This Is MS Multiple Sclerosis Community: Knowledge & Support

Just a suggestion: maybe you or your friend could ask this neurologist specifics about this particular case? Where it occurred, where he heard about, etc. I think that would be better than relying on speculation here. There's been much mis-information and outright nonsense posted in this forum lately.

I agree 100%. Until symptoms, tests, procedures and outcomes over time are tracked in a consistent way and the combined results made available, we really ARE in the dark. I hope some strides are being made to do so.

Patientx,

I wished that she had gotten all of that information, too. My neuro is a tough guy to get an audience with. I will email him, but I'm not holding my breath that he will reply.

I am concerned about the mis-information, too. It was not my intention to add to it. This is my best resource for facts. I was hoping someone had details that I was not privy to.

Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

Once the registry is up and running, it might be helpful for pwMS to demand that their records be included, no mattter where they are treated. my experience with hospitals in many countries is that the patient protections are not so strong as they should be. A little sunshine can go a long way towards cleaning out the charlatans.

That said, even the best team can have an adverse event. also i don't think they have figured out the best anticoagulant therapy either. or the fleshy membrane thing in the axygous. A lot to study.

I know not every possible person is here or the CCSVI facebook page. But we do cast a wide net. How else does one get ahold of the doctor's names to get the procedure in the first place? I hate to think of this happening to any of us. Hopefully if anyone knows more they will post. Otherwise with the source being from a neuro, well, they haven't been the best of sources...so I will hope for the best there.

Dr. Sclafani has said he is not too concerned about vein rupture because these are low-flow systems (which must mean it won't do as much damage or can more easily be stopped if it did rupture?) For trauma care they can stop a bleed by inflating a balloon to block the flow...and handily there is a balloon in the system when the procedure is being done...although I'm not sure what the next step is. I am not sure how a stroke would follow, those are more a result of artery blockages not veins, aren't they? Also the higher up that this would occur, such as with a high-up jugular stenosis, the more of a concern it is. A bleed lower down, like where the jugular meets the subclavian, is a nice distance away from the brain itself.

I feel like I should start adding caveats to some of my posts: I don't really know much about all this.

The azygous clotting over and the patient worsening is a realistic and concerning possibility. We've seen so many people do well that it would seem to be a rarer complication, if it is one, but if mobility is at stake and you're the one who gets hit by the rare complication....

I think with us going for this procedure while the knowledge about it is still unfolding, we are taking an unknown degree of risk on. I am glad for all the post-procedure reports that are shared here, I think we may get a clearer picture of the benefits and risks before the researchers ever do.

Nicole,

Sorry, I didn't mean to imply you were spreading mis-information. And I know how hard it can be to contact these neurologists.

It would be interesting to hear from your neuro if this was actually a new case, or if it was a distortion of what was already known.

I only have little field experience; but already in the 80's some people received bullets or knives or shrapnels in their arteries / veins (possibly jugulars and azygous for the vein part) and still surviving Today.

Fixing that is a well known territory I guess; though it crosses the border of non-invasive to ... more or less invasive

But the fact that it did not come from the patient it supposedly happened to, or the person doing the work, but from another patient's neurologist, suggests that it is a little bit gossipy already, and has a peculiar odour to it. I would not count it for much until I heard from the principals. Sorry, but TiMS is not the same as a court of law.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

What??? A neuro gave weight to an anecdotal story that wasn't part of a double-blinded clinical trial? This is an outrage.

Lucky125, I just noticed BB Lee was in attendance at Dr Sclafani's house for the first executive meeting of the newly formed International Society for Neurovascular Disease (http://www.isnvd.org/). It is kind of strange this apparent new disconnect at Georgetown isn't it?

I just sent an email to the doctor's nurse asking for the specific details. I will let you know if I hear back from the nurse. I told her that I had little hope of asking the doc directly, so I hoped that she could help me.

1eye, I am equally as wary of information that comes from anyone other than a primary source.

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

Rockitt,

It is very interesting. Lee is basically retired at 75ish. He was not the least bit interested in seeing actual MS people back in Feb. when I had an appointment with him. He could barely hide his disdain for the time he had to waste with me.

Since then he has evidently warmed to our population as more than simply a means of getting his name on a published paper.

He has even been trying to sneak non-Georgetown patients into the queue for treatment. It is now a moot point since they have stopped all treatments there.

He is an interesting character. It has been fascinating to hear about his growing interest in CCSVI beyond just being the man who declared it a congenital condition.

We'll take all of the respected names on our team that we can get!

p.s. it doesn't matter really, but he was at the meeting electronically, not in person.

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com