5 Simple Steps for Dealing with Trolls

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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jimmylegs
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5 Simple Steps for Dealing with Trolls

Post by jimmylegs » Mon Jun 27, 2011 1:38 pm

Step 1. DO NOT TAKE THE BAIT.
Step 2. Do NOT take the bait.
Step 3. Do. Not. Take. The. Bait.
Step 4. Do not TAKE the bait.
Step 5. Do not take the BAIT!

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MegansMom
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Post by MegansMom » Wed Jul 06, 2011 9:10 am

Can you please tell me what a troll is? And what bait?

I must be very naive but I have no idea what this thread is about. I can't be the only one.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

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maynaka
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Post by maynaka » Wed Jul 06, 2011 1:54 pm

I'm with you MegansMom, I don't follow it either.

It does sound like there is an interesting story behind it!

M [/i]

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Post by Cece » Wed Jul 06, 2011 3:49 pm

Trolls would be posters who post controversial things deliberately to get a rise out of people.

Letting them get a rise out of you would be taking the bait.

Not sure which thread this is about though!

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Post by jimmylegs » Fri Jul 22, 2011 10:44 am

there are so many...
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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japentz
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Post by japentz » Mon Aug 08, 2011 8:22 am

:D The actual term "troll" comes from the fishing term of the same name. The fisherman puts out the "bait" and then moves his line slowly through the water till a fish bites, then the fight begins and the fisherman has "got" the fish.

:) here is a video that illustrates the point. Please bear with the commercial, and content contains some profanity but the video is very relevant.

http://www.youtube.com/watch?v=FMEe7JqBgvg

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jimmylegs
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Post by jimmylegs » Mon Aug 08, 2011 1:09 pm

and here i was thinking it was those creatures that lurk under bridges.

here is a picture of me with some trolls:

Image

LOL
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jcivetta
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not a troll, i hope

Post by jcivetta » Tue Aug 09, 2011 9:34 am

i'm a 73 y o general surgeon whose wife has had ms for 30 yrs. i've been trying to learn about this procedure and whether it might help her.
i've been reading your discussions about vascular techniques. i'm amazed at your technical knowledge as well as your overall grasp of the importance of acting TODAY. the discussions remind me of how our vascular rounds sounded back in the 60s when i was a resident.all the techniques were just evolving and great surgeons' opinions were basically the only information available. the problem was that no one really knew enough about what was the problem and therefore finding a solution was pretty tough. randomized, double blinded multi-institutional studies, IRBs, evidence based medicine were all 25 yrs in the future. I see that there are registries and a number of randomized studies underway but i can't find outcomes. can you direct me please?

thank you
Joe Civetta

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Re: not a troll, i hope

Post by Cece » Tue Aug 09, 2011 10:06 am

jcivetta wrote:i'm a 73 y o general surgeon whose wife has had ms for 30 yrs. i've been trying to learn about this procedure and whether it might help her.
i've been reading your discussions about vascular techniques. i'm amazed at your technical knowledge as well as your overall grasp of the importance of acting TODAY. the discussions remind me of how our vascular rounds sounded back in the 60s when i was a resident.all the techniques were just evolving and great surgeons' opinions were basically the only information available. the problem was that no one really knew enough about what was the problem and therefore finding a solution was pretty tough. randomized, double blinded multi-institutional studies, IRBs, evidence based medicine were all 25 yrs in the future. I see that there are registries and a number of randomized studies underway but i can't find outcomes. can you direct me please?

thank you
Joe Civetta
Hello, welcome! We owe a lot of our technical knowledge to Dr. Sal Sclafani, of Brooklyn, who has maintained a q&a thread here for over a year.

The main published study on ccsvi endovascular treatment is Dr. Zamboni's from 2007. Dr. Siskin and Dr. Simka have published on the safety of endovascular treatment. Dr. Mehta and Dr. Hubbard and some others presented their preliminary findings at ISNVD this year, there were interesting abstracts, primarily showing improvements in fatigue. Dr. Dake had a publication recently on his initial patients from 2009. I don't have links handy at the moment. You might find them in the research sticky or post this as a new thread and ask. CCSVI.org has a compilation of publications too: http://www.ccsvi.org/index.php/advanced ... smaterials

And the isnvd abstracts:
http://ccsvism.xoom.it/Convegno_ISNVD.html

Dr. Sclafani will also soon be posting some of the presentations that were at the CCSVI symposium in July. Dr. Ponec's comes to mind as being of particular interest for outcomes of endovascular treatment but there were many presentation.

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Post by Cece » Tue Aug 09, 2011 10:10 am

japentz wrote::D The actual term "troll" comes from the fishing term of the same name. The fisherman puts out the "bait" and then moves his line slowly through the water till a fish bites, then the fight begins and the fisherman has "got" the fish.

:) here is a video that illustrates the point. Please bear with the commercial, and content contains some profanity but the video is very relevant.

http://www.youtube.com/watch?v=FMEe7JqBgvg
Huh! I always thought of it as trollishness, the sort that lives under a bridge. Your explanation makes a lot of sense.

Jimmylegs, very lovely pic!

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Post by jimmylegs » Tue Aug 09, 2011 12:12 pm

:D thx cece hehehe
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jcivetta
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Post by jcivetta » Tue Aug 09, 2011 12:37 pm

Cece,
thank you very much. you sent me in the right directions. I read the Consensus conference abstracts from Bologna, the vascular awareness publication and about the NIH trials going on. In the 'it's a small world category' i found that one of the investigators in the liberation study was a surgical resident at UConn, which is my institution. i'm hoping to talk to him.
Joe

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Post by Cece » Tue Aug 09, 2011 12:57 pm

It is a small world sometimes. :)

Come back and share what you think once you've had time to process everything. It was interesting, what you said about how things were in the sixties before the evidence-based model. It does seem like that's how things are currently in CCSVI but only because the research and RCTs and registries have all been slow in coming. Maybe we get the best of both worlds, because we benefit from the insights of top IRs, and we benefit from it being investigated in trials.

One of the points from Dr. Ponec's presentation stuck with me. From the patients he's treated and gathered follow-up data on, none of the expected predictors was able to predict outcome. Some have suggested that a young female with RR MS would have the best outcome and an older patient with PP MS would not. This was not seen in Dr. Ponec's research. Age, gender, type of MS, duration of MS, EDSS...none of it predicted outcome.

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Re: 5 Simple Stpes for Dealing with Trolls

Post by NHE » Tue Aug 09, 2011 10:04 pm

The Fremont Troll...

Image


:peace:

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Post by jimmylegs » Thu Aug 11, 2011 7:26 am

cave troll
Image
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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