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


Postby 1eye » Thu Jun 28, 2012 8:12 am

doris wrote:
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.

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.

I didn't know they were banned, and I missed it if they were spamming anybody.

Facebook is going to ban me any time now for my petition posts. :oops: :wink: :mrgreen:

I think it's good we hear from medical professional who independently want to answer questions. Maybe the videos of testimonials need their own sticky. I don't think we have enough traffic yet on bypass to need a sub-forum or whatever it's called. Most of the people I've seen considering it, or who've done it, are up to their necks in angioplasties :sad: , and bypass is a last ditch thing. They are still trying to treat CCSVI. Maybe their will even be another book about treatments! Including stents, bypass, (shudder tongue in cheek) chiro, atlas, jaw wiring, drugs, whatever; all treating CCSVI! 8)

Seems to me a lot of people think angioplasty is the only solution to CCSVI, but there are those (I even know a couple of them quite well - you know who you are :wink: :wink: ) who have been told by IRs and vascular surgeons they can have no more angioplasties. So I think it's legitimate to discuss other options, especially for those people.

Does Excel offer angioplasty as well as a bypass? You have to admit it's a bit less invasive, risky, etc. right? Why don't you (doris) start a doris thread and if people keep posting to it, it'll be visible on the forum's front page even if it isn't sticky. Dr. Sclafani's thread has been there three years, maybe more, without being sticky. He's too busy answering questions and doing procedures, to be spamming, or advertising. The poor guy thought he was going to retire! :-D

Anyway I've asked you one question, and it wasn't in a PM. OK? :smile:
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Postby dania » Thu Jun 28, 2012 8:28 am

Yes they offer angioplasty. That is how vein bypass surgery came about. One patient had a few angio at Excel and when she restenosed and they could not do another, Dr H got involved and came up with the vein patch operation which led to the vein bypass.
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Postby doris » Thu Jun 28, 2012 8:48 am

YES, Excel has been doing veno-plasty since 2010. Myself, I had it at Excel hospital and still doing great since 12/08/10 I will never forget it.

Dania jumped in here and I want to this to be clear!! A patient by the name of Deirdre came for a 3rd veno-plasty, the Cardiologist/Interventionist was unable to open one side and that is when a CARDIOTHORACIC & VASCULAR SURGEON AMERICAN BOARD CERTIFIED was called in by the name of DR. JOSE G. HERNANDEZ for a consult to see if he could help Deirdre.

HE BELIEVED HE COULD AND DID!! Deirdre is now post 6 months and doing great! Deirdre then returned a short time later to have Dr. Hernandez do open surgical intervention of her internal jugular on the other side which today is also open. Deirdre was unable to function before the surgery and yesterday walked into her Neurologist appt. with heels on. So for those who are NAYSAYERS please keep an open mind.

This may NOT be the solution for some but is an answer to many! There is definitely more research needed and that's why Dr. Hernandez will be publishing his findings. I encourage people to share and talk and not get banned or muzzled from due to politics of medicine.
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Postby DougL » Thu Jun 28, 2012 9:12 am

doris wrote: I encourage people to share and talk and not get banned or muzzled from due to politics of medicine.

we here at TIMS are very protective of our little home. what i saw was a person who joined TIMS and began to promote a "product".

nothing wrong with promoting a product that you believe in. however, the question was raised if the person promoting the product was paid to do the promoting.

being paid to promote is what we have a problem with.

many pwMS are desperate for any kind of cure. and some have cogfog issues which could make them vulnerable to internet predators. we are looking out for our members.
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Postby cheerleader » Thu Jun 28, 2012 10:11 am

I am happy for Christine, and wish her well. She is a friend. I have nothing but respect for her.

I'd just like to clear up one thing. When we started discussing CCSVI back in 2008 on TIMS, we were referring to peer-reviewed and published research by Dr. Zamboni. I wanted Jeff tested and treated locally, at a university hospital and Stanford was interested. Dr. Dake met with Dr. Zamboni in early 2009 at a vascular conference in London, and the first people treated later that year (all from TIMS) shared their experiences on here. The doctors didn't post, the hospitals didn't post, nurses didn't post--we were patients and caregivers sharing research and experiences. The first 40 treated at Stanford were pioneers. To say that the situation has changed would be an understatement. I'm not so sure how I feel about the change...but it's a reality. There's a lot more info out there now. From You Tube testimonials, to paid ads, to hundreds of published papers.

This Is MS is supposed to be an "unbiased forum" for patients and caretakers. But when you make any financial gain off of a treatment you discuss on this forum, there is a gray zone that has been entered. I'm not sure how this can be dealt with, since the line has already been crossed....I say this with respect.
I wish all new folks well. I wish them discernment and good health.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby newday » Thu Jun 28, 2012 2:34 pm

I found the ccsvi thread at the bottom of the page April 2009. Thank you Joan. Pursuing treatment changed my life. I agree the forum has changed. I was thrilled to see Christine's experience. I have been contemplating the right time to address my ccsvi symptoms slow return. My procedure was November 2010 and I'm still much better than before. Pwms please don't chase our brave and generous pioneers away.
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