Patients stories and the tracking sticky!

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

Patients stories and the tracking sticky!

Postby sofia » Mon Jun 21, 2010 12:23 pm

In my opinion the most important thread on here is the tracking sticky!

We can get caught up in all these studies and medical jargon, theories for and against. But when it comes to it, it is the results that really matters! How mcuh benefit will we get from the procedure.
How do we the patients react to having our veines opened. And it was the most important factor in my decition to have mine done.

Don't get me wrong, I read it all with interest, and knowledge is good, even if me personally do not understand it all. But our biggest contribution in all of this, is reporting truthfully and honestly about the effects of liberation. As my GP said "placebo is all very well, but there are limits to how much you can put down to placebo".

All in all for me it has been a great results, I have much better quality of life since I came back from Bulgaria. I don't think Bulgaria is getting enough attention for the work they are doing. Grodzinsky and Petrov are conected to uneversities, to Bulgarian national health service, and they have excellent qualification. They are conducting a large scale study with many patients, they are not just operating for money it is actualy part of a bigger research project.

I read the sticky from time to time, I update my situation and I want to encourage everybody else to keep an eye on the tracking sticky :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Perky » Mon Jun 21, 2010 12:49 pm

I personally don't find the tracking sticky very 'reader friendly'; it is a bit tiresome wading through all the info on the entries to get to the important bit (ie whether liberation was successful or not!), and often you end up reading entries which detail cases that haven't even been tested or treated yet, which seems to me a bit pointless...and then when those people are treated and go back and update their entries, there's no way of knowing they've done so without going all the way back through the entries.
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Postby Shueywho » Mon Jun 21, 2010 1:00 pm

I have to agree with Perky. I wish they weren't filled out in advance and kept more current. Just my 2 cents.
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Postby pklittle » Mon Jun 21, 2010 1:08 pm

Perky wrote:I personally don't find the tracking sticky very 'reader friendly'; it is a bit tiresome wading through all the info on the entries to get to the important bit (ie whether liberation was successful or not!), and often you end up reading entries which detail cases that haven't even been tested or treated yet, which seems to me a bit pointless...and then when those people are treated and go back and update their entries, there's no way of knowing they've done so without going all the way back through the entries.


Ditto
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Postby sofia » Mon Jun 21, 2010 3:22 pm

I agree it is not very reader friendly, but it is what we got.
The info is there, the info from all of us liberated people that are happy with the results from liberation. There is far more poitive reports, then "negative" reports.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby lucky125 » Mon Jun 21, 2010 5:01 pm

sofia wrote:I agree it is not very reader friendly, but it is what we got.
The info is there, the info from all of us liberated people that are happy with the results from liberation. There is far more poitive reports, then "negative" reports.


With all due respect, I think that self reports are inherently skewed. Not many people with poor results are rushing to the tracking thread to announce their status.
I agree that it is a bit cumbersome. I don't update in the tracking thread, but instead on my personal blog, which is listed in my signature and on my tracking entry.
I am willing, and am regularly sharing info on my (for the moment) less than stellar results, but I think that I have been in the minority. I have seen more people reporting negative stuff lately, which is really brave and important.
We're still learning, and what we have shared with each other and our doctors as a result of this site is nothing short of awesome.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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