update on the meeting in Toronto M.S. society ??

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update on the meeting in Toronto M.S. society ??

Postby tiredloulou » Fri Jun 17, 2011 4:30 pm

looking forward on hearing how this all went.........

hoping for open minds , know Rubin was not into it
I had my doctor call his office for my follow up appointment
after my procedure

told Not necessary, unless i was having medical problems
and then, he would not refuse ...........da da................legal issues
was my guess for this last statement
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Postby Foxie » Fri Jun 17, 2011 5:28 pm

The only update is that Sandy McDonald phoned Arlene Hubbard to inform her that Sclafani didn't go to the meeting. So Hubbard was on his own. Anybody know sy Dr. Sclafani didn't go? The meeting will be over now.
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Postby Cece » Fri Jun 17, 2011 6:52 pm

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Postby 1eye » Sat Jun 18, 2011 4:52 am

I thought you meant the national AGM. That's today.
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Postby annad » Sat Jun 18, 2011 12:26 pm

Yes, the AGM is today and I'm anxiously waiting to hear from those I know who attended.

I went to the hotel where the panel discussion on CCSVI was being held yesterday. As you know, Dr. Sclafani couldn't get out of NY due to weather. After the meeting, I and a few others had the pleasure of meeting Dr. Hubbard and Avis Favaro and Dr. Ashton Embry.

We didn't get into too much detail of the meeting other than Dr. Hubbard saying it went the way he expected and that they were respectful.

This is the feedback that Arlene (Dr. Hubbard's wife) shared with us on facebook:


"David called and thought the meeting went fine. Everyone was nice, interested and knowlegeable. He exchanged business cards with many. He felt that the audience was receptive and he wasn't attacked. There were approx 20 wonderful FB buddies... that were there after the meeting which made him feel great.
David was asked by the Saskatchewan representative if he wanted to help and David said he's always happy to help...we'll see what comes of that. David did not, unfortunately, get the feeling that things are going to move quickly. He believes any changes in Canada's decision to allow testing/treatment for CCSVI will take a while. But perhaps they will now be amenable to open dialogue with people who believe in the value of CCSVI treatment."
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Postby MrSuccess » Sat Jun 18, 2011 2:12 pm

I would suggest that any pleasantness portrayed by the MSSociety ......
was made ..... with the thought of the reaction they would face ..... by the many CCSVI TIMS members.

That .... and Dr. Hubbard is a respectable gentleman .

The polar opposite of Dr. Mark Freedman.




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Postby 1eye » Sat Jun 18, 2011 2:12 pm

How did the proxy voters do?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby ikulo » Sat Jun 18, 2011 4:48 pm

this was also posted by arlene on facebook

David just got home! The vascular surgeon, Dr Rubin, on last night's panel of the MSSC announced an adverse event that we had known about but we didn't feel it was proper for us to communicate. A well -known IR in Newport Beach performed an intracerebral sinus procedure sometime in March and the patient died of a subdural hematoma. Apparently there's a local news story about it. We are thinking of the family and the doctors.
Dr Rubin is against CCSVI because of the risks and he said that's why he shared this information at the meeting.


Can anyone confirm this death? I would assume that this procedure was CCSVI related, but also not sure.
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Postby Cece » Sat Jun 18, 2011 6:02 pm

I never knew all the details, but this death was confirmed by the administrator of the Facebook Newport Beach CCSVI page back in late March.
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Postby MrSuccess » Sat Jun 18, 2011 8:38 pm

News we all read with great sadness.

Mr. Success is always taken aback when reading the unfortunate and unexplained premature deaths of people having the most simple medical procedures possible ......... like having a tooth fixed ..... .

Nothing comes without risk.

It is my understanding that each year , numerous young and old , male or females ...... die .... and the cause is unknown

The autopsy's reveal ......... nothing.

I think Dr. Rubin has used the grief of another family ..... to further his own agenda . There is a greater risk of death .... driving to or from the medical facility.

How low can you go..... :evil:


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Postby carollevin » Sat Jun 18, 2011 8:47 pm

Yes, As CeCe wrote, I can also confirm their was a death shortly after CCSVI at PI/Synergy. It was posted on the Newport Beach CCSVI group by the administrator. The information was stated that the patient was from Canada and did not die in the hotel. It seemed to imply the death occurred within a few days after the procedure. It was stated that out of respect to the patient's privacy, no further details were being disclosed at the time.

This event seemed to fall under the radar. My personal opinion is that most/many surgeries do have a 1%, more or less, death risk. I believe this is the second death from CCSVI--of approximately over 15,000 done, so the death rate is very low.

Still it would be helpful to the CCSVI community to know some details of this case so precautions could be taken to know if this could have been prevented. I can't imagine how awful this must be for the family.
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Re: CCSVI related death

Postby NHE » Sat Jun 18, 2011 11:12 pm

ikulo wrote:this was also posted by arlene on facebook

David just got home! The vascular surgeon, Dr Rubin, on last night's panel of the MSSC announced an adverse event that we had known about but we didn't feel it was proper for us to communicate. A well -known IR in Newport Beach performed an intracerebral sinus procedure sometime in March and the patient died of a subdural hematoma. Apparently there's a local news story about it. We are thinking of the family and the doctors.
Dr Rubin is against CCSVI because of the risks and he said that's why he shared this information at the meeting.


Can anyone confirm this death? I would assume that this procedure was CCSVI related, but also not sure.


Angioplasty (or stenting or whatever it was) of an intracerebral sinus is not a typical treatment for CCSVI. Without knowing all of the details, it sounds like this IR might have found an unusual situation and may have tried something new in an attempt to help.


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Postby scorpion » Sun Jun 19, 2011 8:40 am

MrSuccess wrote:News we all read with great sadness.

Mr. Success is always taken aback when reading the unfortunate and unexplained premature deaths of people having the most simple medical procedures possible ......... like having a tooth fixed ..... .

Nothing comes without risk.

It is my understanding that each year , numerous young and old , male or females ...... die .... and the cause is unknown

The autopsy's reveal ......... nothing.

I think Dr. Rubin has used the grief of another family ..... to further his own agenda . There is a greater risk of death .... driving to or from the medical facility.

How low can you go..... :evil:


Mr. Success


Scorpion will always believe Mr. Success will use any type of negative news about CCSVI as an opportunity to talk trash about someone.
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Postby Cece » Sun Jun 19, 2011 9:16 am

This is a really serious topic (a death from an intracerebral sinus procedure in an MS patient)...could we refrain from rising to other's provocation, on either side?

It would be helpful to know if this involved stenting or ballooning in the sinuses.

Belated condolences to the family.
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Postby ikulo » Sun Jun 19, 2011 11:03 am

@carollevin - There is tremendous debate about all the numbers you noted. But even for the sake of argument, let's say there were 15,000 treatments and just one death. That's 1 death out of 15,000.

This report places the death risk of Tysabri almost exactly the same as CCSVI - (5 deaths out of 63,000 = 1/12,600). <shortened url>

My point isn't to stir the nest here, I just want to point out to those considering this treatment as very safe - we are learning more and more about this each day, so please if you're considering having this done, be careful!
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