Post a comment and support Dr. Dake

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

Postby Lyon » Fri Apr 02, 2010 2:38 pm

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Postby ozarkcanoer » Fri Apr 02, 2010 2:47 pm

Ruthless, I like how you think !!

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Postby magoo » Fri Apr 02, 2010 4:42 pm

We all know going into this that it is experimental. The risk and reward will be evaluated by each of us as we move forward.
I am so saddened by the problems Rici and Radeck have had, and I wish them a full and speedy recovery. The MS community will come to aid those pioneers who may need financial or emotional help. We are a good and generous bunch. Our hearts and prayers are with them.
This thread is about supporting Dr. Dake and giving the success stories as much press as the adverse events which took place at Stanford. Of course, since Dr. Dake took the chance to treat my venous insufficiency and I have had the chance to know and learn about what a wonderful and professional man he is, I feel indebted to him. His care and continued involvement with all of his first CCSVI patients should be admired. Because of his work with us, CCSVI has gained much more recognition.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Ruthless67 » Fri Apr 02, 2010 4:59 pm

Magoo,

The MS community will be forever indebted to ALL the doctors, now and in the past, who have put their professional careers on the line in the name of MS research, and the courageous individuals who have and will be participants in the research trials.

Hi Lyon,

I know it’s a technicality, but here’s the thing.

The headline read, “Prof. halts MS Trial after fears". Dr. Dake became Professor Dake in December, 2009. If it was the administration the author was writing about it should have read, “Administration halts MS Trial after fears".

Lora
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Postby Lyon » Fri Apr 02, 2010 5:08 pm

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Postby patientx » Fri Apr 02, 2010 5:14 pm

magoo wrote:the problems Rici and Radeck have had, and I wish them a full and speedy recovery.


I'm not sure I fully understand the problem that Rici had with his jugular valve, but it sounds pretty serious. I do know that when a wire-mesh stent travels and gets stuck in the heart, it can cause permanent damage to the chambers and valves in the heart. So, I don't think there's going to be a full, let alone speedy, recovery..
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Postby Rose2 » Fri Apr 02, 2010 9:11 pm

Magoo,
Just a quick stop by here. gotta run.
I will post to to the link tomorrow. thank you for the link.
I am curious as to why no one from Stanford has asked to see US the Stenters and to hear our stories and SEE us!
I am going to request a viewing. for them to view ME. I will let you know what I hear.
Not to Dr Dake but this will be sent to all of the MDs listed under Neurology on the Stanford website. Why aren't they curious to see me?

To all of those who keep arguing this treatment, I am sorry, but IT WORKS. IT IS THE REAL THING FOR ME. If others are unsure or hesitant, that is just fine. I understand and completely respect that, but do not argue my healthy results. I am MS FREE.
Thanks Magoo. I will get over there asap. Sincerely, Rose ;)
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Postby ndwannabe » Fri Apr 02, 2010 9:16 pm

Rose, off topic here, did your get my apologies (PM) ?
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Postby Johnson » Fri Apr 02, 2010 9:46 pm

patientx - to the best of my understanding, Rici had a successful treatment on his left jugular in Aug. 09. He felt much better, and went back for right IJV in November, at which time the valve was destroyed. Because he has a vein that is 3x normal diameter, a turbulence and very severe reflux ensued, which is thought to be affecting the hypothalamus, which is causing him some extreme problems. He now needs to have a vein graft (with valve) from his leg. The only place able/willing to do it is in Israel, and it will cost $40 Gs.

As to Radek, he is lucky to still be with us, from my understanding. I have not read anything from him for a long while, so I hope that he is OK. Open-heart surgery is no joke.
My name is not really Johnson. MSed up since 1993
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Postby CureOrBust » Sat Apr 03, 2010 5:01 am

Posted my support. I spoke with Dr Dake over a year ago, he is a saint, and a scholar. I wish him and his work the best.
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Postby CureOrBust » Sat Apr 03, 2010 5:14 am

Lyon wrote:It just seems that it might come to mind to more cynical people that if Dr Dake decided on his own to stop, why are we all gathered in this thread to sympathize with his being forced to stop mid stream?
You just do not get it. The question is why are you here to question it. (NB: no question mark at the end...)

This thread was started to make people aware of the article and aware of the opportunity to post a comment, possibly of support. I have been hoping for any way to show my support to this man.

In any persons darkest hour, one can have doubt about what they have done. For the 1 in a million chance that he may hear my words, or feelings of support and it would provide a second of comfort, I would be overjoyed that I posted.
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Postby ErikaSlovakia » Sat Apr 03, 2010 5:40 am

Johnson wrote:patientx - to the best of my understanding, Rici had a successful treatment on his left jugular in Aug. 09.

I think this is wrong information. As far as I know he had his first Doppler in August 2009 and he had his first treatment in October 2009 - I was visiting him in hospital in October 2009, I was talking to him in person.
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 Lyon » Sat Apr 03, 2010 6:14 am

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Postby patientx » Sat Apr 03, 2010 6:59 am

Johnson wrote:patientx - to the best of my understanding, Rici had a successful treatment on his left jugular in Aug. 09. He felt much better, and went back for right IJV in November, at which time the valve was destroyed. Because he has a vein that is 3x normal diameter, a turbulence and very severe reflux ensued, which is thought to be affecting the hypothalamus, which is causing him some extreme problems. He now needs to have a vein graft (with valve) from his leg.


Thanks for the explanation.

I was going to go back and delete my post, since it isn't in keeping with the intent of this thread. But others had already responded, so doing it now wouldn't make any sense. Sorry everyone.
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Postby magoo » Sat Apr 03, 2010 7:22 am

Thank you Rose and Cure for trying to keep this thread on topic :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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