Report on the 7/26 Sclafani CCSVI Symposium

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

Postby kjwxau » Fri Jul 30, 2010 7:07 am

The UB study is NOT being done by IR's but by neurosurgeons. Are they the bridge between our MS Drs and IR's?
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Postby Cece » Sat Jul 31, 2010 2:43 pm

Kirsty Duncan, a Canadian politician, attended the Dr. Sclafani symposium as well:
Flying home from a conference on Multiple Sclerosis (MS) in New York this week, I couldn’t shake two memories.

The first was one patient’s words after receiving “liberation” treatment: “In general, I feel that I’m healing instead of just continuing to fail.” The second was a doctor’s plea: “I have eighty patients on an excel spreadsheet, they are desperate, and I want to help.”

Our party supports funding research for MS for all forms of treatment – including research into liberation treatment.

Liberation treatment is a cutting-edge therapy for MS patients thought to be suffering from chronic cerebrospinal venous insufficiency (CCSVI), a narrowing or blockage of veins in the neck which drain blood from the brain, that may trigger MS symptoms.

One researcher, Dr. Salvi of Italy told the other doctors in attendance — leading researchers from Bulgaria, Italy, Kuwait, and the United States — that you “don’t have to treat many to understand that something positive happens to these patients.”

It was an encouraging note amid a wider discussion on making rapidly-evolving science available, managing patient expectations, and the importance of developing a registry to capture pre-operative and post-operative data, and promote more published research.

more here:
http://www.liberal.ca/newsroom/blog/new ... sclerosis/
"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 vivavie » Sun Aug 01, 2010 11:33 am

Anybody knows if their was some Canadian doctors attending. No names, just want to know if there is hope that we will in the game on day or if we will be far far behind.....
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Postby L » Sun Aug 01, 2010 12:33 pm

vivavie wrote:Anybody knows if their was some Canadian doctors attending. No names, just want to know if there is hope that we will in the game on day or if we will be far far behind.....


I think that you're winning right now, what with Saskatchewan funding trials!
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Postby vivavie » Sun Aug 01, 2010 1:56 pm

Yes and no L, isn't there clinics opening or in the process in England??

I was hoping for doctors interested to start treating! or at least able to do the follow up!!!

I had a cold shower when I went for a Doppler in Montreal recently, they said they are not finding the same percentage as Zamboni. The tech said they have a better method!?!??

That's why I was hoping for canadian and/or Quebec attendee!
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Postby NormB » Mon Aug 02, 2010 4:46 pm

It is great news for Saskatchewan MS'ers but I wonder if they have many IRs that got proper training much the same as Dr McDonald and his staff have received by going to Ferarra.
If they did perhaps we should go and rent a lake view cottage there for a year, long enough to apply for a Sask health card.

Take Care All

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby 1eye » Mon Aug 02, 2010 5:36 pm

vivavie wrote:Yes and no L, isn't there clinics opening or in the process in England??

I was hoping for doctors interested to start treating! or at least able to do the follow up!!!

I had a cold shower when I went for a Doppler in Montreal recently, they said they are not finding the same percentage as Zamboni. The tech said they have a better method!?!??

That's why I was hoping for canadian and/or Quebec attendee!


I posted about this earlier today.

Their "better method" was not allowed in the Zamboni method. It involves using the Valsalva maneuver extensively. It's like it was designed to fail. The maneuver inflates the stenoses but that is very temporary and not typical of the operation of your veins, unless you hold your nose all the time. I have seen pressure measurements done by measuring just at a specific point in recovery from Valsalva, but I wouldn't think it would help at all -- in fact it seems counter-productive, to use it in CCSVI testing. It hides stenoses.
"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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