FlashHack is Liberated

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

Postby Vivianne766 » Wed Jul 14, 2010 5:43 pm

Great news Flash.
Health and liberation to us all.
:D
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Postby tazbo » Wed Jul 14, 2010 5:52 pm

Fantastic Flash! I am very happy for you and I thank-you for all you have done to keep us hopefuls in the loop.
Keep healing...
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Postby msgator » Wed Jul 14, 2010 6:06 pm

thanks for the great info. Wishing you much healing and please continue to keep us updated.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby Trine » Wed Jul 14, 2010 6:08 pm

Thanks for the great report. Happy healing!
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Postby Trish317 » Wed Jul 14, 2010 6:19 pm

Thank you for your wonderful, detailed report, and for answering everyone's questions.

Sending prayers and good thoughts for continued healing and complete health. Take good care of yourself, Flash.
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Postby newlywed4ever » Wed Jul 14, 2010 7:24 pm

I am elated for you!!! :D
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Postby gabbycats » Wed Jul 14, 2010 7:26 pm

Your foolish lies and comments are more than self serving, they put this whole project at risk and you know nothing about it.
Last edited by gabbycats on Thu Jul 15, 2010 4:51 am, edited 1 time in total.
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Postby JoyIsMyStrength » Wed Jul 14, 2010 7:31 pm

FlashHack,

That is outstanding and I'm in love with your Sponsor. :-)

Blessings to you and congratulations,
Pam
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Postby Lifegirl » Wed Jul 14, 2010 7:46 pm

It's not okay to mess up other people's chances of getting treated. It's great you had results and we have been very clear about not using names and places.
<strong><u>Tina Veach<br /></u></strong>
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Postby Rokkit » Wed Jul 14, 2010 7:50 pm

Lifegirl wrote:It's not okay to mess up other people's chances of getting treated. It's great you had results and we have been very clear about not using names and places.

Whoa, Lifegirl, getting treated by Dr. Siskin is not a secret. He has a website.
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Hi

Postby mybribri » Wed Jul 14, 2010 8:00 pm

So happy for you, One thing though this Dr does not want his name all over the web any where on it. Also a note back from your Dr after you put up this post on here. Please read below and remove your post as soon as possible before you compromise many other MS patients and there treatment.

I don't really think that there is a lot you can do about it. Feel free to contact him privately if you would like. ( I would have been more than happy to do this privately but I do not know your full name or email address) Also not sure if you are on Facebook without your name. There isn't a whole lot that really bothered me except for the following...

1) He has no insight into the work that we have done with the IRB because I never discussed it with him. It's interesting to me that he felt that we have no academic interest when we are creating a definitive protocol from our institution that will likely become a multicenter study. Honestly though, it doesn't really get me mad but it's a little annoying because I know that we will be presenting our work. In my opinion, and in the opinion of others, one cannot really do research on something without having experience in the area you are researching. To set up an IRB protocol and start doing something leads to inaccurate results due to inexperience. We are in a ramp up phase for this now, which we feel is important.

2) If we waited until we got IRB approval to do anything, people like this patient would have been screaming in frustration at the lack of centers available to do this procedure. Therefore, we can't win. If we wait, then we are "afraid" of treating MS patients. If we don't wait, then it means we don't care about academia.

3) I am annoyed about highlighting the hospital. That will only lead to problems and I hope it doesn't compromise my IRB approval.

4) I do not think I ever would have said 90-100 patients because we are incapable of treating that many patients in a month. I will tell you that during July we are treating 54 patients and in August we are treating 57 patients...and that is between 3 physicians. We are doing what we can.

I don't really think that he said anything that was not terrible outside of the inaccuracies I point out above. I just hope he doesn't ruin things at the hospital for some of our patients.

Gary


Please remove your post as soon as possible, leaving the hospital and Dr name out of it!! DON'T RUIN OUR CHANCES FOR THIS PROCEDURE!!! PLEASE!!!
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Postby newlywed4ever » Wed Jul 14, 2010 8:05 pm

So why are folks "advertising" this on their FB page? If someone has a link to this on their wall, essentially they're directing more people to check it out!?!
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Postby gabbycats » Wed Jul 14, 2010 8:09 pm

Rokkit wrote:
Lifegirl wrote:It's not okay to mess up other people's chances of getting treated. It's great you had results and we have been very clear about not using names and places.

Whoa, Lifegirl, getting treated by Dr. Siskin is not a secret. He has a website.


No kidding, but the untruths are unacceptable!
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Postby wensubar » Wed Jul 14, 2010 8:18 pm

We all want to hear your story but you haven't read rules to posting in this website. I KNOW this doc did not give permission for you to post a name! You have not only put others chances of health in danger, but you have also put a doctors reputation in perrill. would you please remove this post so as to not cause anymore trouble. PLEASE!!!!!!!!!!!!!!
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Postby anndii » Wed Jul 14, 2010 8:20 pm

Hi FlashHack, While I am extremely happy for you I am begging you to please please please edit out the hopsital specifics from your blog. I know you are coming from a good place in putting it there but every time Dr and location specifics have been posted that facility ends up getting shut down almost imediately afterwards. I know because I was shut out of Philly after someone posted specifics on FB. I have an appointment coming up soon here and now I'm frankly terrified it might happen to me again. You can post specifics privately to people who inquire but again I beg you to please take it out of your blog. It may end up hurting more people rather than helping. Thanks and I'm gald to hear you had such great results so far. Anndii
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