radeck's Stanford experience

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

Postby mrhodes40 » Sun Nov 22, 2009 10:24 am

Well now, there's a likely bunch of gentlemen! Thank goodness this is going forward now, I hope your venogram goes well. It is the experience of Mark with his disappearing stenosis that causes Dr D to talk about dynamic stenosis I wonder?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby mrhodes40 » Sun Nov 22, 2009 10:25 am

Well now, I did two of this post how'd that happen?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Sun Nov 22, 2009 6:59 pm

Can anyone say Forrest Gump? Man I have my eyes shut in so many pictures. Maybe my friends are right when the used to say "Run Forrest, Run!!" to me :lol:
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Postby skydog » Sun Nov 22, 2009 7:09 pm

I just sent a new pic of the three balding but quite Hansom Guys to rad too put up in place of the one with your eyes closed. Might not be as good a picture of me but what I do for my mates. Cheers, Mark
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Postby radeck » Sun Nov 22, 2009 7:17 pm

redundant post
Last edited by radeck on Sat Jan 16, 2010 7:14 pm, edited 1 time in total.
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Postby cheerleader » Sun Nov 22, 2009 7:23 pm

As Jeff often tells me...it's just all that damn testosterone. He thinks hair is highly over-rated. me too. You guys look great :) Strong and happy. That's a good thing-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Sun Nov 22, 2009 7:49 pm

Have any of you thought about the question I've been having, why 100% of Z's patients had opened veins directly after balloon angioplasty in his opinion, and in most or all of D's patients the treated area re-narrowed immediately after removal of the balloon?

Could it be that they're treating different things? Perhaps Dake is sometimes treating the collapses resulting from a problem (=the real cause of reflux) somewhere else, such as a real stenosis, valve problem, etc, while Zamboni is treating the problem itself, thereby letting blood open the collapse with time? If one did angioplasty to a vein that collapsed because of a flow problem, it is to be expected that this segment re-collapsed, as long as the cause of the collapse has not been fixed...

Depending on what will be found during the venography, I may convince myself of the usefulness of getting a stent on one side in the clavicle area. However there would have to be a good reason, since I don't have any disability and Zamboni's patients responded so well to balloon angioplasty, if the actual cause of reflux or stenosis was found and treated that way.
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Postby Rokkit » Sun Nov 22, 2009 7:59 pm

Radeck, if it's just the accessory nerve issue that makes you want to wait on the stents, keep in mind very few people have reported issues with it since Dr D switched to the smaller ones. I have two up high and one low and have had no accessory nerve issues. Also, even if you had some trouble with it, it should at worst only last a few months. I'm not pushing for you to get stents at all- obviously none of my business, just wanted to point that stuff out. Good luck tomorrow.
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Postby Rokkit » Sun Nov 22, 2009 8:01 pm

Loobie wrote:Can anyone say Forrest Gump? Man I have my eyes shut in so many pictures. Maybe my friends are right when the used to say "Run Forrest, Run!!" to me :lol:


I just thought maybe you had been partaking of one of your favorite pastimes. :-)
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Postby Loobie » Mon Nov 23, 2009 5:55 am

I quit about 3 days before I went out. My pain level has dropped so much that the accompanying leg weakness that has always been there was pushed to the forefront. Not in pain, don't need it and then I had to ask "why am I continuing to make my legs weak on purpose?". The answer was habit and I haven't done any of that since. Matter of fact I was going to finish what I had and I flushed it! I feel much better in the evenings now so no need for the MJ. I dont' think that can do anything but contribute to my overall health now. It worked miracles for those killer headaches all the general "uncomfortableness", but I'm not having those, so bye, bye red eye :lol: .
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Postby cheerleader » Mon Nov 23, 2009 8:07 am

radeck....
Zamboni was able to treat some of the MS patients...but not all. The patients he couldn't help were the ones with high jugular stenosis. My Jeff, Marie, Lew, etc would not benefit from the Liberation. Dr. Zamboni treated 100 patients who had low jugular and azygos stenosis, which could remain more open with ballooning. But he's tested hundreds of other patients and didn't balloon them. And in those with jugular ballooning, 47% had restenosis after a year or so.

Wait if you're not sure. You're young, your MS is relatively mild, you can do so much with diet, supplements, exercise and lifestyle while the "kinks" are being worked out. You live in the Bay Area, you can get back to Stanford. Don't do anything you are not comfortable with. No one is insulted.
And congrats to Loobie for losing the doobie. Proud of you, hon!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Mon Nov 23, 2009 8:12 am

I thought I was writing in another thread...apologies Rad x
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Postby radeck » Mon Nov 23, 2009 8:44 am

Thanks everybody for your time and advice! Cheer, thank you for your thoughts re the difference between D's and Z's treatments. I still wonder though why Z is successful in treating MANY problems with balloon only, while D hardly ever succeeds. Does that make sense?

My hope is that we will find out in the venography what the problem with the lower jugular veins is, if there is a problem.

If, as Joan says, some of the difference between Zamboni and Dake is that Zamboni just doesn't treat the upper jugular veins, I should be fine with only balloon angioplasty, since there was no indication of a problem in the upper jugular veins according to Dake.

In any event, as I mentioned earlier, this appointment should be purely diagnostic (maybe the possibility of balloon angioplasty is part of that?).
Last edited by radeck on Sat Jan 16, 2010 6:58 pm, edited 5 times in total.
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Postby skydog » Mon Nov 23, 2009 9:16 am

Go rad! Have the best Day Ever! Mark
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Postby Rose2 » Mon Nov 23, 2009 10:04 am

Hi All!
I have been 'out of it'. Is today, Monday Nov 23 the day that Radeck is at Stanford for the stent Procedure? Just trying to put this together.
thanks, Rose
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