Oh, Radeck?

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

Postby Lyon » Sat Nov 28, 2009 10:32 am

Last edited by Lyon on Thu Nov 24, 2011 10:35 am, edited 1 time in total.
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Postby jimmylegs » Sat Nov 28, 2009 11:00 am

way too much credit i think lyon...
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Postby MrSuccess » Sat Nov 28, 2009 11:35 am

Bob , Holly's family responded to her tragic death. They clearly stated that the Stanford surgery was not the cause of Holly's death. They also provided information that Holly's mother passed away from the same exact medical issue. You can research the posts here at TIMS.

I can lead a horse to water. I cannot make it drink. No matter how many times I have praised , defended and promoted CCSVI ...you continue to label me as opposed. Speaking of drinking ....are you at it again ?

It appears a certain ex-Sunday school teacher is having a major guilt meltdown . And is claiming to have been mislead .

Odd position coming from someone who claims to be so well informed and well connected .

In addition to Radek , I wish Dr. Dake a speedy recovery from having the knife removed from his back ....

You should be ashamed of yourself .

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Postby Brainteaser » Sat Nov 28, 2009 12:01 pm

All the best for a speedy recovery, Oliver - you are one gutsy guy!!!

As a fellow stentee of Tuesday last, I feel the anguish of you and your family. I'm not sure I'd have the same courage and good grace as you.

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Postby vendredi5h » Sat Nov 28, 2009 12:17 pm

Just read this topic...

Unbelievable! I'm sorry it happened to you Radeck. As many told you, I wish you'll be fine soon. And I want to thank you to be part of this still experimental procedure that I'll probably get done eventualy... when I'll feel it's as safe as it can be. But to reach this level of safety and knowledge, it's necessary that couragous ones take the risk. And you're definitly one of them. I hope you realize that your real bad complication certainly contributes to the evolution of CCSVI treatment. Knowing the price you've paid for that, I cannot say anything but thank you very, very much, and get well soon.

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Postby Rose2 » Sat Nov 28, 2009 1:51 pm

OMG!!! I just logged on here after a few days. What a shock to hear what has happened to you!
Please be a good boy and REST. We need you back here and feeling well.
Prayers for you and your family.
You are a true pioneer and we all appreciate what you have done for yourself and for MS.
You have been a good friend to me in the short time I have been here at TIMS and I appreciate you so much.
Please get better FAST.
and PLEASE let me know if there is anything I can do.
You know I am not far away from you. Sincerely, Rose
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Postby Jamie » Sat Nov 28, 2009 2:35 pm

Speedy recovery Rad.
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Postby Guest » Sat Nov 28, 2009 2:55 pm

Oh my my, what a huge setback. I can only imagine what you and your family is going through. Wishing you a speedy recovery. Be strong and hang in there.
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Postby Quest56 » Sat Nov 28, 2009 3:18 pm

This is shocking news for all of us, let me be another of the ThisIsMS members wishing you a fast and painless recovery. May you and your family's hopes remain strong, and your healing proceed quickly.

CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
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Springy stent

Postby AndrewKFletcher » Sat Nov 28, 2009 3:43 pm

The problem with veins is they inflate and deflate making it difficult to find the correct stent for the job.

Just look at the veins in your hands how they change and become visible or vanish depending on where you hand is in relation to your heart.

Arteries have strong walls and withstand internal positive pressure from the heart well, making them ideal for holding a stent in place.

Maybe a new springy type stent is required that expands and contracts with the veins.

Just thinking aloud here and trying to be helpful.

Oliver I wish you a speedy recovery also.

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Postby MS_mama » Sat Nov 28, 2009 5:43 pm

Lew you make some good points--I really hope that future patients will be clearly involved of the risks of the procedure. It's critical to obtain full informed consent, and that definitely includes knowing all the risks. I'm so sorry that people like you and Radeck have to be the ones suffering the complications in order to blaze the trail. I only hope the benefits end up outweighing the complications.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby alphons » Sat Nov 28, 2009 7:08 pm

Radeck, please let me remind you, there are thousands of people all over the world who are reading and feeling, and crying on the issue of your stent 'bouncing around in your heart' :cry: . You are definitely not alone on this. I hope this will ease your pain a bit. You and Jeff, and all the other pioneers are doing so much for all of us. I hope you will recover soon. The Netherlands is watching you and we are helping getting the word out over here on CCSVI. :wink:
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Postby CureOrBust » Sat Nov 28, 2009 7:57 pm

So sorry to read this, and best wishes.
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Postby radeck » Sun Nov 29, 2009 8:19 pm

I came home last night and have felt a strong pounding sensation in head, shoulders, and arms since this morning. Dake recommends that I get another X-ray (have had so many by now including the two venographies that if I survive this ordeal I'll probably die of cancer in a couple of years) tomorrow, either here in the East Bay or at Stanford, to see if the stents are still where they were put. I'll probably be driven to Stanford again since there might be less of a wait.

In case this is my last post:

1) I love you all and wish you the best of luck
2) Besides luck, I've always tried to encourage everyone here to engage in critical reflection on CCSVI and it's treatment, to not ignore discrepancies between the docs findings and assume that they'll try to resolve them themselves, to try to see the good will in everyone's posts and to try to truly help them, as opposed to belittling or ignoring anybody for any reason (this may sound like a complaint, but is really more a reminder).
3) Get a written agreement of *exactly* what you verbally agreed to have done on you. If it's venography with treatment only after consent, request a written agreement of exactly that. Since they're busy during venography, the docs might otherwise be more likely to forget that agreement.
Last edited by radeck on Sun Nov 29, 2009 8:40 pm, edited 10 times in total.
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Postby Rose2 » Sun Nov 29, 2009 8:24 pm

SO happy to see your post. Thank you for checking in.
No, it is NOT your last post unless you are dumping us.
Please rest and take care.
Prayers and Hugs, Rose
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