyone would be CURED? Yippeee!
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Postby Cece » Fri Aug 13, 2010 11:38 pm

MrSuccess wrote:This is why I think CCSVI is the real deal .




Mr. Success

I think it's the real deal too.

But I do not think a faulty stent was the cause of the migration. If first one stent was placed higher up in the jugular, and then a second was placed lower down, the placement of the second stent may have changed the flow enough that the area where the first stent was placed was no longer secure.

One of the doctors from the recent symposium, I can't remember which, has said that when he has treated the lower area and then worked on a different vein and when he'd come back and check the first area a half-hour later, the upper narrowing would already no longer be narrowed.

So I think this is something to be cautious of if anyone is getting multiple stents.

Better to divide than to multiply. :)
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Postby marcstck » Fri Aug 13, 2010 11:52 pm

MrSuccess wrote: As far as I know ..... the reason this happened has never been revealed. I suspect ... a faulty stent .

Mr. Success


I have spoken personally to the unfortunate soul involved in this incident, and I don't think I'll be breaking any confidences to simply say that faulty hardware was not the reason behind the stent migration…
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Postby Johnson » Sat Aug 14, 2010 1:21 am

marcstck wrote:
MrSuccess wrote: As far as I know ..... the reason this happened has never been revealed. I suspect ... a faulty stent .

Mr. Success


I have spoken personally to the unfortunate soul involved in this incident, and I don't think I'll be breaking any confidences to simply say that faulty hardware was not the reason behind the stent migration…

I never had the impression that faulty hardware was an issue. radek was a very early adopter, truly a pioneer, and his experience added a knowledge that is invaluable. He did invite me to telephone him, but I have a problem with telephones, and am unable (bit of weirdness). Did he make a sacrifice for the rest of us? I doubt it. From my own experience, it was all about being rid of the demon, and having some of my life back. I honestly did not think of anyone but myself in the week before, or week after (other than my kid). I have been told (by People without MS), that I am brave for going to Poland. Pshaw! I am not brave enough to face more blackness. I was not desperate either, but it all made sense to me. I had the procedure and experienced a great, and very real benefit. It did not last. Because of radek's story, and because of Doc Sclafani, Doc Sinan, and a lot others' views, and from my own sense, I won't have stents, and not because of worries about migration. (what is the topic again?)

For the record; Dr. Simka is not stenting left, right and centre. In my cohort of six, only one received but one stent. She has had the most profound improvements (was in a wheel chair). Furthermore, Dr, Simka is into radiology, and does not do the surgeries. He may have been present, but due to the gas I was given, and the fact that I could not look around, I do not know. He did tell me when he scanned me that he thought that I would need a stent, but that was not the case in the procedure.

From my perspective, and at least 4 others of we six, CCSVI, and the Liberation Procedure are the real deal. It seems to be not necessarily so that the lesser the disability, the greater the recovery, either. I think, from my cohort, SPMS and PPMS will have a harder row to hoe. Although I am "classified" as RRMS, I think that I have been "SPMS" for the last 10 years, or so. My relief was immediate, and in some measures, long-lasting. Cognition was one area that I saw no improvement, and a continued worsening.

I am now completely lost.

Am I even vaguely on-topic?
My name is not really Johnson. MSed up since 1993
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Postby jimmylegs » Sat Aug 14, 2010 3:59 am

:roll:
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby erinc14 » Sat Aug 14, 2010 5:48 am

concerned wrote:
erinc14 wrote:it's drug company bs. be careful what you read .


Yeah, you wouldn't want to stumble upon something that disagrees with you, right?


whatever :roll:
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Postby scorpion » Sat Aug 14, 2010 5:57 am

Hey I am not missing out on this!!!!

:roll:
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Postby Billmeik » Sat Aug 14, 2010 6:11 am

What I find the most interesting of all ....... were those pwMS that upon examination for re-stenosising [sp ] < 4 those watching for correct grammar .............. when Dr. Zamboni repeated his Liberation treatment ..... once again ..... the pwMS regained some improvements .

Some in hours .... others in day's ...... remarkable .... amazing ..........



ya but we need to trap for causative order. What if the ms attack happened first causing restenosis? This could be ruled out if someone got a dated image showing restenosis and then had some kind of proof when the ms attack happened...hmmm.
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Postby MrSuccess » Sat Aug 14, 2010 11:37 am

marc - nothing beats getting information first hand . In time the good doctor involved will publish the true story . As far as I know .... nothing has been proven .... one way or another.

Left ... right .... and centre .... is a figure of speech . For those unfamiliar with this term .... it means '' lot's'' .

Dr. Zamboni does not perform his Liberation procedure .... his team does.

Let's not split hairs . :twisted:

BILLM- perhaps reviewing Dr. Zamboni's published reports AND viewing some video of Dr. Zamboni being interviewed on his findings ..... will put your concerns to rest :idea:

This will require a considerable amount of research and study ..... if you came onto the CCSVI story late.

To simplify : A wilting flower was given water. The flower responded favorably and again stood up. soon ....... the flower wilted again .... again more water was given ...... and again the flower regained it's posture

Do you think the watering process might have some effect ? :idea:




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