Mark Kalina, M.D.

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

Mark Kalina, M.D.

Postby PCakes » Sat Mar 13, 2010 10:36 pm

http://markkalina.blogspot.com/2010/03/ ... ening.html

California doctor with 'Liberated' MS... a bold CCSVI advocate.. states clearly that we should all be scanned!
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Advertisement

Postby hope410 » Sun Mar 14, 2010 12:49 am

I hope it works for him. Odd that in spite of being trained in evidence-based medicine, he went with a "gut" feeling and didn't fully investigate what was happening in terms of research around the world beforehand.

He may advocate that everyone be scanned but I hope that others are more pragmatic and practical than he was before rushing off for such an invasive procedure. I think we need to be sure that there is research undertaken to substantiate this approach in disease management. We need to make sure that we're on the right track in pursuing this, especially when people are making money off of us and people are taking such big risks with their health.
User avatar
hope410
Family Elder
 
Posts: 125
Joined: Mon Mar 08, 2010 4:00 pm

Postby PCakes » Sun Mar 14, 2010 1:21 am

i wondered about the 'gut feeling' comment then I remembered how my 'gut' felt first hearing the news.. all the volumes read..research reviewed and this simple idea just made sense... and the beauty of it.. it is not 'such an invasive' procedure... and with my family history was likely already in my cards... but that.. is my opinion...
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby hope410 » Sun Mar 14, 2010 1:36 am

Over all my years with MS and reading about alternative therapies, vitamins, etc. etc., what I have learned is that so many of the snake oil salesmen or others without evidence to support the product they're selling market it by seemingly making bland and vague associations between how their product affects the body and what happens in the disease process. It all begins to sound very reasonable and "makes sense". Of course 99.999999% of all the things being sold do absolutely nothing for MS.

I have learned that I prefer to rely on unbiased evidence of an ACTUAL connection between the treatment and its impact on the disease than on "gut feeling" or anything else. It's just too easy to bamboozle or confuse us with medical jargon when we're really not adequately trained to truly understand the technicalities of what's going on and assess it scientifically ourselves.

That's just how I've come to feel after many many disappointments over the years and a much lighter wallet. :roll: I just know that it's too easy to appeal to my "common sense" when I really don't have the expertise or technical capabilities to really understand what I need to in order to properly evaluate what's being presented to me.
User avatar
hope410
Family Elder
 
Posts: 125
Joined: Mon Mar 08, 2010 4:00 pm

Postby Rosegirl » Sun Mar 14, 2010 6:03 am

I am encouraged because the idea of treating MS patients for CCSVI is spreading rapidly in many countries - Italy, the US and Canada, England, Scotland, Bulgaria,Poland, India and Jordan are all participating in international studies. This will provide a broad base of data that will answer some questions and pose many more. It will also give us a broad base of patients who can be followed post-op to see what is realistic to expect from CCSVI treatment.

The MS patient population is far too big for all of us to insist on treatment right now. There just aren't enough facilities and trained doctors to handle the volume. So isn't it perfect that some will pioneer this concept and be treated early while others choose to wait for more evidence?

It's frustrating that there isn't any collection of standardized patient post-op reports. There are some postings of wonderful results, but it's hard to draw broader conclusion from them. I assume one benefit of these international studies will be a more scientific quantification of the results of treatment.

For example, will PPMS and SPMS patients benefit less because their disability was greater? Or is the location/size of the blockage(s) what determines the degree of disability?

With so many studies being done, hopefully, we will have answers sooner rather than later, and much more quickly than the years it normally takes to do a study of a new drug.
User avatar
Rosegirl
Family Elder
 
Posts: 231
Joined: Sat Jan 23, 2010 4:00 pm

Postby whyRwehere » Sun Mar 14, 2010 8:34 am

Well, the drug companies certainly convinced us with their studies, that it was in my husband's interest to take CRABs. Of course, now we know that they don't help at all, and that studies and numbers are easily manipulated. Talk about "False Hope"...they invented it.
User avatar
whyRwehere
Family Elder
 
Posts: 907
Joined: Mon Oct 03, 2005 3:00 pm

Postby Cece » Sun Mar 14, 2010 9:25 am

Rosegirl wrote:For example, will PPMS and SPMS patients benefit less because their disability was greater?


This already seems to be the case, both anecdotally and in Zamboni's endovascular treatment study. (I agree that replication is necessary.)

There is that distinction between symptoms due to CCSVI (that are gone after the CCSVI treatment) and symptoms due to neurological damage (that are still present after CCSVI treatment but, with the conditions that caused the damage now gone, now with some possibility of healing.)

CCSVI treatment cures only CCSVI. MS damage will need to heal itself (more possible in the brain than the spinal cord) or get helped along by stem cells or other neuroregenerative treatments on the horizon.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Vhoenecke » Sun Mar 14, 2010 9:28 am

Great discussions here.
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users