okay this next publication is about us!! Siskin et al, JVIR

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

okay this next publication is about us!! Siskin et al, JVIR

Postby Cece » Fri Mar 11, 2011 1:47 pm

Journal of Vascular and Interventional Radiology
Volume 22, Issue 3, Supplement , Page S110, March 2011
.Abstract No. 257:

The impact of internet-based social networking on the evolution of endovascular treatment for multiple sclerosis (MS) patients with chronic cerebrospinal venous insufficiency (CCSVI)

G. Siskin*, S. Garla, L. Ginsburg, K. Mandato, M. Englander, A. Herr

Learning Objectives
1) To review the common social networking sites used by MS patients to convey information and discussions about the role of endovascular treatment for CCSVI. These websites, as well as their methodology for participation, will be reviewed. 2) To review the advantages and disadvantages of physician participation on these websites. 3) To review the potential use of these websites in practice development and patient communication.
Background
CCSVI is a recently described venous abnormality that appears to be present in patients with MS and may be a cause for the some of their symptoms. Early data demonstrates symptomatic improvement in patients undergoing endovascular treatment for CCSVI. While most new procedures go through a rigorous process of research and investigation before being applied to the mainstream population, these procedure appear to have been rapidly accepted by the MS patient community and is now being performed by many physicians around the world. This is largely attributed to patient demand fueled by the information conveyed by social networking websites. Since this is where almost all patients are receiving their information about CCSVI and venous angioplasty, it is critical for all health care professionals involved in the care of these patients to be familiar with these social networking sites.

Clinical Findings/Procedure Details
Existing social networking websites (eg, Facebook, Twitter, etc.), as well as sites dedicated to MS and CCSVI (eg, thisisms.com, ccsvialliance.org, etc.) have been instrumental in allowing patients with MS to share information about this procedure. These sites, together with the internet-based access that physicians now have with both existing and potential patients, have ushered in an era of communication that has driven a new procedure into the repertoire of a growing number of interventional radiologists.

Conclusion and/or Teaching Points
Social networking websites on the internet have been critical in rapidly advancing the role of venous angioplasty in the treatment of CCSVI in MS patients. Understanding these websites and the role they are playing in increasing the demand for this service is important for phsyicians providing this service.

So what are the advantages and disadvantages of physician participation here?

I can think of patient education and the joy of getting to know our good doctors as advantages. Disadvantages?
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Postby 1eye » Fri Mar 11, 2011 4:51 pm

Disadvantages?


Well I might've said it used up too much of their time and energy to be the required attentive surgeons, but I think they have done rather well, don't you? Far from burning a candle at both ends, they have enough light to fix folks, and share with us still... :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby HappyPoet » Fri Mar 11, 2011 5:54 pm

Our own Dr. Sclafani here at TIMS deserves a very special mention and credit for being the first doctor to participate interactively in an online CCSVI forum -- he changed forever the way patients and doctors communicate.

For those who missed the grand occasion, Dr. S's drsclafani answers questions thread just passed HALF A MILLION HITS.

Thank you, Dr. S -- you rock!
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ccsvi

Postby blossom » Fri Mar 11, 2011 11:12 pm

remarkable, especially when you figure that we on tims are really the minority of the total ms patients worldwide that actually have a clue about ccsvi and actually have an idea about what has been going on to this point.

why do i figure this. because for instance as today went- i went to see my chiropractor"who i took dr. flanagan's book to read a while back and his view of ccsvi-ccvbp and he and i discuss this" also he knows that i had the procedure done and he knows how much dr. sclafani has contributed not only in treating but in taking the time to talk with all of us. his wife is a neurologist who totally does not believe at all in ccsvi or chiro.and she works in a big hosp. about 35 mi. south of me in w.va. and that is their stand there.

then i go to my pcp to get an mri prescription that i want to have my chiro. look at because i have very bad stenosis and bone spurs in my neck amongst other things that could very well be contributing to some of my symptoms. and, it's too long to explain here right now, but i know for sure these problems do effect my blood flow. --ok, my pcp also knows i had the ccsvi treatment and so far has been ordering follow up dopplers. he totally "does not believe" in ccsvi and he sure isn't that crazy about chiro.'s either but i basically feel he's a good man and a good doctor and he is let's say tolerating my actions. also, i got from him that the vasc. dr.'s and other doctors in town feel ccsvi is a wash.

now here's the clencher. my brother and i go to a little diner we like and the waitress sees me in the wheelchair and as talk goes she says "tomorrow she's participating in the ms walk" i said oh do you have someone with ms -which she did. of course i asked her if she was familiar with ccsvi or if any of the group at the organizers had been discussing it. of course the answer was "no". so, i got some names and guess who is gonna be getting a call.

i have told as many as i can and it amazes me that none of the ones with ms have ever heard of tims or ccsvi.

so the moral of the story is----------------------------------------------------

first the chiro.--they are more broadminded and i feel he may tell someone about ccsvi and tims and even dr. sclafani.

second--my pcp--he's not gonna suggest ccsvi or mention it to other ms patients--he doesn't believe in it. let alone tell them about tims.

third--the group of ms walkers and most of the ones with ms they are walking for--doubt that many if any of them are here on tims. and our town has a lot of people with ms.

so, overall, with by what i see in my surroundings, i feel that this follows elsewhere.

SO, YES, REMARKABLE THAT "DR. SCLAFANI'S" SITE HIT THE 500,000
+ MARK!!!!!!!!!
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Re: ccsvi

Postby HappyPoet » Sat Mar 12, 2011 10:48 am

happypoet wrote:For those who missed the grand occasion, Dr. S's drsclafani answers questions thread just passed HALF A MILLION HITS.

blossom wrote:remarkable, especially when you figure that we on tims are really the minority of the total ms patients worldwide that actually have a clue about ccsvi and actually have an idea about what has been going on to this point.

I can't wait to see what happens when word really gets out about TIMS and Dr. S's thread.
:)
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Postby Cece » Sat Mar 12, 2011 11:54 am

I would like it if every person with MS knew about CCSVI, so they could decide for themselves! What resources we have now, that weren't there in January 2010 when I first learned of CCSVI. Dr. Sclafani's thread or Joan's CCSVI Alliance website are great places for people new to CCSVI to start.

Dr. Sclafani once said...I am trying to remember...it was that he had heard so many times from other doctors that they could not believe that he was doing what he was doing here, and that this was often positive but sometimes negative. (Apologies if I am remembering this wrong, it was along these lines.) There was also some talk early on about not commenting directly on a patient's MRI because of medicolegal risk. Getting sued would be a definite disadvantage.... There is such an increase in transparency too, which might not be comfortable.

On the advantage side, which is more pleasant to discuss, there is the reward of instant feedback from us as well as the challenge of the many many different questions and situations that are presented when the pool is every CCSVI patient, everywhere. There is the pooling of knowledge of every different doctor's varying techniques. Someone is using a valvulotome? Someone is doing hard compression on the femoral vein for over an hour? We are discussing it here. Sometimes we bring information to Dr. Sclafani or Dr. Cumming that they did not already have.
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