This Is MS Multiple Sclerosis Community: Knowledge & Support

FYI.

http://www.cbc.ca/health/story/2010/04/ ... veins.html

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I am very very surprised by this. So is Dr. Z saying that Kuwaiti initiative is not correct since they plan to treat patients who have this defect and dont have any intention to do "study"?

I think Zamboni is just trying to avoid problems being conservative. He rejects the use of stents (oponents normally use the few encountered problems against his theory) and he rejects the lack of control that would appear in a widespread treatment (again, any problem that could appear would be used against him)

Don't forget that others already had problems with their governments and medical institutions for saying what he is saying.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

I listen to the whole presentation rather than second hand reports. I did not understand Prof Zamboni to say that Kuwaiti pwMS should not get involved in that trial. The Kuwaiti trial meets Prof Zamboni's suggestion for treating of CCSVI in that it uses Balloon Venoplasty (PTA), involves Neurologists and records interventions. Prof Zamboni would like Neuros to be involved when pwMS undertake CCSVI therapy. He was also clear that stents should not be used in the first instance but that ballooning should be repeated if re-stenosis occurs.

Hopefully the transcript will be available in a few days so precise words can be quoted, not media reports.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Zamboni is saying that CCSVI is unproven and surgery using stents may in the long run do more harm than good. He is also saying that if people choose to receive stent treatment to open their "blockage" they should do it in a safe controlled situation where their progress is closely monitored by qualified caring doctors. Most importantly Zamboni urged people to follow his advice and NOT the advice of the "blogger patients" that have popped up all over the internet. That is what he said.

I think to get this theory investigated and off the ground there needs to be as little opposition as possible. Those trying to quash CCSVI (and I do believe there are groups trying to do this) will be collecting as much ammo as possible so what Zamboni is trying to minimise the ammo.

"We need baby steps,"

I’m 47 and turning old in an alarming pace. Steps, what steps?

"People might not only get hurt, but…”

I already am hurt; everything I ever hoped for, dreamt of, worked hard for is fading away.

One month in our lives equivalents 5 in a ‘normal’ life. I’m willing to take the risk. People all around us engage in risky behavior, is that a reason to hold a press conference to advise against it?

And yes, they are playing the PR game.

From the webinar, I took away an underlying message about patient rights. Listen to Dr Zivadinov's presentation and the Q&A. The researchers (Zamboni, Zivadinov etc) cannot demand these on our behalf. It is our role to demand them.
My rights as an expert patient are:
- there is a correlation between CCSVI and MS. I must be allowed to get tested for CCSVI.
- if CCSVI is identified, then I must be allowed to undergo treatment for the symptom CCSVI, provided I am fully appraised of the risks involved.
My rights are now, not after years of research. The question is:
Are pwMS organised enough to demand their rights ?

MarkW (Age 50)

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

It's important to keep in mind that should there be a rogue Dr or two who treats CCSVI outside of recommended procedure with no oversight, and their patient experiences serious complications it could hinder the forward progress of CCSVI diagnosis and treatment for everyone.

I think that is where they are coming from when urging patients who are wanting treatment to do so only under certain circumstances.

Also, patients treated under IRB watch and improve, will no longer just be anecdotal evidence. This is another very important item to keep in mind when trying to understand their statements.

I'm not native English speaker and I don't understand what "blogger patient" means. Could someone please explain it to me, thanks.


Does Poland and Simka's group belong to that safe category? (I should deside in a few days weather to go there or not, and if I go, weather to take stent(s) or not. I'm confused.)

If Govt had any brain, it would come out with a policy where people who are in a progressive state are allowed to seek treatment without prejudice. Rest have to wait. But look at the system.
Govt is mute and currently it is simply free for all. Neuros are saying whatever they want.
How can someone say it is a hoax?
Has he done any research to prove his statement?
How can someone call this as a fraud unleashed intentionally by a Dr just to make money. I think Dr. Zamboni has some brain left to think that all he has earned in his lifetime will go down the drain if he does something like this?
How can someone say that the Kuwaiti Dr is doing this treatment just to stay in business for next 30 years. Look at the prejudice.

I know that MS patients brain is affected due to this disease but I did not know that Neuros were born without one ...

Hello Miia,
My understanding is that the Katowice group knows what they are doing. The difference between Zamboni and Simka would be over the use of stents.
Prof Zamboni says use ballooning (PTA) and repeat if re-stenosis occurs. Dr Simka uses stents on patients if he believes it is the best solution.
This therapy is too new to give a firm answer. The question should be discussed with Dr Simka when you are in Katowice. A key point is - can you return to Poland if re-stenosis occurs, depends on distance and money.
Good luck,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I watched this too and it was obvious that the statements made relating to safety would be the ones most reported. Zamboni and Zivadinov obviously could not say anything else in public but that whatever is done needs to be safe. But they both made a distinction between research and practice. They were reporting research (and therefore had their 'scientists' hat on) Practitioners must make decisions about specific patients' treatment. Zamboni did not say CCSVI is not proven quite the opposite. CCSVI is now on record as a vascular condition and he pointed out that this was validated by the largest authority in the world. He also said that a correlation with MS was proven: "Proved strong association with mechanism of the disease" (his words). He did not retract anything that he has said before and seemed very upbeat about the progress already made and excited about the studies currently underway. I would say the same about Zivadinov. Zamboni included Simka's results in his presentation so he clearly cannot believe that those results were from 'unethical' research. This show was obviously put on by the MS Society to try and slow down the tide of people getting the procedure done. Obviously Zamboni and Zivadinov could not decline a request to speak. Equally obviously they could not refuse to endorse safe procedures. In fact they genuinely seemed concerned that people should not take unnecessary risks. They do care. But they both left immediately after which may say something. I don't think either Zamboni or Zivadinov are any less convinced about CCSVI and it's treatment. Their body language was excellent and Zamboni was very combative (in his own quiet way) when challenged by a questioner in the audience. I really enjoyed that bit. Their basic message was that treatment should only be given as part of a study which has ethical oversight. Zivadinov said current doctors doing procedures should get IRB approval and do it under supervision. Both Zamboni and Zivadinov emphasized the difficult balance between patients needs/rights and legitimate research and they both said that we should be looking at the symptomatology of people who have had treatment and a register of people who have had the treatment was being created for that purpose. Zamboni also said that patients in extreme positions facing an aggressive form of MS could be treated on compassionate grounds. In my mind they came as near as they could to saying we know you can make your own decisions but do it carefully. That's all.

Yes, they included Simka data who does stents. They would not include the data if they had rendered Simka's work 'unethical'.