This Is MS Multiple Sclerosis Community: Knowledge & Support

Yes, I noted as much in my analysis and agree with the logic of the position. I'd hoped that had been clear in my little post.



I would like more information on this statement. Dr. Zamboni appears to be under the impression the procedure is an angioplasty without stints. I am now reviewing the patients' statements in another thread on this forum where the posters describe their procedure and it sounds like angioplasty.

What is the difference (and I ask because I truly don't know)? Should I direct my research elsewhere?

Do you happen to have Dr Zamboni's raw data on the 60+ MS patients he did the procedure on in the last couple of years? I sure would like to review that.

Thanks for your comments.

Fletch- The difference is between "arterial" angioplasty and "venous" angioplasty. Arteries vs. veins. There really hasn't been alot of venous angioplasty done (only in really sick people with liver or kidney disease.)

The cardiac/arterial disease angioplasty and venous stenosis angioplasty are not analogous- because heart patients have a larger risk of clotting, heart attacks, etc. Venous angioplasty in MS patients typically does not have those factors. Their blood is typically not thrombotic, their hearts are healthy...it's usually a congenital malformation that has made the veins twisted or mangled or valves upside down or closed. Do you see the difference? I hope I'm being clear.
The Liberation procedure paper with data on the MS patients treated with venous angioplasty will be online tomorrow-
thanks!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

cheerleader, There is a NEW terminology we should be using. You said it. CCSVI patients get venous angioplasty, not arterial angioplasty. A whole new ball game.

So the research needs to do two things :

1. Demonstrate the correlation of CCSVI with MS with studies like the one at Buffalo; and

2. Determine safe and effective venous angioplasty and/or stenting practices in all the different presentations of venous stenosis and malformation.

Offense? No, no, not at all. You've taken time out to point out flaws in my thinking\research\understanding. You are doing me a favor. Thank you.

My name is Dennis, BTW. I'm from Calgary, Canada.



No worries, you are being perfectly clear.

I've been operating under the impression the difference between artery and vein was simply a matter of function, size and location. Arteries carry blood from the heat to other parts of the body, are heavier, thicker, normally deal with higher systolic blood pressure, etc. Veins as I understand it carry blood to the heart. The pressure is typically lowr as is the volume. Lastly, arteries have valves, veins do not. The Jugglers, for example are veins.

And there's no doubt in my mind that arterial blockages, restrictions etc., are much more critical than the same in a vein.



Thank you. I'm looking forward to it.
Dennis

_________________
<em><strong>"It may be of aetiological significance that the sites where plaques were commonly formed are areas where relative vascular insufficiency can be postulated." </strong></em><br />Brownell et. al, Oxford, 1962

Hello--I'm in Chapel Hill North Carolina and I would like to get tested for CCSVI. What should I do? Thanks

These are the steps I've been taking and any advice will be appreciated. I called my Neurologist, right after I read about CCSVI and he was skeptical. I printed the information and took it to my GP. We are discussing everything on December 10th.

I live in Florida. A person in healthcare told me, it will be difficult to find a doctor to do the procedure. Not because the doctor doesn't want to do it; the hospital's won't allow it because of liability.

I think everyone needs to email the cable news organizations. Fox News, CNN, MSNBC (although they did an article in the business section on the Internet). Also e-mail ABC, CBS and NBC. No one in the U.S., other than people with MS, know about this.

I wanted to copy and paste this text into the thread, but cannot from this format:

Abrams' angiography: Complications of Venous Stenting

Sadly, several key pages are not reproduced here, but there is plenty to chew on.

(available used on Amazon for $28.94 + $3.99 shipping if you feel like reading the missing pages!)

Cheerleader, I very much appreciate this thread, as I was just thinking about how little I've found on side effects and complications. Thank you.

... but, to you and everyone else who has had experience with this procedure directly or indirectly, could you tell us about your own experiences in regards to these negative aspects? The list seems scary, but as has been pointed out, these lists always seem so.

There is no one doing this in the UK at present. Our closest treatment centre is in Poland. If you send me a private message I will email you the information I have collected so far.

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Denis, Veins do have valves, arteries have a muscular wall which works in conjuction with the heart pumping. Here is a link to wiki which explains it really well.
http://en.wikipedia.org/wiki/Vein

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

1. Doctors told me about possible complications.
2. I had NO complications at all during, before or after the procedure.
3. I do not feel the stent, I have not had pain because of the stent.

Erika
Day 29 after the procedure in Poland.
As I inject Clexane - I do not feel any complications at all.

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Erika, Thank you - that is very encouraging!

Dovechick & Jasmine, There may be no one in the UK working on this yet, but that doesn't mean things have to stop there. I've been passing around packages of studies and reports on CCSVI to doctors, surgeons, and radiologists all over where i live. I don't know if this will work for sure, but I think I've helped in pushing some people into organizing a study here. They're the right people with the right access to the right equipment and training. They're interested. Speak to cardiovascular surgeons in your area - especially if they are noted for working with stints.

MY preference would be to deal with doctors who have been working on this for a long time, but if there's a new study starting up here... I'll jump on that!

No indeed Ariehs, I am not resting on any laurels and doing what I can to raise awareness. It may be a good idea to bypass the neurologists in the UK at the moment, but there is no reason why GPs should not be presented with some unrefutable evidence of stenosis. This evidence may shortly be obtainable in the UK and would be a start.
By the way the tubes are stents not stints, although it appears that even medical people don't recognise the difference.
See here:
http://www.wsu.edu/~brians/errors/stent.html

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

LOL - Thanks for that link, Dovechick. I won't be making that mistake again!

Hello
Does anybody have the new report from Dr Zamboni??

It was due out, a day or two ago.

Thanks