Bad News --All Dake surgeries canceled even w/ appt.

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

Postby Johnnymac » Tue Dec 08, 2009 10:03 pm

Lyon wrote:
MS_mama wrote: I think that's why she used quotes. :wink:
I concede that I hadn't taken that into consideration, hadn't even noticed the quote really....but even now the purpose of putting an untruth in quotes is lost on me.

How should the quotes be interpreted to change the meaning of the wording??


How is an image that clearly shows damage to the grey matter of the brain specifically in areas where there are heavy iron deposits formed around the veins not proof?
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Postby Algis » Tue Dec 08, 2009 10:19 pm

The iron deposits in the brain surrounding areas where stenosis were found... That clearly proof the theory (without quotes) at least for me and for people who have a little logic.

Cheers :)
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Postby jay123 » Wed Dec 09, 2009 7:59 am

I'm sorry to disagree, but to me there is enough anecdotal proof that this does have a direct link to MS. Though the amount of people Dr. Zamboni tested isn't huge, he did test quite a few and it was only in the MS'rs. And the number of people that have improved following surgery is really amazing.
I can't wait to see the results of the Buffalo study. And on a side note, that shows why I am such a pessimist on the study timeline for Stanford. The results were supposed to be out early November.
And after reading the email from the MS dept at Stanford gloating over beating Dr. Dake, do you really think designing and approving a new study is going to happen?
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Postby Sharon » Wed Dec 09, 2009 8:42 am

do you really think designing and approving a new study is going to happen?


Simple answer, YES it is going to happen!

Sharon
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Postby jay123 » Wed Dec 09, 2009 9:15 am

jay123 wrote:And after reading the email from the MS dept at Stanford gloating over beating Dr. Dake, do you really think designing and approving a new study is going to happen?


Sorry, I think so too, I should have said "approving a study in a timely manner is going to happen?" -

Some excerpts from the unconfirmed email like
"Please know that no patient seen or cared for at the Stanford MS Center has ever been referred for this procedure. We have without exception advised those who have made inquiry to NOT have this procedure performed. There are no metrics any of us would considerable reliable that suggest therapeutic benefit; and there have been at least two serious adverse events as a consequence of CCVSI stenting. Effective immediately, this procedure has been SUSPENDED"

and the best

"We are in active communication with many interested organizations to let patients be aware that, contrary to the favorable reports they have been hearing , this is a procedure that cannot be defended, supported or recommended on risk-benefit considerations at this time"

makes me wonder what type of cooperation he will get in forming a trial. I'll bet they will want simply a diagnostic trial to back up the Buffalo trial.
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Postby CureIous » Wed Dec 09, 2009 9:38 am

Makes me wonder what "considerable reliable" means. I'm not one to jump all over typos which it obviously is, but the irony of that coming from the neurology dept is not lost on me... :) M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby marcstck » Wed Dec 09, 2009 1:11 pm

would love to comment but my motherboard fied, so stuck with wife's laptop, no voice recog software. Bumming.

Hope to be up and running in a few days...
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Postby Lyon » Wed Dec 09, 2009 1:44 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:32 pm, edited 1 time in total.
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Postby jay123 » Wed Dec 09, 2009 5:16 pm

Lyon why do you have to be such an a-hole? can't you just comment on peoples posts without acting like you are some frickin prima dona above everybody else?
The purpose of forums like this is to discuss thoughts and ideas, not attack others like you force people to do to you.
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Postby ozarkcanoer » Wed Dec 09, 2009 5:26 pm

jay123... the best thing is just ignore Lyon. He thrives on the attention.
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Postby muse » Wed Dec 09, 2009 5:27 pm

Hi Algis, I've sent you a pn to let you know where it's technically possible to get the surgery done in Taiwan.
Best muse
http://www.csvi-ms.net/en
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Getting oxygen to the brain

Postby Rebecca » Wed Dec 09, 2009 5:47 pm

I know this isn't a consolation to anyone counting on seeing Dr. Dake but I heard an M.D. say that cruciferous vegetables help thin blood and allow oxygen to more easily reach the brain. It might be worth our while to eat more cruciferous vegetables for a time, if possible.
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Postby jay123 » Wed Dec 09, 2009 5:52 pm

ozark - I know, sometimes you just get so frustrated ..... I feel sorry for his wife, the one who actually has ms.
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Postby Lyon » Wed Dec 09, 2009 6:41 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:31 pm, edited 1 time in total.
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Postby Johnnymac » Wed Dec 09, 2009 7:03 pm

Lyon wrote:
Johnnymac wrote:How is an image that clearly shows damage to the grey matter of the brain specifically in areas where there are heavy iron deposits formed around the veins not proof?
You might be right....please point out the image which meets the above mentioned specifications.


Here you go...you may or may not consider this proof but its enough for me at this point when combined with all the other evidence

http://www.ncbi.nlm.nih.gov/pmc/article ... figure/F2/

you can read the entire study here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2650739/
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