Last year's word

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

Last year's word

Postby MarkW » Sun Mar 20, 2011 9:03 am

I am pleased you are happy but two points:
- VENOPLASTY is the 2011 word for the procedure, not the L word.
- MS is a variable disease so please report trends over 6 months not day to day changes.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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Re: Last Year's Word

Postby bretzke » Sun Mar 20, 2011 11:49 am

MarkW wrote:I am pleased you are happy Ethan but two points:
- VENOPLASTY is the 2011 word for the procedure, not the L word.
- MS is a variable disease so please report trends over 6 months not day to day changes.

MarkW


Mark-

I don't care if a patient who has had their veins rotorootered calls it Liberation or venoplasty. Don't care if they call it an operation or "procedure". I really enjoy reading short term reports on progress or setbacks.

Why are you offering this advice?
Brian
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Argument with neuros/naysayers

Postby MarkW » Sun Mar 20, 2011 3:13 pm

The reason I give this advice is to assist with the argument with neuros and naysayers. Using the correct terminology is important, neuros use the words we use against us. Its very difficult for neuros to argue against trends in symptoms over months. Very easy to laugh at daily diaries for a RRMS patient.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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daily updates

Postby zinamaria » Sun Mar 20, 2011 5:55 pm

This site is for pwMS, not neuros. Personally, I enjoy hearing of any improvement, daily or otherwise. We are not just science experiments we are people struggling with this awful disease. So, I feel it it helps someone to come on a thread to share the ups and downs, post Venoplasty, then we ought not to put rules around that process. Let the scientists do that when they start collecting data.
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Postby Cece » Sun Mar 20, 2011 6:01 pm

Before my procedure, I was uncomfortable with the word liberation, I thought it was too loaded.

After my procedure, however, I warmed considerably to the word. :)

I agree with Zinamaria, the neuros aren't the ones reading here.

Ethan, congrats on the procedure and the no pain, no problems. Hope you are feeling well!
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Public Site

Postby MarkW » Mon Mar 21, 2011 6:14 am

I am well aware that this site originated for pwMS. However I am aware that neuros browse this site. Some because they are curious, others to collect information against venoplasty for CCSVI. Some people have posted about big pharma plotting against venoplasty for CCSVI but I feel that neuros have more to loose. (Big pharma will collect data showing that CCSVI plus an oral immune regulator or long duration Mabs are the best options for pwMS. Guess what, that protects their investments and is my free consulting hint to big pharma).

Using the L word does not impact me as I simply pay for what I want to do on CCSVI. Arguing for 'venoplasty for CCSVI' is my mojo. Why ? Simply to help people with MS with are not as financially free as I am. Giving interviews and writing in the quality UK press does little for me but I do it to help get venoplasty for CCSVI talked about by politicians. We may eventually get venoplasty available on our NHS (public health system).

Please do not under estimate the power of this chat room or the excellent work that the CCSVI Alliance is doing.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
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Postby soapdiva884 » Mon Mar 21, 2011 6:55 am

I for one am glad that John was liberated with venoplasty!

I also believe that day to day reports are extremely important to all of us including the physicians and medical professional who browse this site.

We will continue to do day to day reports versus trends over 6 months!

But, thanks for the advice! LOL

PS-------"Very easy to laugh at daily diaries for a RRMS patient"---I DO NOT BELIEVE ANYONE IS LAUGHING AT DAILY REPORTS!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby MS_HOPE » Mon Mar 21, 2011 8:18 am

MarkW, I see your point, as well as the others'. How about a thread specifically dedicated to long-term changes (or lack thereof) after venoplasty?

Any neurologists reading would be well-served, in my opinion, by taking a look at the data being collected on www.ccsvi-tracking.com. Not without its shortcomings, it's the best source I know of for an overall picture of how CCSVI treatment is affecting MS patients' lives.

Anyone know of a better source of this type of info, while we wait for the studies to be published?
CCSVI:  Making Sense of MS
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CCSVI-Tracking.com

Postby fiddler » Mon Mar 21, 2011 9:38 am

Compared to any other site (including this one), http://www.ccsvi-tracking.com has by far the best aggregated data (presented as user-defined aggregate and time-line graphs) on the impacts of "CCSVI treatments for patients experiencing multiple sclerosis symptoms" - or liberation treatments, for short. If neuros who really care (and aren't just looking for negative sound bites or out-of-context quotes) want more information, they should go there. Yes, it's self-reported data, but there is no other large longitudinal database even close to being developed yet, so it's as good as we can get. Hats off to the wonderful volunteers who have put that site together for all of us. And if you've been liberated (treated, whatever) and haven't entered YOUR data in yet, what's stopping you?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby orion98665 » Tue Mar 22, 2011 1:06 pm

On CCSVI Tracking am i reading this correctly..? It appears that over about
the 9th 10th month out post procedure improvements are going in the wrong direction. :(


http://www.ccsvi-tracking.com./index_timeline.php
Last edited by orion98665 on Tue Mar 22, 2011 3:31 pm, edited 1 time in total.
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Re: Last year's word

Postby drsclafani » Tue Mar 22, 2011 1:37 pm

MarkW wrote:I am pleased you are happy but two points:
- VENOPLASTY is the 2011 word for the procedure, not the L word.
- MS is a variable disease so please report trends over 6 months not day to day changes.

MarkW


actually mark, i would argue that VALVULOPLASTY is the correct word for the vast majority of these procedures. That is what is wrong.

But its semantics. What counts is how the patient feels.
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9th or 10th month

Postby fiddler » Tue Mar 22, 2011 2:31 pm

Orion, the numbers do seems to show a slide back for people in the 10th month (they were the same in their 9th month last month), but it's hard to say whether this is the actual case for most people, or is an artifact of the small numbers that have reached and are reporting 10 months of results? Note that people in the 11th month (an even smaller number) seem to report better results than those in the 10 month group (remember to check your graph settings and set the min number of treated people to 3, as there are only 4 people 11 months along). Also, some of those people in the 10 month out group may be people who've restenosed. In my case, I am post 10 months (the only Canadian reporting that far along) and I'm feeling fine.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby CCSVIhusband » Tue Mar 22, 2011 3:09 pm

Good for you Ted, been a while since we've heard from you ... still blogging?
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Still blogging...

Postby fiddler » Tue Mar 22, 2011 3:20 pm

Yup, still blogging... I try to keep up with what's going on during these exciting times and pass them on when I have the chance. Also am giving a hand to a local liberated fellow who's going on a cross-country tour to promote CCSVI treatment in Canada. He's getting great support from individuals and businesses. We shall overcome...
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: 9th or 10th month

Postby orion98665 » Tue Mar 22, 2011 3:38 pm

orion98665 wrote:On CCSVI Tracking am i reading this correctly..? It appears that over about
the 9th 10th month out post procedure improvements are going in the wrong direction. :(


http://www.ccsvi-tracking.com./index_timeline.php


fiddler wrote: In my case, I am post 10 months (the only Canadian reporting that far along) and I'm feeling fine.
...Ted



"Great to hear!" I think all of us want to see this CCSVI "Steam Locomotive"
pick up momentum and continue to move forward!!!

Bob
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