Cheer's excellent adventure

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

Postby zap » Tue Sep 08, 2009 8:57 am

Amazing ... 100%.

Even when people had completely different opinions (venous stenting was one such topic


I am eager to hear more about that debate, as one who is totally sold on CCSVI, but still a bit on the fence with the stent procedure (scheduled for Dec ... but haven't yet booked tickets).
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Postby MaggieMae » Tue Sep 08, 2009 9:04 am

"Even when people had completely different opinions (venous stenting was one such topic)...everyone spoke with respect."

Cheer, I've wondered about the venous stenting (from the beginning of this forum) since Zamboni wasn't using stents and the procedure worked for his patients, but it did not work for Dake's. I can't wait to hear what the thought is on stenting vs non-stenting.
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Postby MaggieMae » Tue Sep 08, 2009 9:07 am

Zap - Sorry to repeat. I must have been typing as you were posting.
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Postby Jamie » Tue Sep 08, 2009 9:30 am

Good stuff.

Keep it coming.

With all due respect I don't give the tiniest, tiniest, tiniest crap if the odd naysayer is 'convinced' or not. Its gotten too big already and can't be stopped.

We've got Neurologists, Venous specialists etc from Stanford, from Jacobs NI from major European research centers who are there in Bologna right now, asking questions and seem to see value in it. They are the people who matter right now and who have the ability to make decisions and scientific judgements much better than our enthusiastic amateurism.

Really, Joan's done as much as possible. Got Dake involved, got to Bologna, had her husband helped with surgery and along with Marie has really brought the word to the English speaking world.

Those of us with a more adventurous spirit, and perhaps who were more desperate at the time have followed them - jumped in, tested the water and found it warm.

It's all down to the docs and the media now. Sure we can help with spreading the word and sharing our experiences here day to day (good and bad as we all faithfully do) - but the cork is out of the bottle now the evidence and efficacy will stand and fall on its own merits.

And there are some who will never be convinced. A sizeable portion of people believe the moon landings were fake and that 9/11 was an inside job after all!

Trying to point out discrepancies in information found out third hand then posted on a user generated website and using that as if it somehow disproves a theory is ridiculous and shows a lack of experience in such debate and its not something I've either the time or the desire to get involved with.

Keep these tales coming Joan!
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Postby guitarguy » Tue Sep 08, 2009 11:04 am

If this procedure does in fact help MS, then there is no debate! I have yet to see the results of the people who had this procedure done 2 years ago. Sorry I had MS for almost 20 years now, I want to hear something positive for a change regarding treatments for MS. But I haven't seen where this proves to be anything but a theory.

Life will go on as usual for the average MS patient, neuro's won't listen to us be it revimmune or CCSVI. yes there will be the random people getting these treatments, and still in the long run not getting any better. There are people getting stem cell transplants for MS ( not avalible in the US unless you want aggressive chemo), if that helped us it would be there having that done. Over the years I have seen people praising therapies such as beta, helping them walk again to the current tysabri. We all end up back at square one. I seen it all before.

Sorry for being such a downer, but I am tired, very tired.
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Postby zap » Tue Sep 08, 2009 11:41 am

This isn't just a new treatment - it's a new paradigm.
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Postby Artifishual » Tue Sep 08, 2009 11:45 am

guitar guy. if you want to debate the validity of CCSVI then start your on thread. this one is about Cheer's experience, not whether you think this is bullshit or not.
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Postby CureIous » Tue Sep 08, 2009 11:50 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:56 pm, edited 1 time in total.
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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Postby skydog » Tue Sep 08, 2009 11:57 am

Bravo Dr. Cheer Thanks for connecting patients and lay persons alike to the world of the researching Dr's. looking forward to hearing more. This will truly bring about a much needed change. All hands on deck for a course change. Give me that horizon… Cheers, Mark
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Postby zap » Tue Sep 08, 2009 12:09 pm

I'm already wishing for studies of the vascular flow eof the people who relapsed post-intervention, vs those who did not.
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Postby mrhodes40 » Tue Sep 08, 2009 12:43 pm

It was also a pleasure meeting Dr. Marian Simka- a true gentleman and a scholar. He was fresh from a visit in Monaco, and it was wonderful to spend time with him and get to know him.


I think the world of Dr Simka based on his email and willingness to answer questions from us. He sent his power point from that trip mentioned above for me to upload for TIMS today and it is up on its own thread Dr Simka PP presentation from Monaco. I won't link it so you can comment on that thread.....
marie
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 Lyon » Tue Sep 08, 2009 1:19 pm

.
Last edited by Lyon on Sat Nov 26, 2011 10:25 am, edited 1 time in total.
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Postby cheerleader » Tue Sep 08, 2009 2:20 pm

Hey guys,
heading home tomorrow am. Went out to a terrific local Bolognese restaurant with Dr. D and his colleague, Dr. Josh Makower, a bio diagnostic engineer and inventor from Stanford. Ate too much pasta and had great conversation on diagnostic ideas for CCSVI. Josh saw some of Dr. D's interventions and wanted to come over and learn more.

I'll use my long flight home to finish transcribing my notes...barring any unforeseen Norwegian disturbances 8O

It could be the wine and cognac talking, but really...let's all just get along. It's OK to express doubts or whatever. I saw a bunch of doctors do it today in a very respectful and orderly way, and it was inspiring. We're all in this together. And I'm hanging around for my husband and son, because there's still more to the story.

I'll get back to you on the mainland- love you all,
a jet lagged and tipsy,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Sep 08, 2009 2:30 pm

Cheer,

I hope you have a great trip back and look forward to hearing all you learned.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Tue Sep 08, 2009 3:01 pm

sleep well and travel safely Cheer!!
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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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