Too Early to Promote CCSVI

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

Postby ClaireParry » Fri Dec 04, 2009 5:01 am

All I can say is I hope to God that Dr Simka doesn't for some reason stop treatment because people are making life difficult for him before I have a chance to go.

I read reports by Wonky and others and bless you all - you really keep me going.

I'm in the UK and my GP and Neuro are shi*e!

Claire
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Advertisement

Postby bestadmom » Fri Dec 04, 2009 5:15 am

Dr. Zivadinov said there will be thousands of papers on CCSVI in the coming years. As more and more researchers (not neurologists) hear about this, they will investigate. We only know of a couple of trials, but there are probably many we aren't aware of. Hopefully they will reach conclusions swiftly.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT

Postby Algis » Fri Dec 04, 2009 5:33 am

Claire: I am convinced people like Dr.Simka will never stop unless they are proven wrong.
Last edited by Algis on Fri Dec 04, 2009 5:34 am, edited 1 time in total.
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 3:00 pm
Location: XinDian, Taiwan

Postby escape_goat » Fri Dec 04, 2009 5:33 am

I've been following the forums for quite a while and have been very excited and hopeful about CCSVI, but honestly, I feel that sometimes the reaction here to those who would question CCSVI is not entirely reasonable.

It's important in any scientific process that new developments be viewed with at least some skepticism. It's the constant questioning and testing of ideas that fuels new discoveries, helps us weed out the things we take for granted. Zamboni's own skepticism is what allowed him to try something new for MS. His new ideas *should* be questioned and tested thoroughly.

There's nothing wrong with being cautiously optimistic. The hard work of people who brought (and are still bringing) these ideas to doctors and made patients aware of it has been so incredibly important. But the other side of the coin is important too ... There *need* to be people who are skeptical, who urge caution and who flat out say they don't think the theory is correct... Consideration of these points of view will help investigating doctors get to the bottom of this, and we'll *all* benefit from that.
User avatar
escape_goat
Newbie
 
Posts: 9
Joined: Tue Oct 13, 2009 2:00 pm

Postby Algis » Fri Dec 04, 2009 5:46 am

There must be contrary ideas to make the whole thing work; you are (and many others here) right and personally I carefully read each and any idea (I have not much else to do :P ).

One thing that cannot be denied from Dr.Zamboni, Simka and other is that there is proof of stenosis. Now the link between those and MS still to be tested.

I would said thousand of people have been taking drugs (ABC immuno-... and much worse) with no tangible proof whatsoever that it will change a deficient function or organ of theirs.

Those Stenosis exists - up to each of us to decide what to do with them...

My tuppence :)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 3:00 pm
Location: XinDian, Taiwan

Postby sbr487 » Fri Dec 04, 2009 5:46 am

One more important thing is that more number of countries support it, less the chances of someone trying to block. After all, one would then find it difficult to block the voice of people who are getting benefited by this procedure elsewhere outside ones country.

Remember stem cell research ... few countries had to remove the block since this was legal in lot of eastern countries and they were making good progress on this front.
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 3:00 pm
Location: India

Re: open minded

Postby Mutley » Fri Dec 04, 2009 5:48 am

mohzi wrote:But have never read any of the papers


Perhaps you could go and read Zamboni's papers then and see if you still feel the same way about your opening list of comments?
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby mohzi » Fri Dec 04, 2009 5:54 am

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.
Is actually my direct quote from a prior post.
User avatar
mohzi
Family Member
 
Posts: 37
Joined: Sat Feb 28, 2009 3:00 pm

Postby ClaireParry » Fri Dec 04, 2009 6:04 am

I'm sure you are right Algis.

I hope the bureaucratic red tape that exists here is not evident in Poland.

I'm so excited by the whole thing!!
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby Mutley » Fri Dec 04, 2009 6:19 am

mohzi wrote: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.
Is actually my direct quote from a prior post.


Forgive me, but have you read the papers or not?

If you have then I can't understand why you seem to think that people are being given false hope?
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England

Postby Sharon » Fri Dec 04, 2009 6:31 am

prof8 wrote
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.


Absolutely, we should respect all choices and that includes those of us who have had the stent procedure.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Have read the papers in detail

Postby mohzi » Fri Dec 04, 2009 6:32 am

I have read the papers of Dr. Zamboni and others regarding stenosis in detail. The ones I have read, repeatedly say more research is needed and a lot of different questions need answered.

As I said before, I would love to get the procedure done if further research on a mass scale is done. It is fortunate that a lot of research doctors are working on a lot of different issues regarding MS. CCSVI is promising, but as Dr. Zamboni has said, "it is in an experimental phase." He has said that as recently as last week.

If the trials in Buffalo with more than 1000 people hold Dr. Zamboni's theory up, trust me, I would run to get angioplasty or stents. After the procedure I would still take my meds, until research tells me not too.

I am excited about the research going on. Over the last 3 and half years I have just heard so many "cures" for MS, I refuse to get too excited until
the research is done on a mass scale.

Again, only a handful of people are trained to find the stenosis. I have a Doppler of my Jugular veins that say no stenosis. This was done three years ago. My gut feeling is the person did not have the right equipment or was not trained like the few people are that can find CCSVI. I support anyones decision to go forward with whatever they do.

Treatment decisions are a very personal choice.
User avatar
mohzi
Family Member
 
Posts: 37
Joined: Sat Feb 28, 2009 3:00 pm

Postby jr5646 » Fri Dec 04, 2009 6:34 am

prof8 wrote:
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.


If all you want is tested, why don't you just enroll in the Buffalo study and let me go to Stanford in your place :D I'll be more than happy to step up to the plate !!!!!!! I totally agree with Sharon..
jr5646
Family Elder
 
Posts: 185
Joined: Thu Nov 26, 2009 3:00 pm

Postby ClaireParry » Fri Dec 04, 2009 6:36 am

If you don't mind mohzi, where and why did you have a Doppler of your Jugular Veins??

Just interested and being nosey!!
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Postby ClaireParry » Fri Dec 04, 2009 6:38 am

p.s I have just mailed Dr Simka. I eagerly await his reply..........
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service