CCSVI - Aussie Action!

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

CCSVI - Aussie Action!

Postby Brainteaser » Fri Sep 11, 2009 10:44 pm

Hi All,

Just to let any Aussies out there know that Cure and I are on the hunt for vascular surgeons in Australia who might be prepared to become involved with CCSVI. We've got a few names who seem interested - 2 saw Dr Simka's presentation in Monaco and another knows Dr Dake.

Personally, timing is important - the sooner the better; especially with the long hot Australian summer not too far away.

Prof Zamboni welcomes the global development and expansion of his work. As Cheer says, co-operation and co-ordination are critical. If we can find one or two local vascular surgeons (Cure's looking in Sydney and me in Melbourne) then there's the potential to direct MSers to a vascular surgeon who will be able to develop and hone their skills, as with Dr Dake in the US.

We are truly fortunate to have people of the calibre of Prof Zamboni and Dr Dake who are leading the way in this exciting, new area of MS research. The timing is ideal for aspiring vascular surgeons in various parts of the World to benefit from their expertise, advice, professionalism and gracious behaviour.

Phil
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Postby CureOrBust » Sat Sep 12, 2009 12:24 am

And further along the reach of this in Australia. I recently spoke with who I was told is the medical director for the Australian MS Society, who is interested in this research. This Dr also knew the vascular sugeon I am speaking to in Sydney.

Problem, my actual neurologist is heavily involved with MS here and around the world, has not "come on board" so to speak, as yet.
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Postby mrhodes40 » Sat Sep 12, 2009 8:11 am

Wow you guys, great news!

I am glad you connected. It will take time for the general neurological community to agree that this is an addressable issue in MS...let alone that it is causative and therefore critically addressable. It is positive news that Jacobs is on board, that will help as time goes forward.
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 Brainteaser » Fri Sep 18, 2009 11:10 pm

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Last edited by Brainteaser on Thu Aug 07, 2014 11:15 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Sep 19, 2009 7:19 am

I was one of the few people who had luck getting her local university vascular department to do dopplers.

I wrote a plea stressing these points:

vascular doctors would be the ones to test and evaluate this

it is a vascular problem not necessarily a neuro on-I really stressed that I did not know if this was the cause of MS and I was not sure I needed to know that--that what I wanted was to make sure I had healthy circulation and the vasc department was the place to find that out

I left any question of treatment in the air, felt that once they saw the scans they would come on board I didn't want to overwhelm someone that had not even been convinced there was reflux with concern about treatment cause it might feel like doing the scans would be biting off treatment when they had no published research to go on yet(in fact they saw reflux but were not interested in treating, the reflux did not seem "severe" on doppler and while it was interesting it was not something they wanted to go further with)

and finally, I did hit the new paradigm idea a little bit "at the forefront of research" etc.

As I said I had luck getting dopplers but ended up being treated by Dr Dake....
hope that helps a little good luck!
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 cheerleader » Sat Sep 19, 2009 9:02 am

Brainteaser....
way to go. It helps that this doctor is fresh from hearing Dr.Simka- speaking with peers is always more convincing for the docs.

The thing that really pushed it over the edge for Dr. Dake was that no one has ever looked at the jugular veins in relation to brain health before. No one. That simple fact astounded him. How could we know about the venous system for the liver, kidneys, heart- and understand how problems with drainage affect those very important organs....AND HAVE NEVER STUDIED VENOUS RETURN OF THE BRAIN? And yes, being a part of something so revolutionary excited him enough to put his very successful cardiothoracic career on hold....to work with MS patients exclusively for the last six months.

I hope your vascular doc sparks to this. I honestly don't think I "sold" CCSVI to Dr. Dake as much as it "found" him....and for that part, I also recommend prayer.
let us know how it goes-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Sat Sep 19, 2009 11:47 am

cheerleader wrote:How could we know about the venous system for the liver, kidneys, heart- and understand how problems with drainage affect those very important organs....AND HAVE NEVER STUDIED VENOUS RETURN OF THE BRAIN?


That is mind blowing to say the least.

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Postby Brainteaser » Mon Sep 21, 2009 11:57 pm

Great news, folks!! :D My Melbourne vascular surgeon is going to 'bite the bullet' and operate in 2 weeks time! - first time in Oz, first time outside SanFran and Ferrara (I think) - Sorry GiCi; got in ahead of you, mate! :)

He's going to do a venogram and the refluxed right jugular by ballooning, but at this stage he's not sure about the blocked left jugular. He's a bit apprehensive about stents but will consider options.

2 riders - he needs to inform the hospital that it's a new procedure and he wants to run it past my neuro, but fundamentally he is ready to go!

Best of all, he seems your real Action Man - no beating around the bush, flim-flam; just get on with things. I think what sealed it was that I happened to email him the day after he met Drs Simka and Zamboni in Monaco....Fate!! :)

He was appreciative of all the stuff I sent him from TIMS (take a bow, Marie and Cheer :) ) and he's even joined the Facebook CCSVI site - so keep the posts coming, guys (scorpion et al, excepted :roll: ).

I can see he moves pretty fast. He even tried to get Michael Dake on the phone when I was with him, which had me wondering a little, given that with the time difference between Melbourne and SF, it would have been about 10pm Sunday night, SF time and Dake would have been just wandering off to bed with his hot toddy. :wink: But what's good is that he is keen to catch up with Messrs Zamboni and Dake to discuss detail.

I'll keep you posted.

Phil :D
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Postby ErikaSlovakia » Tue Sep 22, 2009 4:31 am

Hi Phil!
Great news! Congratulations! :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby LR1234 » Tue Sep 22, 2009 4:52 am

Wow, thats amazing!!! Such great news!!!! I am so pleased:)
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Postby Ernst » Tue Sep 22, 2009 4:54 am

Wonderful, just wonderful. And there will be more.. and more these operations.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

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Postby whyRwehere » Tue Sep 22, 2009 5:53 am

Sounds promising!
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Postby Arcee » Tue Sep 22, 2009 7:00 am

Really exciting! Congratulations -- what great payback for your efforts.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Jamie » Tue Sep 22, 2009 7:10 am

That is unbelieveably good news!!!

Well done!!

You should deffo set up a call with this Doc and Dr. Dake prior to the surgery!

Persistence pays off doesn't it?!
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Postby mrhodes40 » Tue Sep 22, 2009 7:29 am

WOW!! Great news for everyone!!! and wow how great that he ahd JUST been to Monaco. Dr Dake 'just happened' to be going to cx symposium like a week after Cheer wrote him, where his presentation was the one just before Zamboni's.....

Dr Dake will answer email pretty much 24/7, he keeps his blackberry in his holster like a quick draw McGraw. :lol: GOD BLESS HIS FAMILY!!! he seems to live eat and breathe medical research. (No wonder he has about 190 papers to his name)

I think he'd be delighted to talk to your doc, he loves to chat about CCSVI he is really excited about the whole thing, sounds like you guy would really enjoy conversation too!

pm if you want it.
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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