CHRISTINE'S EXPERIENCE

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

CHRISTINE'S EXPERIENCE

Postby dania » Wed Jun 27, 2012 1:41 pm

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Re: CHRISTINE'S EXPERIENCE

Postby Cece » Wed Jun 27, 2012 3:14 pm

This is a video from a woman on day 2 after jugular surgery, not to be confused with minimally invasive venoplasty, but full cut-open-your-leg-and-neck surgery to transfer a leg vein to the neck to serve as a jugular.

I am strongly opposed to the promotional activities of Excel hospital. They have a paid patient advocate named Tina who posts in social media sites. They make shiny happy videos. This is different than the self-initiated youtube videos to show off before-and-after improvements ("I can jump!!"); these are videos put together by the hospital as advertising.

Here is Mike's blog, who had a vein graft and, five months later, had the vein totally clot close. His most recent update is a good one: he's grown a collateral and has not had an MS relapse since before all his procedures. Credit is given to his very large right jugular, which I believe was treated successfully by venoplasty. The graft was a failure, but he is doing well, and that is good news. http://msmikejuices.blogspot.com/

Would love to see blogs by people who have had successful vein grafts and are as many months out as Mike. But there aren't any.
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Re: CHRISTINE'S EXPERIENCE

Postby dania » Wed Jun 27, 2012 3:39 pm

Cece you will have to wait. There is 1 patient that was done 5 or 6 months ago and she is doing fantastic. I doubt she will come forward for fear of being attacked. All the other patients have had their surgery in the last 4 months or less. People are very hesitant to become public. They have seen others attacked and do not want to have it happen to them. These, as you say shiny videos... do you forget how you felt after you angio? When the blood was flowing? I do. Ecstatic. Wanted to tell the whole world. You do not have to live a crummy existence.There is hope. Who cares who spreads the word. As long as it is spread. Dr Sclafani gets paid for what he does and he has a whole thread here.
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Re: CHRISTINE'S EXPERIENCE

Postby orion98665 » Wed Jun 27, 2012 6:00 pm

Ditto Cece this is nothing more than a promo clip, medical tourism at its best!! Not saying vein bypass couldn't explored
but i think this is the wrong direction.
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Re: CHRISTINE'S EXPERIENCE

Postby 1eye » Wed Jun 27, 2012 6:25 pm

I think it was very brave of Christine and maybe this is not a good place, because she might see criticism of the hospital as criticism of her. It is not criticism of her, coming from me. Possibly we should refrain from criticizing the Mexican operation, because it is as dania says, other doctors are free to do the same. I do hope all goes well with her.

I think it premature of the hospital, not her, to release the video. It is carefully edited, but I'm not complaining about the content.

Remembering how I felt, and knowing how I feel now, all I can do is hope it lasts for her. A lot of us are old for healing, easy to injure, and prone to complications. I think if governments and medical associations could just get their collective finger out, we might have the advantage of some cooperation.

We don't. Maybe next life.

I know we are all well-meaning, but because we have to live in the real world, and the forces of Mordor are arrayed against us, so to say, I am very unsure what to do next. I have been enjoying all the discussions, anyway. Meanwhile I'm trying to get this procedure available in Canada, because I think it can save lives.
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Re: CHRISTINE'S EXPERIENCE

Postby dania » Wed Jun 27, 2012 6:41 pm

At least Dr H is publishing a paper on his finding. That is more transparency then all the IR's doing angio. Now, is that going to be called a promo clip, medical tourism? Anything new gets attacked. Zamboni was.
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Re: CHRISTINE'S EXPERIENCE

Postby tiltawhirl » Wed Jun 27, 2012 6:42 pm

dania wrote:Cece you will have to wait. There is 1 patient that was done 5 or 6 months ago and she is doing fantastic. I doubt she will come forward for fear of being attacked. All the other patients have had their surgery in the last 4 months or less. People are very hesitant to become public. They have seen others attacked and do not want to have it happen to them. These, as you say shiny videos... do you forget how you felt after you angio? When the blood was flowing? I do. Ecstatic. Wanted to tell the whole world. You do not have to live a crummy existence.There is hope. Who cares who spreads the word. As long as it is spread. Dr Sclafani gets paid for what he does and he has a whole thread here.


I think we all agree that however the word is spread, that getting information out there is a good thing. That isn't the same as nefarious infiltration of various message boards and other online gathering places under the guise of being a regular patient sharing their personal experience with a physician. Every time I respond to an email of inquiry about which Dr and why I saw them, I am very specfic to state that #1 The procedure does not work for everybody, and #2 That I have absolutely zero financial affilliation with my physician or the company he works for. It's just the right thing to do.

There are a couple of places that have been engaged in the more nefarious brand of advertisement as stated above, and I think it's very important to call these people out for their behaviour.

Dr Sclafani having a thread here and sharing his learning experience is apples and oranges different than what I stated above.

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Re: CHRISTINE'S EXPERIENCE

Postby dania » Wed Jun 27, 2012 7:03 pm

I wonder how many people went to Dr Sclafani after seeing his thread here?
And I do think it is wonderful he takes time out of his busy schedule to answer questions.
I have absolutely zero financial affilliation with my physician or the company he works for.
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Re: CHRISTINE'S EXPERIENCE

Postby Icechick » Wed Jun 27, 2012 7:19 pm

This is Christine again. Let me assure you the video was only "carefully edited" because while I was talking my husband called on my cell phone, so I had to stand up to walk over to answer it. In doing so, I hit the microphone button and they had to have me sit down and redo some of my information. They did not "carefully edit" anything. As I said in my video, this was not an easy journey and I don't pretend it was - they could have edited that, but they didn't. I JUST WANT PEOPLE TO KNOW THERE IS STILL MORE RESEARCH GOING ON OUT THERE!!! i was willing to take that step. Not everyone is. I find it fascinating that people want to attack Tina!!! She is a wonderful caring person and as I said, her passion is being sadly mistaken for promotion. I assure you she just wants to spread the word because she wants to see people get better. Moreover, Dr. Hernandez is the most brilliant doctor I have ever met. If you are interested in learning more (NOT HARRASSING SOMEONE) contact Tina.
I find it fascinating that people are now so tied to angioplasty and don't want to open their minds to another treatment for CCSVI. Everyone should ask themselves why it is that Excel is being attacked by the medical community as well. Could it be that certain EGOS are getting out of control? Why are the IRs and others so afraid to reach out to Dr. Hernandez to learn more about this before commenting?
I thank everyone for their positive comments. I did this so I could know if it works. I assure you I will share if it does AND if it doesn't. Either way, we will have learned SOMETHING and isn't that what we want??????
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Re: CHRISTINE'S EXPERIENCE

Postby CureIous » Wed Jun 27, 2012 8:00 pm

Great discussion, thanks for the "behind the scenes" input.
It is a sad sad fact that the politicizing (read:polarization) that started at the beginning, when stents were the big boogeyman, has now been enjoined by vein grafts, and style is chosen (sometimes) over substance, personalities over personal testimonials, institutions over individuals.

At this point its about steerage and ownership, (of the future of CCSVI), because CCSVI isn't going anywhere, and doesn't need (though it may help), "star power". Without the science being published and documented, it's just another "cure cult" to the outside world, and bravo to the JAMA and neuros for temporarily creating the image of nonsensical patients desperately grasping at straws.

But we're not stupid, perhaps some a bit impulsive, but we all wear big people pants and I trust the vast majority are intelligent enough to sift through slick advertising (which really is necessary to not appear amateurish, hello Madison Ave.), and can apply proper thought towards something as invasive and pervasive as vein grafting, I'll hazard a thought that much reflection (along with risk) was to be had along the journey. Been there, done that, and as far as I'm concerned, anyone willing to go to such lengths to attempt any kind of reduction or mitigation of this disease, should be given a medal as the first down the rabbit hole. They are putting their lives, brains and future disease states on the line, live, die, for better or for worse they are benefitting the Jacks of the world.

How anyone could possibly criticize that is beyond me. We are shooting our wounded, eating our young, and it disgusts me to no end. Yeah, unscrupulous operators are and have popped up to grab ahold of the gravy train, that's automatic in any industry, yeah, some are just going to toss caution overboard and pay a heavy price, that can only be mitigated so much, the internet is vast beyond our ability to control the information flow, it's a lost battle before it starts. We can only try to steer towards proper information, testimonials, videos etc, they all play a role whether they've been officially vetted by some authority (sic) or another.

I am in awe at you vein grafters, I mean really, wow, you put your body where your mouth was, and that took some kind of courage.
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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Re: CHRISTINE'S EXPERIENCE

Postby 1eye » Wed Jun 27, 2012 8:17 pm

Dear Icechick:

It is carefully edited, but I'm not complaining about the content.
I'm not attacking. I'm sure if I'd made a video I would have been as careful an editor as I could. You probably gave it directly to dania. I'm truly sorry, since I admit I only assumed they were flogging it everywhere, and that may not be true at all. Too soon to criticize. I think it is great that there's going to be a paper. I hope it lasts as long as you do.

I'm sure your assessments of everybody are spot on. What I'm really amazed about is the energy you seem to have. Good going. Don't over or underdo it. I'm sure you won't.

Actually, the last thing I want is to read bad news, because it seems to follow me around anyway. Stay with the good news, please!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: CHRISTINE'S EXPERIENCE

Postby blossom » Wed Jun 27, 2012 10:55 pm

THANKS DANIA AND CHRISTINE FOR SHARING YOUR EXPERIENCE AND WHERE YOU WENT AND THE DR. AND HOSP. WILLING AND ABLE AND "WELL QUALIFIED" TO HELP YOU. AND OTHERS.

IF NECESSARY "WHICH I PRAY IT NEVER IS" FOR ME THAT IF I WERE IN YOUR BOAT I WOULD FEEL I WAS IN VERY GOOD HANDS GOING TO "EXCEL" AND BEING TREATED BY DR. HERNANDEZ..

DANIA YOU HAVE SHARED ALL YOUR UPS AND DOWNS AND TO HINT OR ASK IF CHRISTINE OR YOU WERE PAID PATIENTS WAS RUDE, HURTFUL, AND UNCALLED FOR.

THERE ARE LOTS OF FOLKS HERE INCLUDING MYSELF THAT MAY NEED FURTHER HELP IN THE FUTURE AND APPRECIATE THE INFO. ONE NEVER KNOWS. A LOT OF US HAD OUR VEINS TAMPERED WITH. I SINCERELY HOPE YOU GUYS HEAL AND GET WELL. THANKS AGAIN.

P.S. I WAS NOT PAID TO SAY THAT!
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Re: CHRISTINE'S EXPERIENCE

Postby dania » Thu Jun 28, 2012 3:40 am

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Re: CHRISTINE'S EXPERIENCE

Postby doris » Thu Jun 28, 2012 7:04 am

I am the "Lead case medical manager" for the entire hospital for it's international patients since I stepped down from working in surgery as a Cardiac nurse and have been since 2009. I am NOT paid by commission for ANY of my work!! I am very happy to respond openly and honestly to valid questions, but I will not respond to rude questions.
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Re: CHRISTINE'S EXPERIENCE

Postby doris » Thu Jun 28, 2012 7:17 am

doris wrote:I am the "Lead case medical manager" for the entire hospital for it's international patients since I stepped down from working in surgery as a Cardiac nurse and have been since 2009. I am NOT paid by commission for ANY of my work!! I am very happy to respond openly and honestly to valid questions, but I will not respond to rude questions.



[size=150] I am talking about Excel Hospital here. Since Excel has been banned from this site I wish everyone with MS & CCSVI all the best to them in finding the correct answer for their healthcare needs.[/size]
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