This Is MS Multiple Sclerosis Knowledge & Support Community

Inclined to agree with you Phil. The fuss could make it difficult for others to have the tests and procedures. The doctors need that space especially in these early days
We are fortunate here.

. I think it is important that we keep a lid on CCSVI in Oz and NZ for the present and not make a big noise in the mass media. That's what happened in North America and as a result of all the publicity, the plug got pulled on Dr Dake. Guys like Thomson and others in this part of the world need some breathing space to research, communicate and fine-tune the CCSVI protocol, IMHO.

Andrea

Brainteaser,
Thanks for the update _ I sincerely hope every thing goes well for you.

Re the re- steonsis where a stent had been placed, I read on another thread if am not mistaken, that tissue can grow over the stent and this could cause re-stenosis. I thought the post said that the person concerned had to undergo ballooning after the stent had been placed to re-dilate the vein concerned. Just my two cents worth.

Once again I wish you all the best.

Yes Opera, that's exactly what happened - the stent had tissue growing over it and had re-stenosed. Prof T found it difficult to get the catheter through the stent which he subsequently ballooned.

Thanks for your good wishes - it's early days but I'm quietly confident he has made some improvements, as others have found.

Phil

Brainteaser wrote:Yes Opera, that's exactly what happened - the stent had tissue growing over it and had re-stenosed. Prof T found it difficult to get the catheter through the stent which he subsequently ballooned.

Thanks for your good wishes - it's early days but I'm quietly confident he has made some improvements, as others have found.

Phil

Hey Phil-
Glad the docs got in there and cleaned you up. Jeff had a "thickening" in the lining of his left stent, found three months after the first procedure and it was ballooned. Dr. Dake didn't call it a restenosis, since blood was still moving thru it- he called it a problem with the endothelialization of the lining of the stent.... but at Jeff's check up in November, it looked great...the lining was smooth and even. Jeff will stay on Plavix and baby aspirin for life. Dr. Dake still scratches his head..."you guys have the weirdest veins!" This is why I tell people to stay local. For some cases, there will be tune ups and after care. I'm glad you've got some docs in your home area. I am heart broken over how Dr. Dake has been treated...but he's an amazingly resilient guy. We'll continue on....Boston Medical Center went public today
keep up posted,
cheer

XX

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I'm not sure Bob, in answer to your question regarding the different assessments by different professionals. I suspect it might have something to do with their level of experience and the form of testing. Prof Zi did dopplers only whilst Prof Thomson did a venogram. Prof T is head of Radiology and has performed an angioplasty op countless times whilst others are just getting up to speed. I'll be interested to see how things pan out over time.

Phil

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XX

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Have my ultrasound on Thursday morning in Melbourne....here's hoping. See Prof T on Friday.....here's hoping even more!

Hey Kerri...you're famous across the world:

http://evanthornton.wordpress.com/2010/ ... australia/

hwebb wrote:Hey Kerri...you're famous across the world:

http://evanthornton.wordpress.com/2010/ ... australia/

Oh dear... sorry Phil!

I have been thinking a lot about this mass media issue and Prof T. The last thing I want to see is a stop being put to this because of any bad press. Thing is everything we post here, on youtube, facebook is public media already - it is only a matter of time, I think, before it hits the headlines, especially if Buffalo's next round of results are positive (or negative for that matter!). Kerri

Kerri,

You're a star! - and there's nothing to apologise about. TIMS, YT, FB etc are all OK - we need to get the message out to other CCSVI sufferers and supporting doctors. But I've learned that some of our doctor allies are getting a bit jumpy about TV and newspapers - presumably that's where opposing neuros etc. pick up all their medical expertise.

Phil

Hey Kerri, I wouldn't have known about CCSVI, ultrasounds or Prof T without you! I'm sure the medico's who are exploring CCSVI are serious and passionate about what they are doing, have a good understanding of the media and also the politics within the medical profession! Boundaries of understanding are always fraught with tension....and the way is forward!