Dr. Brandes---treat CCSVI now, remove MS from the equation

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

Dr. Brandes---treat CCSVI now, remove MS from the equation

Postby cheerleader » Fri Apr 23, 2010 11:49 am

So glad to see a doctor talking about what I have been saying for over a year....CCSVI in MS patients can create an hypoxic situation (like congestive heart failure) Time to take MS out of the equation and help those starving for oxygen.

As a young doctor, I quickly learned the signs and symptoms of congestive heart failure, especially the ice-cold extremities and the patient gasping for air as blood backed up in the veins of the chest and fluid leaked into the lungs, preventing them from supplying oxygen. All of that quickly and dramatically reversed within minutes of administering appropriate medication to help the heart pump the blood more efficiently.

Then, in the same way, does it not make sense that improving blood drainage in the neck veins would quickly improve the level of oxygen in brain tissue, relieve any congestion and enhance the function of nerve cells, including the autonomic fibres that control skin temperature in the extremities?

Irrespective of whether an unblocking procedure is, in any way, effective in reversing or halting the progression of MS, Duncan Thornton is not alone in experiencing a huge improvement in his quality of life. As documented recently on CTV's W5, the same type of benefit was observed by Steve Garvie and many others whose veins have been treated.


link to article by Dr. Brandes- TAKE MS OUT OF THE EQUATION

cheer
Last edited by cheerleader on Fri Apr 23, 2010 8:13 pm, edited 1 time in total.
Husband dx RRMS 3/07
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http://ccsviinms.blogspot.com
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Postby Billmeik » Fri Apr 23, 2010 12:04 pm

If, as is becoming increasingly evident, symptoms such as severe fatigue associated with MS can be effectively relieved by unblocking a vein, why shouldn’t a compassionate publicly-funded health care system pay for it? After all, millions of dollars are spent every day on far less justifiable therapies (inappropriate antibiotic prescriptions immediately come to mind).


ya
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Postby babiezuique » Fri Apr 23, 2010 12:41 pm

We can now see the light... Whit this type of reflexion. We all know that those ''links'' have to be find... but not before we help the one who are suffering now...

Treating ccsvi is not a dangerous, super risky business.... The way neuros are talking tells us how deeply they really dont have a clue of how msers feel everyday...

I have a pathology in my jugular, a big reflux, actually I'm not loking for any link... I want this anomaly to be adress by a good IR, what neuros think about this... is not an issue for me now.

Thanks Cheer ;)
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Postby cheerleader » Fri Apr 23, 2010 6:47 pm

If, as is becoming increasingly evident, symptoms such as severe fatigue associated with MS can be effectively relieved by unblocking a vein, why shouldn’t a compassionate publicly-funded health care system pay for it? After all, millions of dollars are spent every day on far less justifiable therapies (inappropriate antibiotic prescriptions immediately come to mind).

So yes, especially given the delay and deficiency in funding Canadian clinical trials of CCSVI, I have reversed my previously-stated belief that diagnosis and treatment of blocked veins should only occur inside such studies.

In taking this position, I have reacquainted myself with the fact that advances in understanding and treating cancer have occurred despite the enrolment of only 1% of patients in clinical trials. Do we withold cancer treatment from the other 99% who are not in a study? Of course not. Then why should MS be different?


WHY IS MS DIFFERENT THAN CANCER? Why are only 1% of cancer patients enrolled in clinical trials...yet all MS patients must be involved in clinical trials before they can have their veins opened.

Thank you, Dr. Brandes--
cheer
Husband dx RRMS 3/07
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http://ccsviinms.blogspot.com
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Postby zinamaria » Fri Apr 23, 2010 10:41 pm

Indeed! A voice of reason. And to openly state the change of his position as an 'evolution' in thinking...that was brave. He'll be criticized by the naysayers for being 'wishy-washy', no doubt.
It seems to me there will always be enough people with MS who will participate in studies. But in the meantime why should we be denied a treatment that can and will for most improve the quality of our lives?
I'm truly baffled by the entire controversy, that there is even one in the first place. What about alleviating suffering? Or have 'they' forgotten? (i.e. 'why open an unblocked vein')

Thank you for posting cheer,
z
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Postby ndwannabe » Fri Apr 23, 2010 11:57 pm

Thanks for posting Cheer! Glad to hear the voice of reason.
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Postby cheerleader » Sat Apr 24, 2010 9:17 am

I was also happy to see that a doctor is saying we do not need to wait for clinical trials, sham surgeries, and the approval of the AAN to treat a vascular condition. I've been repeating this over and over (since seeing the difference in Jeff) and been blamed for avoiding the scientific process of research. I'm sorry. Venous stenosis and occlusion is a problem in its own right. And whether or not it turns out to be the only ignitor of the MS process or one of many....it deserves to be treated.

For MS patients who have more time and the desire to be the 1% tested in double blinded clinical trials...go for it! More thanks to you for advancing the science. But for those who would like normal venous return to their brains, why should they be denied a known medical procedure?

I hope there are more Dr. Brandeses who will come forward. Kuwait understands. Many IRs and vascular surgeons understands. And I think we've seen that many MS patients understand.
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http://ccsviinms.blogspot.com
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Postby patientx » Sat Apr 24, 2010 9:45 am

In taking this position, I have reacquainted myself with the fact that advances in understanding and treating cancer have occurred despite the enrolment of only 1% of patients in clinical trials. Do we withold cancer treatment from the other 99% who are not in a study? Of course not. Then why should MS be different?


What is the doctor's point with this statement? The fact is, cancer medicines do undergo trials, before they are prescribed. CCSVI treatment has undergone one, poorly designed trial.

But for those who would like normal venous return to their brains, why should they be denied a known medical procedure?


Who is denying them? Anyone can make an appointment with an IR or vascular doctor.
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Postby cheerleader » Sat Apr 24, 2010 9:53 am

patientx wrote:Who is denying them? Anyone can make an appointment with an IR or vascular doctor.


Really? Do tell, patient. How does "anyone" do that...because there are thousands of Canadians and Brits and French and Irish and Greeks and Italians and Spaniards and MS patients around the globe who would love to be able to see an IR, but cannot get a referral. That's the problem in Canada that Dr. Brandes is addressing.
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http://ccsviinms.blogspot.com
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Postby hopeful2 » Sat Apr 24, 2010 9:58 am

What a great link---thanks Cheer. Despite my progressing cog fog the words in this article really made sense to me. It truly is a quality of life issue, and I'm pleased to hear Dr. Brandes speaking on this so effectively. Onwards we go!

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Postby Lyon » Sat Apr 24, 2010 9:58 am

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Postby cheerleader » Sat Apr 24, 2010 10:14 am

There is nothing funny about this.
Venous stenosis is a known disease and is treated around the globe. Dr. Brandes is speaking of removing MS from the equation- and allowing the venous insufficiency to be treated as such.

If MS must be part of the equation for governmental approval, Dr. Zamboni asks patients who are out of wait to request "compassionate care."

Compassionate Drug Use
Medical professionals use the term "compassionate use" to refer to the treatment of a seriously ill patient using a new, unapproved drug when no other treatments are available. Drugs that are being scientifically tested but have not yet been approved by the United States Food and Drug Administration (FDA) are called investigational drugs. Being able to use one of these drugs when you are not in a clinical trial has many names, but is most commonly referred to as compassionate use.


I do not understand why this is funny? I'm talking to MS patients (and caregivers) around the globe everyday who do not see any humor in being denied treatment of their malformed veins.
cheer
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http://ccsviinms.blogspot.com
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Postby IHateMS » Sat Apr 24, 2010 11:00 am

Billmeik wrote:
If, as is becoming increasingly evident, symptoms such as severe fatigue associated with MS can be effectively relieved by unblocking a vein, why shouldn’t a compassionate publicly-funded health care system pay for it? After all, millions of dollars are spent every day on far less justifiable therapies (inappropriate antibiotic prescriptions immediately come to mind).


ya


Amen!
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Postby IHateMS » Sat Apr 24, 2010 11:02 am

cheerleader wrote:
patientx wrote:Who is denying them? Anyone can make an appointment with an IR or vascular doctor.


Really? Do tell, patient. How does "anyone" do that...because there are thousands of Canadians and Brits and French and Irish and Greeks and Italians and Spaniards and MS patients around the globe who would love to be able to see an IR, but cannot get a referral. That's the problem in Canada that Dr. Brandes is addressing.
cheer


Amen again.
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Postby IHateMS » Sat Apr 24, 2010 11:05 am

cheerleader wrote:There is nothing funny about this.
Venous stenosis is a known disease and is treated around the globe. Dr. Brandes is speaking of removing MS from the equation- and allowing the venous insufficiency to be treated as such.

If MS must be part of the equation for governmental approval, Dr. Zamboni asks patients who are out of wait to request "compassionate care."

Compassionate Drug Use
Medical professionals use the term "compassionate use" to refer to the treatment of a seriously ill patient using a new, unapproved drug when no other treatments are available. Drugs that are being scientifically tested but have not yet been approved by the United States Food and Drug Administration (FDA) are called investigational drugs. Being able to use one of these drugs when you are not in a clinical trial has many names, but is most commonly referred to as compassionate use.


I do not understand why this is funny? I'm talking to MS patients (and caregivers) around the globe everyday who do not see any humor in being denied treatment of their malformed veins.
cheer


And another Amen. I am going to transform to the actor in Network and scream from the window =I am mad as hell and I am not going to take it anymore=
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