CCSVI: Some Words of Caution. Wheelchair Kamikaze's new blog

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

Postby Cece » Mon Nov 22, 2010 10:27 am

magoo wrote:The warnings should be directed towards the dangers of leaving your country for treatment,

agreed
the follow-up blood thinning treatments,

agreed, although it is not completely clear what they should be
and the lack of knowledge or willing doctors to help you when you return home.

agreed

And IMO the use of stents.

CUREious said that Dr. Sclafani was a genius doctor and we'd be in good hands with him. Is he a genius except when it comes to his decision not to use stents and to let other doctors and other patients carry out that experiment? Or is that part of that genius.
Assuming these people have a huge lack of knowledge is incredibly obnoxious.

I have cogfog, it makes things harder. Others with MS, making these decisions, have cogfog too, to differing degrees. If people are going into this with the reasonable and humane assumption that they'll get follow-up care back home, then that can be a dangerous lack of knowledge. But rather I think people go into it with the assumption that the horror story won't happen to them. Yet it happens to some of us.
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Postby magoo » Mon Nov 22, 2010 1:53 pm

We all go into this hoping nothing bad will happen. I remember trying to manage my hope during the time I was treated. It is hard.
I have spoken to Dr. Sclafani and I think he has every right to his opinion about stents. Dr. Sclafani is a fine doctor, so is Dake, Siskin, Mehta, Simka, etc. Zamboni is the genius. The doctors working together to learn about CCSVI have not come to a consensus about the best form of treatment yet. I can respect all of their personal decisions, even though they are all different. None of these doctors would agree that their method is better than anyone else's. They are all learning, just like we are.
I had horrible cognitive difficulties before treatment. It was incredibly hard for me to do my research. I understand this. I am only disagreeing with the "tone" of the warnings. Respect that everyone will evaluate their own risk/reward benefits. There is a sticky with the risks and complications involved for everyone who visits this site to see.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Cece » Mon Nov 22, 2010 2:20 pm

this has been a good discussion, thanks magoo.

I am sad and and scared for others and want to do something (but what?) because we've seen tragedies and we'll see more and from what I can tell they are tragedies that could be preventable.
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Postby magoo » Mon Nov 22, 2010 2:53 pm

Everyone's heart is in the right place. The observations by all of us involved with CCSVI have merit. :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: venting.

Postby cheerleader » Mon Nov 22, 2010 4:05 pm

magoo wrote:The medical advice we should all be taking is not from bloggers or internet backseat doctors, but from the doctors we all have chosen to work with.

Amen, Rhonda.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Tue Nov 23, 2010 10:15 am

cheerleader wrote:
magoo wrote:The medical advice we should all be taking is not from bloggers or internet backseat doctors, but from the doctors we all have chosen to work with.

Amen, Rhonda.

There is the rub. We choose what treatment we get by what doctor we choose to work with. It is a hair salon after all even though it shouldn't be.

We have those choices because of how early in the process this is, and because the docs are trying out such a range of different options and, it's just a truth, some of those options are better and some are worse for us and the onus is on us to sort that out, with much at stake.

And maybe we don't make a choice at all, we just go with what's available or what we can find to be available, and we end up paying big one way or another. It's like a car crash and I don't know who of my friends here will drive away or walk away or not. It kills me when the follow-up reports come in and they're bad outcomes because we've seen life-changing outcomes for the bad as well as the good. I may not be tough enough to be here but I am here and I will feel a lot better once we get out of this phase and on to some safer, more standardized, better phase. And if Dr. Sclafani or Dr. Dake or any of them help us get to that safer phase, through RCTs or registries or standardization or greater availability of best-practices treatment options, then they have my 100% support again and again.
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