A conference of dr. Zamboni in January 2010

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

A conference of dr. Zamboni in January 2010

Postby balko » Fri Dec 18, 2009 3:48 am

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Postby MSUK » Fri Dec 18, 2009 4:38 am

Hi, is there any chance of an English version, and also a link to the organisers etc??

kind regards

squiffs
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Postby Algis » Fri Dec 18, 2009 4:43 am

January 23rd at Vicenza. More details as soon as available.
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Postby jay123 » Fri Dec 18, 2009 7:22 am

And this will be a very interesting one, American Academy of Neurologists 2010 Annual Meeting which takes place in Toronto, Ontario, April 10–17. I believe this is where the Buffalo group plans to officially present their data.

I have a hunch CCSVI will be a huge part of this one.

Maybe we should get a 'million ms sufferer 'limp, wheel, crawl' ' demonstration there! LOL

(for our non-US readers there was a 'million man march' of African-Americans in Washington a few years ago, obviously most of us don't 'march' to good...)
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Postby MSUK » Fri Dec 18, 2009 7:58 am

Algis wrote:January 23rd at Vicenza. More details as soon as available.


Thanks Algis :wink: Can someone post further details when available?

squiffs :P
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Postby Devis » Fri Dec 18, 2009 3:56 pm

Hi all,

the meeting is organised by the Smuovilavita Foundation (http://www.smuovilavita.it), which is strictly connected with Sclerosi.org, an Italian web site and forum about MS.

We will post all the details on both the web sites as soon as they are available. I'll try to keep you up to date too :wink:
<em>live long and prosper</em>
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Postby MSUK » Sun Dec 20, 2009 12:59 am

Thanks Devis
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Google Translation

Postby MarkW » Sun Dec 20, 2009 9:49 am

CCSVI and multiple sclerosis: Conference January 23, 2010

Communicate to preview the Foundation Smuovilavita NPO is organizing a conference on chronic venous insufficiency in which cerebrospinal will intervene 'Prof. Paolo Zamboni.

The conference will take place 'in Vicenza in the day of 23 January 2010.

Anyone going to Venice ?

MarkW
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Postby jr5646 » Sun Dec 20, 2009 6:45 pm

jay123 wrote:Maybe we should get a 'million ms sufferer 'limp, wheel, crawl' ' demonstration there! LOL


Hey Jay, not a bad idea... Seriously!!! I remember a few years back when Biogen/Elan pulled Tysabri from the market (the FDA originally fast tracked TY) then, when they re-introduced (FDA Advisory Committee) - patients came out in full force pushing for better treatment options... I think they had to extend the hearing to two days to accomodate all the PT's. Extremely compelling and quite sad if I recall correctly.. They DID listen.. 12-0 in favor, to a potentially fatal treatment...

Completely different circumstances, but I think if we (patients and caregivers) come out in full force, we WILL be heard.

Million man gimp.. What a sight that would be.. LOL

What irk's me though, is that we shouldn't have to work this hard and endure further stress just to get some relief... Whatever happened to "compassionate" basis treatment????
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Postby reg613 » Sun Dec 20, 2009 8:40 pm

jay123 wrote:And this will be a very interesting one, American Academy of Neurologists 2010 Annual Meeting which takes place in Toronto, Ontario, April 10–17. I believe this is where the Buffalo group plans to officially present their data.

I have a hunch CCSVI will be a huge part of this one.

Maybe we should get a 'million ms sufferer 'limp, wheel, crawl' ' demonstration there! LOL

(for our non-US readers there was a 'million man march' of African-Americans in Washington a few years ago, obviously most of us don't 'march' to good...)


Oh no, not Toronto... ? That's where my son went to get a dose of decadron for his tumefactive MS relapse, was stuffed into a corner of the neuro ward and left to deteriorate, suffer and die. No one informed us he was there even though my son gave my name as contact person. In a court case after the fact, the defense was that "a hospital will call a roommate or spouse of an adult but not his family." They only called us three days later and asked if we were interested in donating his organs.

The folks at the Toronto Western Hospital figured he would be an easy catch for organs. He presented with aphasia so couldn't protest too well.

Just left in the corner he got to the point of having ICP nine times the normal limit but as a targeted "possible organ donor" they didn't give him painkillers in case suspicions were aroused. They had to wait till his pupils blew and he stroked and herniated.

Then they put him on life support and painkillers. So he went through bilateral stroking, and three of five stages of herniation with full feeling and immobilized with haldol, the substance they use for people who need to be subdued upon admission. They did this to stop him writhing in pain and in case someone asked why he was in pain. Pain is a useful sign in neurology, you see, that pressure has to be released. But not for my son. He was organ fodder without his permission and even though when they made the decision to relegate him to possible organ donor he was fully competent and able to be consulted. Organs have to prepared long inadvance of asking a family for consent. It's a guess on the part of the doctors. They do it based on race and religion. We are white and deemed the usual "christian" type.

Their excuse in the court case was that they didn't know he had ICP even though from the time he got there he told them his headache was bad. He was beginning to get edema and midline shift but still no decadron at all and no painkillers for him. ONLY TESTS to check out his organs for transplant. He'd had nothing like this for his first lesion four years previously, and one which was worse than this last one. Things move fast down the slippery slope.

Eventually they nabbed him by inducing a seizure and letting it go on for 70 minutes. Nice eh? We had to pull the plug finally. My poor son who went in for a routine steroid was good and fried.

The utterly wonderful thing was that they didn't get the organs they thought we would just say yes to!!! Being a member of the "complacent" demographic he had been eyeballed as someone whose family would love "to make good come from bad" and "give the gift of life."

Yes we might have looked like members of that complacent demographic but we weren't. We are a cynical bunch. We were exceptions to the norm. We have always frowned on organ donation and the deceit that goes with it. We said NO and remained at his side until he was well cold.

The only reason this case is being aired is because it went wrong. Other people donate and they have to tell themselves it was a great thing otherwise they will indeed suffer terrible realizations.

So my son went his way with his self, soul, spirit etc intact. I gain great comfort from that fact. It's very important for people to keep their organs. One needs one's organs to die and one is not dead when organs are removed. Only comatose.

If you suffer from tumefactive MS you are in a dangerous position. You will be treated for your first one but if you get another, it is very easy for doctors to get you to deteriorate. The lesion is big, and ideal in making an organ donor out of you if steroids are not duly given.

Oh and be very careful of Toronto. It reeks with all sorts of schemes and plots. I'm not surprised this meeting is taking place there.
Last edited by reg613 on Sun Dec 20, 2009 10:05 pm, edited 2 times in total.
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Postby reg613 » Sun Dec 20, 2009 9:23 pm

Seizure was induced by a one time shot of morphine. At the point where my son was crying out in pain, a neurologist came to see him for the first time and gave him this morphine. (He had been seen by a kidney resident before who had prescribed tests for his transplantable organs but no treatment for his MS).

Morphine is strictly contraindicated in the setting of a single, larger than 2 cm demylinating lesion.

His seizure took place an hour or so later. Morphine is a powerful respiration depressor. Depressed respiration to the brain increases carbon dioxide and ICP as well as chance of seizure. The morphine was disconitnued after it had caused the seizure. In plots like this, it is discontinued mainly because it affects the quality of organ perfusion before transplant. Also a doctor would have to explain why he is using this drug rather than treat the rising ICP. Of course the doctor needs the ICP to harm the patient and get him to the point of "bad news" for the family who will be dramatically coached to donate organs.

Everything is about spare part organs today. To heck with the victim.
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Postby Johnson » Sun Dec 20, 2009 9:50 pm

Holy Moly, now I understand your cynicism, reg613. I did not before. I am very sorry for your loss.
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Postby Johnson » Sun Dec 20, 2009 9:52 pm

It feels empty now, but I did quite like this, before I was sobered by reg613's post.

Million man gimp.. What a sight that would be.
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Postby jr5646 » Sun Dec 20, 2009 11:34 pm

reg613 wrote: That's where my son went to get a dose of decadron for his tumefactive MS relapse, was stuffed into a corner of the neuro ward and left to deteriorate, suffer and die.......


I'm sorry for your loss reg613 - Below is a link to Daily Strength regarding the exact same story by "Carefulnow"... Maybe a friend of your son?

http://www.dailystrength.org/people/347427/journal/1736644


I'm not quite sure what your ramblings have to do with CCSVI??? but I hope you find some relief from your pain and sorrow...
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Postby Algis » Mon Dec 21, 2009 12:18 am

I am also sorry for you loss - Accept all my sympathy.

But I fully agrees with jr5646 for the other part.

Be well and in peace :)

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