Too Early to Promote CCSVI

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

Too Early to Promote CCSVI

Postby mohzi » Thu Dec 03, 2009 8:34 pm

I would just like to make a couple of comments.

1.) Dr. Zamboni never said this was cure. The media did. I have an email from him that says "we have just completed an experimental phase. The next step consisting in extending the diagnosis and treatment of CCSVI to patients with MS will require time."

2.) Dr. Zamboni has been very hesitant to use stents, due to the risk. It is my understanding, he has only put a stent in one person. In the trials he used Angioplasty, excluding one patient.

3.)Dr. Zamboni's clinical trial, show no help for SP and PP after six months. Most likely due to the placebo effect.

4.)Dr. Zamboni is not doing the liberation procedure now. In his papers, he repeatedly states there are many areas where more research is needed, including his own procedure.

4.) Dr. Simka, as of December 1st has only done 5 of these procedures. His email to me states, "We have performed liberation procedure in 5 patients, and other 10patients will be operated on in December."

5.) Dr. Dake has stopped doing the stents for now. They are preparing a clinical trial. There has been many ethics questions regarding stenting patients without a clinical trial here in the US.

6.) MS Clinics all over have been bombarded with people wanting their Veins checked. Only a few people in the world are trained to read the blockage and flow that they are reporting in the CCSVI trial.

7.)As much as I hate my MS and the drugs I take, I believe it is irresponsible to promote the Liberation Procedure without telling everything. And promoting it before clinical trials are done on thousands of people.

8.) I feel desperate many days also and wonder if there is every an end, but reality is reality. I read somewhere, "My Serenity is in direct proportion to my expectations." Promoting and selling CCSVI is sad and giving many people a false hope of a quick fix. Let's wait a year and see where it is, hopefully it will give new treatment methods.
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Postby ozarkcanoer » Thu Dec 03, 2009 8:40 pm

Well, mohzi, cheer's promoting CCSVI got Dr Dake involved and that is good. Cheer's promoting CCSVI led to the CTV W5 documentary and that is good, Promoting CCSVI is making the patient community and medical/scientific community aware and that is good. And the more patients who contact their doctors, that is good too. And the more patients clamoring for treatment means more vascular people will maybe watch very carefully the trials at Stanford. And more patients clamoring to be involved in trials means no worrys aboout recruiting at Stanford and Buffalo.

All good reasons for promoting CCSVI. :D :D
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Postby jay123 » Thu Dec 03, 2009 8:57 pm

3.)Dr. Zamboni's clinical trial, show no help for SP and PP after six months. Most likely due to the placebo effect.

Look at the positive, his results also show a lack of progression in SP and PP after 18 months---



5.) Dr. Dake has stopped doing the stents for now. They are preparing a clinical trial. There has been many ethics questions regarding stenting patients without a clinical trial here in the US.

Where did you get this information? I received my appt confirmation times for testing and surgery a few hours ago?

8.) I feel desperate many days also and wonder if there is every an end, but reality is reality. I read somewhere, "My Serenity is in direct proportion to my expectations." Promoting and selling CCSVI is sad and giving many people a false hope of a quick fix. Let's wait a year and see where it is, hopefully it will give new treatment methods.

But the reality is that this procedure has already helped many people, yes there will be setbacks.

I don't know why you are being so negative about everything, yes there are drawbacks and questions but some of us understand that a pioneering spirit is needed.

Of course the ones that are downplaying this the most are the neuro's and the drug company reps!
Last edited by jay123 on Thu Dec 03, 2009 9:22 pm, edited 1 time in total.
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Postby Salvatore24 » Thu Dec 03, 2009 9:04 pm

I don't think we should label this as a cure, nor be closed-minded about it.
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open minded

Postby mohzi » Thu Dec 03, 2009 9:06 pm

I am very open minded about it and excited. But have never read any of the papers, nor comments from the doctors involved that it is a cure.

Trust me, after the trial in Buffalo I will try my best to have the procedure done. I do hope it works out.
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Postby Lyon » Thu Dec 03, 2009 9:11 pm

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Last edited by Lyon on Wed Nov 23, 2011 1:38 pm, edited 1 time in total.
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Postby jay123 » Thu Dec 03, 2009 9:15 pm

Yes, but absolutely no surprise that you chimed in!
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Postby jay123 » Thu Dec 03, 2009 9:20 pm

It is right that no one is stating this is a cure, but here is something close to it in the UB writeup of their study -

"If we can prove our hypothesis, that cerebrospinal venous insufficiency is the underlying cause of MS," said Robert Zivadinov, M.D., Ph.D., UB associate professor of neurology, director of the Buffalo Neuroimaging Analysis Center (BNAC) and principal investigator on the study, "it is going to change the face of how we understand MS."
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Postby Sharon » Thu Dec 03, 2009 10:34 pm

Mohzi
you wrote
I feel desperate many days also and wonder if there is every an end, but reality is reality. I read somewhere, "My Serenity is in direct proportion to my expectations." Promoting and selling CCSVI is sad and giving many people a false hope of a quick fix. Let's wait a year and see where it is, hopefully it will give new treatment methods.

I am not sure what waiting a year is going to do. New treatment methods have to be used on patients, not the little mice. At some point in time real people have to step up to the plate. This has been true with all the drugs that have been tested in Phase 1 thru Phase 3 trials -- you have to have people!! The stenters have been excited to share their experience whether it be good or bad. I do not believe we have given false hope. Read the tracking thread - read Lew's blog, read Marie's thread, read my thread, read about Radeck, etc. etc. --- we have had problems and we have been honest about them. And, yes we also (sorry, Bob) have had improvements.

You are correct - the media has hyped this as a cure. I think all of us who have had the stent procedure have said NO, it is not a cure. Too bad the media doesn't read our anecdotal reports.

Also, you wrote
.) Dr. Dake has stopped doing the stents for now. They are preparing a clinical trial. There has been many ethics questions regarding stenting patients without a clinical trial here in the US


Stanford is open for business; those who were scheduled will get to see Dake. Yes, Dake has been writing a clinical trial for many months based on the study we "stenters" have been involved in. My hope is that he has learned from the pioneers and this knowledge will help to move his clinical trial forward and will be approved by the IRB without complications. We have known since July that Dake was going to stop taking "all comers".

The Stanford trial is really good news. I know of a possibility of another trial back East -- cannot give further information yet because it has not been announced.

Sharon
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Postby ikulo » Thu Dec 03, 2009 10:42 pm

Lyon wrote:Awesome!!

Clean up crew (Hari Krishna's) were on the job within 6 minutes and had completely quashed objectivity by accusations of being either a neurologist or pharma rep within 23 minutes.

That might be a record!


This made me spit my water out. Fantastic delivery.
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Postby jr5646 » Thu Dec 03, 2009 11:58 pm

jay123 wrote:
I received my appt confirmation times for testing and surgery a few hours ago?




Man, thats the best news I've heard all day ! Congrats, Jay !!!!!!!!!!!

If you don't mind sharing, how long did you wait? I've been waiting just alittle over a month now. What did the phone consult consist of?

I had an appt. today (complete waste of my freakin time) with my ms neuro. and presented the ccsvi case, even spent the 31.50 for the zamboni latest research paper pub. in the journal of vascular surgery... handed it to him.. the arrogant, closed minded #$%@ quickly dismissed it as old... i'd drop his ass (find a new doc) but i'm in the process of filing for ssi and don't want to muddy the waters... grrrrrrrrr Since I was quite dejected, at that point, I left it at - "well, I just wanted to keep you in the loop and hope to be heading out to CA soon"... he quickly changed the subject. I want even more to have the procedure done just to flaunt it in his face... he's a research doc at a large university too??? what the hell?

Are others getting this same kind of response from neuros?

Didn't mean to hijack the thread, but this really important to me as I'm sure it is to many others too...
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Postby prof8 » Fri Dec 04, 2009 12:21 am

Sharon wrote:I am not sure what waiting a year is going to do. New treatment methods have to be used on patients, not the little mice. At some point in time real people have to step up to the plate. This has been true with all the drugs that have been tested in Phase 1 thru Phase 3 trials -- you have to have people!!
Sharon


Not everyone has to or is capable of stepping up to the plate right away. We should respect all choices, including people who feel they want to wait a year. I see Dake next week and will get tested, but may decide to postpone surgery to see how the Buffalo study plays out and whether the stent technique can be perfected.
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Postby Algis » Fri Dec 04, 2009 1:52 am

I trust the Doctors over here. If they say they will try to understand and learn and ask me to be the test I'll do.
Equipment here is probably the best and specialists were trained in US, Japan, France... They also are very dedicated; starting with the head of the Department down to the care giver.
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Postby wonky1 » Fri Dec 04, 2009 3:35 am

Mohzi, I need to make a few points here. I have been quite uneasy lately posting such positive comments after my liberation. I am aware that the improvements that I am reporting here could just be a very powerful placebo affect. And for people who are desperate, false hope is worse than no hope at all.
I am no psychologist but I would think that the fact I am on the look out for false positives, would negate to some degree any placebo benefits.

The fact remains that I did have an inverted valve and I did have a membrane both of which stopped correct drainage.
Also if I am imagining these improvements and I really don't think I am, then I would be more than happy if only the progression has been halted.
I was not prepared to wait for further evidence to come in, I was losing my voice before and would not have been able to make the trip if any further progression had taken hold.
If I had been newly diagnosed when this came about I could have afforded myself the luxury of waiting but that was not the case and I am very glad I went for it.
:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
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Postby Lyon » Fri Dec 04, 2009 5:43 am

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