For those with stents in jugulars...

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

For those with stents in jugulars...

Postby spiff1970 » Sun Jan 09, 2011 6:08 am

Hiya,

With all that's been reported about the risks and benefits of stents, I wonder what actually happened for those who have them placed. Let me ask you then:

1. Did you experience a relapse/progression with stents?

2. Did your jugulars restenosed even with stents?

3. Did you have a blood clot (i.e. thrombosis)?

I know of someone who experienced a restenosis even with the stent on (the stents narrowed even if it's meant to be auto-expandable).

Please, let us know how you're doing following the procedure.

thanks

Spiff
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Postby Nasti » Sun Jan 09, 2011 3:00 pm

1. yes
2. no
3. no
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Postby spiff1970 » Sun Jan 09, 2011 3:33 pm

Nasti wrote:1. yes
2. no
3. no


thanks for that. Do you have progressive MS?

spiff
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Postby CureIous » Sun Jan 09, 2011 11:38 pm

Bad news travels fast in bold headlines.

All the above have been amply reported without stents fyi, it just gets substantially less attention, but to not overstate the less than obvious and answer your question,

1 emphatic no
2 no
3 no

17 months strong. Broke up and wheelbarrowed about 500 lbs of concrete today, then mixed up and layed down new, organized the shed, then went next door and worked on the neighbors house til 9 pm, and am going in to hopefully get a job tomorrow. "So far so good" as they say, proofs in the pudding.

I only credit the stents with keeping my veins open, the improved blood flow it seems would be responsible for the rest ie improvements, just to be clear.

There is no sure path in this, choose your steps carefully with much consideration and thought, and remember, YOU are the one who lives with the consequences, not any of us, or websites, or blogs. Take every source with a grain of salt, including me.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Nasti » Mon Jan 10, 2011 4:01 am

no, I have RRMS, for 10 years now, am quite OK unless I'm in a relapse, had a liberation procedure in june (6 cm stent in right jug, ballooning of the left jug and azygos), relapsed in Nov, veins wide wide open :) I suggest you also read the posts of people who had relapses after the treatment
P.s. one clear benefit though - I am not tired anymore
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Postby CRHInv » Mon Jan 10, 2011 7:05 am

1. no
2. no
3. no
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Mon Jan 10, 2011 8:09 am

1. NO
2. NO
3. NO
Doing quite well 15 months later!
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 spiff1970 » Tue Jan 11, 2011 9:06 am

Thanks for the replies, so far. I've had one stent placed in my LIJ and did angio in my RIJ. It did not work for me as I suspect the RIJ has restenosed. My doc thinks that I should have one stent in my RIJ as well but I am cautious about it cause there has been stories of thrombosis and even restenosis in veins with stents. Therefore, it is important to have feedback from people who've had stents for a while and to know the outcomes.

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Postby Nasti » Tue Jan 11, 2011 1:14 pm

I also suspected restenosis, but there was none. It is important to check this out.
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Postby bettyboop » Tue Jan 11, 2011 2:08 pm

spiff1970 wrote:Thanks for the replies, so far. I've had one stent placed in my LIJ and did angio in my RIJ. It did not work for me as I suspect the RIJ has restenosed. My doc thinks that I should have one stent in my RIJ as well but I am cautious about it cause there has been stories of thrombosis and even restenosis in veins with stents. Therefore, it is important to have feedback from people who've had stents for a while and to know the outcomes.

Spiff

If your doctor think you should have one stent in your's RIJ than put it in! I am wondering why he didn't placed it during the first procedure. Maybe he couldn't not find stenoses? Or he was short on stents?
BB.
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Postby spiff1970 » Tue Jan 11, 2011 3:08 pm

BettyBoop wrote:
spiff1970 wrote:Thanks for the replies, so far. I've had one stent placed in my LIJ and did angio in my RIJ. It did not work for me as I suspect the RIJ has restenosed. My doc thinks that I should have one stent in my RIJ as well but I am cautious about it cause there has been stories of thrombosis and even restenosis in veins with stents. Therefore, it is important to have feedback from people who've had stents for a while and to know the outcomes.

Spiff

If your doctor think you should have one stent in your's RIJ than put it in! I am wondering why he didn't placed it during the first procedure. Maybe he couldn't not find stenoses? Or he was short on stents?
BB.


He didn't put in both sides in first place because he was being cautious then. This was in July and he was doing the first procedures. He wanted to check what would happen with both jugulars one being stented and the other just ballooned. He said it then that he thought the ballooned one would restenosed. I will do an MRI soon to check whether this was the case. Now he's treating all patients with stents in both jugulars. I trust him but it is not a consensual matter as you can check with Dr. Sclafani posts. Stents cause some risks and once they're place they cannot be removed. If they work that's great but what if they clot or restenose?

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Postby CD » Wed Jan 12, 2011 12:57 am

Lots of good information at this site.
A clot buster Catheter ~ Mesh stents all kinds ~ Dissolving ones coming soon. Stents dissolve in 90 days.

http://www.ev3.net/peripheral/us/thrombus-management/

Blood Clot Therapy

Blood clot therapy products include flexible catheters with small holes that can allow for the delivery of drugs to help dissolve or break up a clot. Referred to as infusion catheters, this form of treatment relies on various pharmacologic agents to restore blood flow rather than physically removing or compressing the clot.

http://www.ev3.net/peripheral/us/blood-clot-therapy/


.
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Postby Nasti » Wed Jan 12, 2011 8:42 am

Good call. Well spent money. Even if the results are short-lived, using it every day or at your convenience is good. I already spent 25k roughly for the CCSVI so far, and again with relapses now. Maybe it is better to invest in something like that.
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re- stents used in ccsvi treatment

Postby tiredloulou » Wed Jan 12, 2011 3:11 pm

no
no
no

just had dopler ultra sound, 3 month check up
all is good so far..........

improvements definitely..............
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Postby Rokkit » Wed Jan 12, 2011 3:35 pm

yes (improvements and progression)
no
no
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