How are the stents holding up?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
VTgal
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How are the stents holding up?

Post by VTgal » Mon Dec 07, 2015 9:38 pm

Long time lurker, first time poster. I’ve been wondering how some of the people here who received stents some time ago have been doing? I remember reading about complications in some including Jeff Beal, Marie Rhodes, SammyJo, but can't find those posts right now and don't remember the nature of their issues. Did stents break? Did endothelium overgrow inside? Did they have thromboses? How are others’ stents holding up? My PCP says they only last a few years in arteries before they break. Is the prognosis better in veins? Thanks!

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cheerleader
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Re: How are the stents holding up?

Post by cheerleader » Tue Dec 08, 2015 7:25 am

Jeff's are fine---he had a tiny bit of intimal hyperplasia in the first 6 months, and was retreated. All good since then. We really don't know as much about venous stents as we do arterial---since they are in a low flow environment, with less internal/external force than arteries. http://evtoday.com/2014/07/the-unanswer ... -stenting/

But he is happy, now 6 1/2 years past treatment, with a recent MRI showing remyelination of his cervical lesion, reversal of gray matter atrophy, no MS progression--still jogging, working full days. Hoping the benefits to his new vascularly healthy lifestyle remain. I still post on here, so will keep folks updated.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

VTgal
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Re: How are the stents holding up?

Post by VTgal » Tue Dec 08, 2015 8:10 am

That's great to hear! I must be misremembering what was said earlier about Jeff, thought one of his veins had closed off...

Do you know anything about complications in others?

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Robnl
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Re: How are the stents holding up?

Post by Robnl » Tue Dec 08, 2015 9:30 am

I have a small stent, ok since 5 1/2 years...

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NHE
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Re: How are the stents holding up?

Post by NHE » Wed Dec 09, 2015 2:06 am

VTgal wrote:Do you know anything about complications in others?
See the following thread...

http://www.thisisms.com/forum/chronic-c ... 12342.html

...and also this one about a jugular vein bypass surgery after two failed angioplasties. Sadly, the bypass failed.

http://www.thisisms.com/forum/chronic-c ... 19420.html

There's also member mrhodes40, two stents, one blocked and one flowing.

http://www.thisisms.com/forum/regimens- ... ml#p117313

VTgal
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Re: How are the stents holding up?

Post by VTgal » Wed Dec 09, 2015 8:59 am

Thank you, NHE. Can I ask for two clarifications?

Mrhodes' post sounds like it was not the stent itself that closed off, but that the vein as a whole just has low flow (didn't close off either). Do you agree?

Also, the patient who had bypass surgery, did she have stents in the beginning and did the stents occlude/fracture? I didn't see that information in her post.

What about all the other Stanford/Poland patients? Are they all OK, at least as far as their stents are concerned? SammyJo, Loobie, others? I looked at the thread you posted where patients reported if they had negative experiences. I got the impression that if things go wrong (such as thrombosis, tissue overgrowth), it happens mostly in the first months after the procedure, but didn't see reports of things going wrong after years (according to my PCP one should be concerned about clotting mostly in the first months, but about fractures only after several years).

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NHE
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Re: How are the stents holding up?

Post by NHE » Thu Dec 10, 2015 2:45 am

VTgal wrote:Mrhodes' post sounds like it was not the stent itself that closed off, but that the vein as a whole just has low flow (didn't close off either). Do you agree?
You would have to read more of mrhodes40's posts to answer that question. I don't remember the specifics at this time. To get a complete list of a member's posts, click on their profile button and then click on "Search user’s posts" under "User statistics."
Also, the patient who had bypass surgery, did she have stents in the beginning and did the stents occlude/fracture? I didn't see that information in her post.

What about all the other Stanford/Poland patients? Are they all OK, at least as far as their stents are concerned? SammyJo, Loobie, others?
You'll have to read their posts. I don't remember the specifics of every case. I do recall that it seemed that nearly everyone who reported going to Poland and was treated by Dr. Simka got stents. This may have been excessive and unnecessary. In addition, big balloons were also thought to be the best way to go, but this later turned out to not be the case. Excessively large balloons damage the vein and increase the risk for clotting. Moreover, the size of the vein cannot be accurately determined by venography using x-ray fluoroscopy. Dr. Sclafani has shown that intravascular ultrasound (IVUS) could better determine the problems with the veins and also be used to accurately size the balloon to the vein to help minimize the risks of clot promoting injuries. You may want to read through the case studies he has posted which are indexed in the following post. http://www.thisisms.com/forum/chronic-c ... 23360.html

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Re: How are the stents holding up?

Post by cheerleader » Thu Dec 10, 2015 12:19 pm

I'm on Facebook and see in person many of the Stanford people, as well as others treated with stents by Haskell and Siskin-- now 5- 6 years out from treatment--no reports of fractured or occluded stents from them. Have not heard of that happening. There is certainly no guarantee in anything, if that is what you're looking for, VT. Trying to respect others' privacy, too...since not everyone has been as public with their experiences.

Stenting for venous/transverse/dural sinus stenosis in IHH is becoming more common now ---and longer term follow-up is showing good durability of stents and safety in this treatment.
http://www.hindawi.com/journals/tswj/2015/140408/
http://www.ajnr.org/content/32/8/1408.full

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Donnchadh
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Re: How are the stents holding up?

Post by Donnchadh » Tue Dec 29, 2015 10:27 am

My stent in the right internal jugular vein implanted July 2015 is widely patent. Just had an ultrasound and the blood is draining nicely.

The left side is still untreated; ran into medical dogma stating "you only need one vein open" to survive.

Meanwhile my symptoms are getting worse.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Robnl
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Re: How are the stents holding up?

Post by Robnl » Mon Jan 04, 2016 11:19 pm

Frustrating, isnt it??

Pfff, you also need only one finger to tickle your nose.......

Pay attention docs..... :twisted:

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Donnchadh
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Re: How are the stents holding up?

Post by Donnchadh » Tue Jan 05, 2016 10:14 am

Some great news!

A neurosurgeon who has done some vital procedures on me before, has agreed to do a procedure on the left internal jugular vein stenosis. It's going to be difficult because where the stenosis is located; at the skull base.

"If I can open it up, and IF I can put a stent in, I will."

Trying to get this scheduled within a month or so. Have to do all the pre-op tests and doctor clearances first.

I think there were two reasons why he agreed to do this procedure. First, other procedures have resulted in permanent symptom improvements which supports the venous insufficiency thesis.
Second, the existing stent in the other vein [implanted in July 2014] is doing fine with no issues.

This is the last, remaining problem to be dealt with.

I have complete confidence in his professional skills; I just have to hope that it is technically feasible.

This is my last chance for a cure from CCSVI.

I can't release his name just yet. This ls like a bad memory of the early 2010 days when venoplasty was done "underground" by pioneering doctors.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Robnl
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Re: How are the stents holding up?

Post by Robnl » Tue Jan 05, 2016 11:10 pm

Go for it!

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Re: How are the stents holding up?

Post by 1eye » Sun Jan 10, 2016 5:15 am

Robnl wrote:Go for it!
I agree. I have 2 arterial stents in my chest. I think if they are placed in a protective bony structure like the brain (with its CSF for shock-absorption) or the chest, they are reasonably safe. Of course they can get plugged up and you are then back to square 1.
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Re: How are the stents holding up?

Post by CureIous » Tue Jan 12, 2016 8:45 pm

Keep an eye out when I update my progress thread. Will have an update that's definitely out there.

6 years later, wouldn't change a thing. PCP's go off numbers, odds, failure rates blah blah, especially when dealing with something like this. They honestly don't know how to form a response because they have no experience dealing with it , and by "it" I mean this particular application of stents in jugular veins in MS patients. There were many comparisons and conjectures and plain old guesswork at the start, using arterial stents data, cause frankly there's just not a whole pile of funding awaiting venous stenting research. Hearts, arteries, that's where the $$ is. Monthly MS patients are a lifetimes worth of golfing green fees. Why upset the apple cart?

There is plenty of stuff to research on this if your PCP is truly interested, I personally find that many (not all) Dr's are just too damned stuck on medical school textbooks and prefer to leave the out of the box people over >>> there. My local Dr. did his own homework on this and came up with a treatment even more novel. I'm going to see him tomorrow, he's very anxious to ultrasound my veins due to what happened today.

Hopefully, someday soon, we'll get these dissolvable stents in use.

As for me, even with the latest hiccup, wouldn't change a damned thing. Last 6 years have been incredible.
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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Donnchadh
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Re: How are the stents holding up?

Post by Donnchadh » Thu Jan 14, 2016 1:51 pm

Got a call from my neurosurgeon's office about the procedure; it's scheduled for 29 February.

Leap Day; hope it's a lucky day for me.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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