If you've had venoplasty to treat CCSVI: a survey

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

If you've had venoplasty to treat CCSVI: a survey

Postby suzq77 » Sun Jul 04, 2010 1:09 pm

If you've had the procedure done, please take a few minutes to complete this survey so we can gather some data. BUT ONLY IF YOU'VE HAD IT DONE.

Thanks for your input!

http://www.tigersurvey.com/survey.php?survey=16462

p.s. Does anyone know how to make a post a sticky?
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Postby happydance » Sun Jul 04, 2010 4:53 pm

WARNING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My computer blocks the survey site and gives a warning of a virus.
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Postby MS_HOPE » Sun Jul 04, 2010 5:32 pm

I'm new but I think I read that only a This is MS moderator/administrator can make a post a sticky.

If you hit the Feedback button on the left side menu, you may request a Sticky.

This survey is great! I can't wait to read results! Thank you!!
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This isn't spam, or a virus

Postby suzq77 » Sun Jul 04, 2010 9:39 pm

Tigersurvey.com is a free survey hosting site that I found via google to create the survey.

I had the procedure 6/18 and I wanted to get information that could be compiled in one format.

The tracking project sticky is very helpful but can be cumbersome at times because of the amount of information one has to weed through.
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Postby TMrox » Mon Jul 05, 2010 7:19 am

Who is collecting this info and what is the purpuse, research?

When and how are we going to know about the results of the survey?

I was diagnosed with CCSVI and I was treated for it but my neuro conditon is not listed in the survey:

I have Transverse Myelitis, only one lesion c3-c5.

I have do not have MS or any of the other conditons listed such as CIS.
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I'm collecting the results

Postby suzq77 » Mon Jul 05, 2010 7:30 am

I created the survey; I'm collecting the results. It's just for general info - out of curiosity. I won't be submitting it for any kind of quantitative medical research or anything like that.

I will probably give it a month or so to give people a chance to respond and then post the results here.
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Postby MS_HOPE » Mon Jul 05, 2010 8:01 am

suzq, I hope it's OK that I posted your message about the survey on the "CCSVI in MS" Facebook page. Hope that will generate more response. If you don't want it there for some reason, let me know and I'll take it down. (In retrospect, I should have asked first - I'm sorry.)

Can the survey be amended to address situations such as TMrox has brought up?

I hope you get a good response to this! People (including me) are starving for a better idea about outcomes of treatment.
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Postby Algis » Mon Jul 05, 2010 8:29 am

It is a well-thought survey; please allow me 1 remark:

Pre-procedure did you have/use any of the following adaptive equipment


'just' pre-procedure or during sickness evolution (which is pre-procedure)

ie.: Before being confined in a wheelchair I used a walker, before that a cane etc...

But I haven't got the procedure yet :P so we'll see...
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Postby suzq77 » Mon Jul 05, 2010 8:37 am

MS_HOPE - no thank you, that's great! I posted it there too, put I didn't see it.

Algis - I mean pre-procedure AND throughout the course of your disease. Thanks for your feedback! Once you've had your venoplasty, please fill it out!
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Postby TMrox » Mon Jul 05, 2010 8:49 am

thanks suzq77, for clarifying issues regarding your survey.

It will be great if you could add an option to cover cases like me Transverse Myelitis and not MS. As a matter of fact you could add 'other condition, please specify'.

According to the Buffalo study there are people with CCSVI who do not have MS, such as neurosarcoidosis, Devic's, healthy controls. I do not know if any of these cases have been treated.
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