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Old 09-24-2010, 07:23 AM #11
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Originally Posted by dmplaura View Post
My doctor was flat out honest about CCSVI and the procedure. Her friend who's more progressed (EDSS) with her MS had the CCSVI procedure done, was doing better, and then a few months later crashed and burned, and was worse than before.
This is exactly what I was talking about. I want to see what happens to folks MONTHS after doing this. if not years. Adrenaline is a powerful drug and can cause a mother to lift a car off a trapped toddler. I am sure it can raise an MS patient out of their chair, esp with the hope factor.

I hate to sound like a negative nelly, but I rarely see the videos of these folks even two weeks later. We see them before, and then on their way to, and then just after the proceedure. They describe it in great detail, but 2 days out...we lose them. Are they afraid speaking the truth will discrourage those who go behind them? I would rather know the whole truth, instead of folks going to the opposite extreme in trying to protect me.
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Old 09-24-2010, 09:34 AM #12
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I asked my Neuro about CCSVI when I had my appointment last month. He wasn't impressed with it at all and discouraged me from even getting my hopes up. But.....he's sort of negative about everything except the DMD's that have been around forever (and don't work that well ). He did listen to my heart and put the stethoscope up to each side of my neck but said everything sounded OK. He's the same abut LDN, too. Thinks nothing works but the things that cause a zillion side effects. I'm beginning to think that these doctors have an agreement with big pharma to keep everyone gainfully employed!
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Old 09-24-2010, 12:01 PM #13
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Exactly, Dej, that's my question too. A few months after the procedure, the CCSIV patients all seem to vanish???
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Old 09-24-2010, 03:21 PM #14
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Maybe we should all put a video on YouTube asking what the long term prognosis is with the people who have had it done.

If I had it done.....and it worked.....you better believe I'd be posting 1, 2, 3, 4, etc. month follow up videos to prove it to the doubters. Makes me wonder why nobody has bothered to put up a post-op video....and not just one the following day.
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Old 09-24-2010, 05:46 PM #15
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I mentioned ccsvi to my new neuro #4 or 5 now and his reply was along the lines of farse. I said nooo..(as my high opinion of him was about to fall) "what about all the utube videos? they're not faking". He said if it makies me happy to keep looking into it.

I mentioned it to a world known surgeon while I was in NY over summer and he said if I need it - don't hesitate. Simple procedure said he. His walls are covered with awards and magazines with him on them though so simple to him may not be to others.

What do you's think about the dissolvable stents coming out in 3 yrs?
I don't see how people could relapse unless the vein was just stretched for quick fix and reshrunk. Think about it.
I'd certainly roll the dice with metal stent tomorrow if I knew I'd stop progressing but that's me.
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Old 09-24-2010, 07:42 PM #16
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http://www.msdlatinamerica.com/ebook...#F49_40-RE1-A1

Above shows many doppler images & more. Looking at my doppler again, I think I need to have it viewed by another doctor. Tech's aren't allowed to say much during procedure (shame) and it was my 1st time. If I ever have it done over again, I'll have him/her look harder at pulses, flow, ect.

Edit - and no longer will I say ccsvi to Dr's. Venous Insufficiency they'll all understand.
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Old 09-24-2010, 09:30 PM #17
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The mesh stent made now, is made of Titanium and a bit of Nickel in it. This way you can still have MRI's with the metal in you. Adn not beep at the airport.

I'm going, nothing is going to stop me. It has been over two years that people have been having this procedure. There are videos that show how it has helped over 2000 people, and they made up to date video's of these people two years out.

Another website has people talking about how they are doing, good ones or nothing at all yet, and how they feel about it down the two year road. Many say they would do it again if needed. Some will need it again as not all the blockages are clear or some have re-stenosed and need stents.

If you are young and not bad off you can wait. You probably have the time to. I feel it is well excepted in the community and they have been doing this procedure for tons of years for other purposes.

They just need the training for the testing protocol. They have to see MS patients MRV's and a non MS MRV's and find the difference, if any. Same with 3D Ultra-sound Doppler's for reflux and blockages.

The best test is the Catheter Venogram, just prior to the Catheter Venoplasty, but you must have a test before that. JMO
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Old 09-24-2010, 10:51 PM #18
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I suppose it could be the placebo effect? Or something like that? I know that if you are very up and positive about something you can have the feeling that it is doing something when in fact it is really just an increase of endorphins and the like. After the initial excitement wears off, the former condition returns.

I have a lot of questions about this (and any other supposed MS "cure"). There have been lots of snake oil salesmen out to make a buck and most of these just don't pan out.

My niece tried many of these over the years, from bee sting therapy to oxygen chambers and she's still in very poor shape from the MS. I am very critical and so far only open to those that have gone through clinical trials and have shown effectiveness for treating MS when it comes to medical procedures or medications.
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Old 09-24-2010, 11:16 PM #19
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There are videos that show how it has helped over 2000 people, and they made up to date video's of these people two years out.

Another website has people talking about how they are doing, good ones or nothing at all yet, and how they feel about it down the two year road.
Could you post the links to these sites? I'd love to see some of the success stories. I really, really do hope this is a legitimate fix for these people.....and the ones who are going to give it a try. It would be such a blessing.
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Old 09-25-2010, 11:46 AM #20
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Quote:
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Could you post the links to these sites? I'd love to see some of the success stories. I really, really do hope this is a legitimate fix for these people.....and the ones who are going to give it a try. It would be such a blessing.
try this. http://www.facebook.com/group.php?gi...&v=wall&ref=mf
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