NO JUGULAR STENTS

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

Re: NO JUGULAR STENTS

Postby Robnl » Mon Sep 05, 2011 2:07 am

Yep, i'm not a doctor :mrgreen:

I did not mean to say that larger stents are better, but the opposite...my stent is small and at a place that doesn't move much (as far as i know) and it's 'protected' by the collar bone,,.i just think that that influences the 'success' of a stent.

The info is on http://www.balton.pl, the description says the Neptun is an artery stent...

another point; how long will the stent 'live'....5 years, 10 years.....that worries me a bit.. :?
User avatar
Robnl
Family Elder
 
Posts: 424
Joined: Sun Nov 08, 2009 4:00 pm

Advertisement

Re: NO JUGULAR STENTS

Postby fee001 » Mon Sep 05, 2011 2:40 am

Robni,

Lets hope that well within 5 years they come up with a cause, and then that can be addressed.

Fiona
I do my own research, and find my own answers Its good to talk
User avatar
fee001
Family Elder
 
Posts: 370
Joined: Sat Jun 25, 2011 3:00 pm
Location: Notts England

Re: NO JUGULAR STENTS

Postby Cece » Mon Sep 05, 2011 8:33 am

Robnl wrote:Yep, i'm not a doctor :mrgreen:

I did not mean to say that larger stents are better, but the opposite...my stent is small and at a place that doesn't move much (as far as i know) and it's 'protected' by the collar bone,,.i just think that that influences the 'success' of a stent.

The info is on http://www.balton.pl, the description says the Neptun is an artery stent...

another point; how long will the stent 'live'....5 years, 10 years.....that worries me a bit.. :?

Did you say the stent was 3 cm? Wouldn't that be on the large side? The average jugular is 1 cm although it varies (I have one jugular that is under 1 cm and one that is 1 1/2 cm.)

If your stent is in the jugular and near the collar bone, it is most likely at the usual spot, by the valves near where the jugular connects to the innominate vein.
Cece
Family Elder
 
Posts: 8990
Joined: Mon Jan 04, 2010 4:00 pm

Re: NO JUGULAR STENTS

Postby Robnl » Mon Sep 05, 2011 11:56 pm

Hi Cece,

It's 3CM in LENGTH, 16mm width ( there's the catch, :mrgreen: )
User avatar
Robnl
Family Elder
 
Posts: 424
Joined: Sun Nov 08, 2009 4:00 pm

Re: NO JUGULAR STENTS

Postby Cece » Tue Sep 06, 2011 9:04 am

Lol, that's more logical then!!
Cece
Family Elder
 
Posts: 8990
Joined: Mon Jan 04, 2010 4:00 pm

Re: NO JUGULAR STENTS

Postby Robnl » Wed Sep 07, 2011 3:49 am

Right, funny...thinking in different directions...ah, there is more in that sentence than only length/width :roll:
User avatar
Robnl
Family Elder
 
Posts: 424
Joined: Sun Nov 08, 2009 4:00 pm

STENTS 55% Restenose in 6mo - Tychy Poland

Postby MarkW » Thu Sep 08, 2011 8:51 am

My synopsis:
55% of cases with stents show restenosis after 6months.
33% of total cases show restenosis after 6 months.
Only small improvements seen. Predictable with high restenosis rate.

I conclude that the Tychy group is not acheiving good results from balloon venoplasty. Stenting at this centre should be avoided by pwMS.

MarkW

==================
Neuro Endocrinol Lett. 2011 Aug 5;32(4). [Epub ahead of print]
An endovascular treatment of Chronic Cerebro-Spinal Venous Insufficiency in Multiple Sclerosis patients - 6 month follow-up results.
Kostecki J, Zaniewski M, Ziaja K, Urbanek T, Kuczmik W, Krzystanek E, Ziaja D, Korzeniowski T, Majewski E, Hartel M, Swiat M, Sioma-Markowska U.
Source

Department of Surgery, Medical University of Silesia, District Specialist Hospital, Tychy, Poland. kosteckj@op.pl.
Abstract
OBJECTIVE:

In this study, the mid-term results (6 month follow-up) of the endovascular treatment in patients with Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) and multiple sclerosis (MS) were prospectively evaluated.
METHODS:

Thirty-six patients with confirmed MS and CCSVI underwent endovascular treatment by the means of the uni- or bilateral jugular vein angioplasty with optional stent placement. All the patients completed 6 month follow-up. Their MS-related disability status and quality of life were evaluated 1, 3 and 6 months postoperatively by means of the following scales: Expanded Disability Status Scale (EDSS), Multiple Sclerosis Impact Scale (MSIS -29), Epworth Sleepiness Scale (ESS), Heat Intolerance scale (HIS) and Fatigue Severity Scale (FSS). For patency and restenosis rate assessment, the control US duplex Doppler examination was used.
RESULTS:

Six months after the procedure, restenosis in post-PTA jugular veins was found in 33% of cases. Among 17 patients who underwent stent implantation into the jugular vein, restenosis or partial in-stent thrombosis was identified in 55% of the cases. At the 6 month follow-up appointment, there was no significant improvement in the EDSS or the ESS. The endovascular treatment of the CCSVI improved the quality of life according to the MSIS-29 scale but only up to 3 months after the procedure (with no differences in the 6 month follow-up assessment). Six months after the jugular vein angioplasty (with or without stent placement), a statistically significant improvement was observed only in the FSS and the HIS.
CONCLUSIONS:

The endovascular treatment in patients with MS and concomitant CCSVI did not have an influence on the patient's neurological condition; however, in the mid-term follow-up, an improvement in some quality-of-life parameters was observed.

PMID:
21876515
====================
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1142
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Re: NO JUGULAR STENTS

Postby erinc14 » Thu Sep 08, 2011 12:19 pm

too late
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 3:00 pm
Location: Montreal

Re: NO JUGULAR STENTS

Postby dania » Thu Sep 08, 2011 12:49 pm

You , me and how many others?
My stent is now pinched and bent at one end! Go figure. I must have super strong veins, in order to do that.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 3:00 pm
Location: St Lazare Quebec

Re: NO JUGULAR STENTS

Postby zap » Thu Sep 08, 2011 1:55 pm

arterial side, but interesting research on stents for stroke: http://www.medicalnewstoday.com/articles/234114.php
User avatar
zap
Family Elder
 
Posts: 326
Joined: Mon Apr 20, 2009 3:00 pm

Re:

Postby frijkaard » Tue Nov 26, 2013 1:02 pm

drsclafani wrote:
Robnl wrote:I got a Polish Neptune stent, wit large holes. The doc in Belgium told me he would never use such a stent in arteries, so i suppose this stent is more suited for veins...(but i'm no doctor :P )


I do not know this stent, so won't make judgment, but it appears that this stent was made for the bile ducts.

but just because a particular stent would not be used in an artery, DOES NOT mean that it is suitable for veins.



Dr. Scalifani or anyone else I need help immediately. I received a CCSVI treatment 3-4 years ago. It appears that there was blockage too in my left jugular vein. The blockage was cleared out but the vein kept collapsing according to the Dr. He had no choose (he said) but to place a stent in the vein. A week later , I had to take and overseas trip a week later and got violently ill and began throwing up. I thought the stent become loose and thus was the cause. So I again had a surgery to make sure it was secure and not moving. My MS symptoms over a period of time began getting worse and worse. Fast forward to today and I am almost in wheelchair. Since the surgery my balance, walking ability, eye sight, cognitive function, etc. has continued to spiral downward. I'm not sure if this is a result of having MS, the placement of the stent or as a result of an allergy to one of the components. The doctor who placed the stent told me that it cannot be removed or the process reversed. Where do I go from here as I can feel/know that my symptoms will only worsen and the downward spiral will continue. Any suggestions or thoughts? I will go where ever in the World I need to to get some answers. Thank you in advance.

Frijkaard@aol.com
..
User avatar
frijkaard
Getting to Know You...
 
Posts: 19
Joined: Wed Nov 11, 2009 4:00 pm

Re: NO JUGULAR STENTS

Postby Cece » Tue Nov 26, 2013 2:06 pm

Frijkaard, that's awful, I'm sorry to hear it's turned out this way.
If you don't get an answer from Dr. Sclafani here, ask in his thread: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-8025.html
As far as I know, a stent cannot be removed this much later but if there's stenosis within the stent, that can be ballooned to improve the flow, and there may be blockages elsewhere that were missed because the procedure was so new 3 years ago. The only way to know is to get a catheter venogram. Getting the renal vein checked and getting IVUS used are two of the things that not all IRs do, and not all IRs are equally experienced.
Good luck and keep us posted if something can be done.
Cece
Family Elder
 
Posts: 8990
Joined: Mon Jan 04, 2010 4:00 pm

Re: NO JUGULAR STENTS

Postby Robnl » Wed Nov 27, 2013 1:17 am

Hi,

You can also mail Dr. Sclafani at ccsviliberation@gmail.com, i hope he has some good advice.

Where did you get the stent, Euromedic Poland??
I was in Poland March 2010.

I'm lucky, but my stent location is a good one i suppose....

All the best,

Robert
PS. You are also from Holland, right?
User avatar
Robnl
Family Elder
 
Posts: 424
Joined: Sun Nov 08, 2009 4:00 pm

Re: NO JUGULAR STENTS

Postby frijkaard » Sat Jan 04, 2014 10:50 am

Robert,

Sorry for the late reply (I think almost two months since your reply to my post) Fortunately, Dr. Scalifani saw my post and reached out to me. Our discussions lead to me deciding to see him for a consultation. Anyway, thank you for your reply and his contact info! By the way ,given my chosen contact name I can understand the assumption that I'm Dutch or from Holland. Actually, I'm far from this supposition. I'm from California, six foot six inches tall, and I'm black. How I choose the name "Frijkaard" is a long story but I've had it almost twenty years.
User avatar
frijkaard
Getting to Know You...
 
Posts: 19
Joined: Wed Nov 11, 2009 4:00 pm

Re: NO JUGULAR STENTS

Postby Robnl » Sat Jan 04, 2014 4:15 pm

It's ok, great that dr sclafani tries to help you.

I sincerly hope he can...

Frijkaard...come on...what's the story choosing the name of great dutch soccer plager? :-D
User avatar
Robnl
Family Elder
 
Posts: 424
Joined: Sun Nov 08, 2009 4:00 pm

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users