This Is MS Multiple Sclerosis Community: Knowledge & Support

I am so mad about the negative tone taken with everything written about Dr. Dake and the Stanford CCSVI experience! Here is another article pointing out ONLY the negative and NONE of the positive. Please post a comment in support of Dake at the bottom of this article. He's been a strong advocate for us and is really being treated unfairly. Most of the stenters have had amazing recoveries and have regained their life from the grips of MS. We need to get our stories out there to balance this one-sided reporting. Thanks

http://www.stanforddaily.com/2010/03/31 ... ter-fears/

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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.

Done!

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Nice work Beth!
The replies have been amazing so far!
Keep them coming, we need to show our support and demand fair reporting!

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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.

Big Kudos also for his upcoming efforts to help with the TO doctor fundraiser.

I don’t get it, what’s so negative about this report? It relays nothing but the facts, without ascribing blame or saying anything negative about Prof. Dake. Universities are conservative and cautious institutions. Like banks apart for their reputation universities have no real asset. This is indeed in stark contrast with the exuberant Buffalo pre press release and its subdued follow-up that has left me wondering how responsible the docs involved are. This release ends:

“It remains to be seen whether or not the FDA grants Stanford clearance for a clinical trial involving 100 patients in which neuroimaging could confirm whether or not vein blockage is actually a problem related to MS, and whether or not treatments like Dake’s and Zamboni’s could be effective.”

This is good news, they are seeking to run a trial with 100 patients. And, I too want my life back. Yours .

I was never a patient of Dr Dake, but I believe in his CCSVI work, that it will lead to more knowledge about CCSVI to the benefit of hundreds of thousands of MS patients. I don't understand why the FDA would not allow this research to happen !!! I don't understand the focus on all the negativity and not on the potential relief from suffering for all people with MS. To most people, MS is out of their radar. All we are asking for is to let CCSVI be studied and researched and Dr Dake is the right man at the right place at the right time.

ozarkcanoer

Hello...

Posted below comment...

Your headline says "Prof halts MS Trial after fears"
First of all there was NOT an MS Trial. Dr Dake was testing for abnormalities in the Venous system, and where it was identified, treating the narrowing or stenosis to restore proper blood flow from the brain.
The patients who have had major degenerative symptoms, over many years of blood and iron deposits building within the brain, could not improve thru any traditional Neurological treatments.
Currently, the therapies offered by Neurologists are almost entirely drug prescriptions that have the most toxic side effects of any drug categories. In addition, there are 15 known fatalities from the use of Tysabri a MS drug that has side effects of (Tysabri can cause serious viral infections that can cause severe brain damage, disability or death. These infections are opportunistic, and because of Tysabri, the body will not be able to defend itself. )
Furthermore, on the Tysabri website in the side effects section, it specifically states,

TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML).

The actions of the FDA today specifically require a change in the instructions on the bottle and with the packaging of the drug, warning the public of the chances and risks of PML.

The FDA further deemed that it would not reduce or restrict production because the occurrence of PML in patients is low enough not to outweigh the benefits over all to patients using the drug.


In every single instance NONE of the exisiting drug treatments IMPROVE any MS symptom. The objective is to SLOW DOWN the progression of the disease only.
With the endovascular treatment of opening up blocked azygeous and jugular veins, patients have had improvement in their symptoms in as short as 2 hours after the procedure.
It is remarkable, that this theory and treatment can cause so much fear to everyone EXCEPT the patients. The Pharmaceutical Industry earns $8.1 billion per year!!! in MS drug therapy. NEVER improving any patients symptoms, and when a treatment becomes incredibly succesful without using drugs, it causes FEAR.
You are using facts for a part of your article....and that is fine, however a good journalist reports fairly and accurately.
Talk to the patients for a fair point of view.
You would be wise to do a follow up article.

Mark H.

.

Lyon...geeeez.
This thread is here to support Dr. Dake and CCSVI.

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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.

Personally, I'm hoping the Stanford Trials will indeed take place this summer, and hope to be one of the 100 patients.

As a possible candidate for the angioplasty/stent procedure I want to have ALL the information possible so I can make an informed decision, the good and the bad. I certainly don't want to end up with more problems than I have right now. But if selected for the trials, it's just that a trial, as in Trial & Error. It's a learning experience for the physicians and a possible benefit/risk to the patients.

We now have truly one post-procedural death, one migrated stent to the heart, one vein & valve replacement surgery necessary post procedure and there will undoubtedly be more negative post procedure occurrences right along with the glowing, I can now stand/walk again experiences. It's the chances the trial patients must weight and I plan on being informed.

I for the life of me can't see why anyone at all would stand in the way of MS patients getting screened for CCSVI. What have we got to loose from that but time & money and no one is stopping me from spending my time & money gambling here in Jackpot, NV!!!!

With that said, I feel the article was not a negative slant. I think it was factual and didn't lean heavily in either direction.

The headline is what I take exception to, "Prof halts MS Trial after fears", but that's journalism, the idea is to SELL papers. Albeit in my eyes with a headline like that it belongs with the Star and the rest of the rags by the checkout counter!

Lora

.

We now have truly one post-procedural death, one migrated stent to the heart, one vein & valve replacement surgery necessary post procedure and there will undoubtedly be more negative post procedure occurrences right along with the glowing, I can now stand/walk again experiences. It's the chances the trial patients must weight and I plan on being informed.
[/quote]


Can you explain the vein and valve replacement story, I haven't heard it.

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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.

Hi Lyon,

I have personally and recently talked with Dr. Dake and I think the word "Concerns" would have been a better fit than "Fears".

"I'm not completely sure but that seems to the the student newspaper and they have pride in their school and there isn't much incentive for them to slam one of their own research professors"

But that's the point, Lyon, it's JOURNALISM and that's what a student of journalism is taught, to write a headline that GRABS the attention. I was taught the same thing in Art School.

I will not follow the Pied Piper, Kokopelli or any other flute player. I make my own decisions and take my own Knocks. I'm not a blind or zealot follower of CCSVI, I am an individual with MS who is currently researching ALL my options.

I don't believe ANY doctor walks on water, they are human after all with all the same virtues and faults of our species. And I'm not just so sure either way that Dr. Dake did or didn't take liberties with his first CCSVI patients, that's something you can personally discuss with Radeck if you wish. But I stand by my opinion that the use of the term FEAR in the headline is an attempt to sell papers.

Magoo,

See Rici's thread, That is a one bad venous reflux caused by destroyed valve.

I have Congenitally Malformed Valves myself, so of course I am following his thread with great interest. Rici is still a proponent of CCSVI, it's just that he says this is a result of his procedure and that it proves the theory of Dr. Schelling. Magoo, if you haven't read his thread, you need to, it's important! He's suffering greatly, here's his latest post.

Hello
Today again around 3:00 PM I had a stroke blood in the Hypothalamus center. Lack of venous valves. Symptoms:chills at the beginning, fever of 39 degrees, severe headache, the inability to walk. Kept 6 hours.
Regards
Rici

Respectfully,

Lora

Hi magoo,

That is Rici's story, reported here - http://www.thisisms.com/ftopict-10732.html. Rici seems to be not the only one who is having greater problems after "destruction" of valves.

I think it is a cautionary tale that ought to be heeded by doctors and patients alike. It is still early days, relatively, and I feel a lot still needs to be learned. I will still go to Poland for treatment, but with the admonishment not to destroy my valves.

By-the-by, everyone, Rici still needs a lot of financial help to resolve his issue. Be generous.

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My name is not really Johnson. MSed up since 1993

Ive placed my report although It would be very nice to see more comments of support .

Silver