Oh, Radeck?
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 .
Mr. Success
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 .
Mr. Success
-
Brainteaser
- Family Elder
- Posts: 460
- Joined: Fri Jan 14, 2005 3:00 pm
- Location: Melbourne, Australia
-
vendredi5h
- Family Member
- Posts: 38
- Joined: Sat Oct 17, 2009 2:00 pm
- Location: Quebec, Canada
- Contact:
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.
Yannick
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.
Yannick
Radeck.
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
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
-
Quest56
- Family Elder
- Posts: 323
- Joined: Mon May 22, 2006 2:00 pm
- Location: Northern Calif Monterey Bay Area
- Contact:
Radeck,
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.
--Tracy
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.
--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
-
AndrewKFletcher
- Family Elder
- Posts: 792
- Joined: Wed Jan 14, 2009 3:00 pm
- Location: Paignton, Devon, UK
- Contact:
Springy stent
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.
Andrew
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.
Andrew
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 />
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' 
. 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. 
. 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. -
CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
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.
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 7:40 pm, edited 10 times in total.