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Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 4:54 pm
by deirdrec
MarkW wrote:Hello Dr S,
My thought on risks of stents is that the risks are different above and below the heart (effect of gravity). Explaining this to patients may help.
Kind regards,
MarkW
I was told the same thing and was lucky enough after the second time of having ccsvi went for the third time and was lucky enough to get the jsa. I am one of the first. I was begging for the stents and the doctors steered me clear of this I am so lucky to have a team of doctors come up with this.

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 7:01 pm
by Cece
Welcome, deirdrec! We've been discussing the jugular patch angioplasty over in the vein reconstruction thread. Congrats on it working so well for you.
The other thread is here: http://www.thisisms.com/forum/chronic-c ... 18-60.html

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:11 pm
by drsclafani
magoo wrote:Thanks Cinna for relaying your experience. :)
Cece, it was 80% blocked, so it was a big problem.
How weird am I to be hoping for a stent?!
i am not sure that i would stent for 80 percent stenosis. I might not do anything.I would measure pressure and treat depending upon pressure. In one reported series, there was a 9 mm difference. I might do it if there was at least a 3 mm difference.

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:14 pm
by drsclafani
MarkW wrote:Hello Dr S,
My thought on risks of stents is that the risks are different above and below the heart (effect of gravity). Explaining this to patients may help.
Kind regards,
MarkW
You would think so mark, but i have seen a 38 caliber bullet migrate from abdomen to leg and a 38 caliber migrate from abdomen to heart

you see we often lie down and then gravity is not an issue. Also, these stents are not very heavy and blood flow and pressure is pretty high so they will go with the flow.

i think the difference is in the cause of obstruction, ie, stenosis versus compression. compression needs something to resiste the compression. stenosis can be opened by balloon most of the time

s

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:17 pm
by drsclafani
ikulo wrote:Personally I would be more comfortable recommending stents to MS patients once we have proven the efficacy of stenting as treatment of CCSVI. The debate over the risk of any treatment is only relevant when weighed against the benefits. Since we are in the infancy of treating CCSVI syndrome and outcomes do seem to vary widely, it's premature to conclude that the risk/benefit ratio is favorable for all patients. At this point, I personally think it's too soon to recommend stents to CCSVI/MS patients. My comments are aimed only toward the CCSVI/MS discussion, as I'm not familiar with nutcrack syndrome.

I chose to not do stents, and my doctor at the time said they were not doing stents for exactly those reasons I outlined above. Personally I know of some who have well over 5 stents in their jugulars with little to show in terms of improvement. Small sample size, yes, but I think it's fair to mention the flip side of this debate since many people do make decisions about treatment based on what they read here.
i agree in general that stents are not a first line option for the jugular veins and azygous vein. However if given the choice of occlusion of the vein or stenting, i would recommend stenting. That is the logic of the list of indications i mentioned on page 1 of this thread

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:20 pm
by drsclafani
Brainteaser wrote:Dr S,
Did your stenting criteria have the support of others at ISNVD?
Not all of the indications i listed were universally accepted.

in my international survey of 85 international treating physicians, the only consensus (about 80%) was for bail out procedures of complications of angioplasty. Most do not accept yet the nutcxracker association (~30%).

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:22 pm
by drsclafani
dc10 wrote:Hi Dr S,

I have had balloonm angioplasty with slight improvements which went awa after a few weeks post-angio.

in the last angio in May 11' i asked the dr to check my renal veins and after he said they were too tiny to dilate.
Do you think even tiny renal veins could be successfully dilated with stents?

by the way, i had 50-60% IJVs stenosis and 90% Azygous stenosis. Only the IJVs dilated three times, Azygous twice. But as each of the 3 procedures was performed by different IR i dont know if they dilated the same area in the Azygous.
The renal vein is one of the largest veins in the body. much larger than the jugular vein. I am skeptical of this response and wonder whether there was misunderstanding. I seriously doubt that the renal veins were tiny.

Re: Stent fears inhibit good care sometimes

Posted: Sun Feb 26, 2012 8:25 pm
by drsclafani
deirdrec wrote:
MarkW wrote:Hello Dr S,
My thought on risks of stents is that the risks are different above and below the heart (effect of gravity). Explaining this to patients may help.
Kind regards,
MarkW
I was told the same thing and was lucky enough after the second time of having ccsvi went for the third time and was lucky enough to get the jsa. I am one of the first. I was begging for the stents and the doctors steered me clear of this I am so lucky to have a team of doctors come up with this.
thank you deirdrec
you are the first patient i have had the opportunity to communicate with about this procedure. Can you tell me how long ago you were treated? When was the last time you were imaged to see the state of that vein. I assume that you have had ultrasound monitoring of the surgical angioplasty. Is that correct?

What was the impact of this treatment on your health, on your MS symptoms?

looking forward to hearing more about this.

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 5:16 am
by magoo
drsclafani wrote:
magoo wrote:Thanks Cinna for relaying your experience. :)
Cece, it was 80% blocked, so it was a big problem.
How weird am I to be hoping for a stent?!
i am not sure that i would stent for 80 percent stenosis. I might not do anything.I would measure pressure and treat depending upon pressure. In one reported series, there was a 9 mm difference. I might do it if there was at least a 3 mm difference.

Great information Dr. S. I have no obvious symptoms from this blockage, I am just concerned about this area causing flow changes throughout. I will discuss the pressure measurements at my next procedure. You are invaluable!

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 10:51 am
by Cece
Rhonda, would it help to have a work-up done for possible signs of renal vein stenosis? Urinalysis for red blood cells or protein and a blood pressure check?
(information on what's involved with a renal vein workup taken from this aging post of drsclafani's http://www.thisisms.com/forum/chronic-c ... ml#p166812 )

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 11:41 am
by magoo
Thanks Cece. I do know that before my first procedure my BP was about 80/60 for years and after my first and second treatment it jumped to a normal 110/70. But, in the last 6-7 months it has been high, around 140/90. I wonder if that would qualify?

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 12:30 pm
by deirdrec
drsclafani wrote:
deirdrec wrote:
MarkW wrote:Hello Dr S,
My thought on risks of stents is that the risks are different above and below the heart (effect of gravity). Explaining this to patients may help.
Kind regards,
MarkW
I was told the same thing and was lucky enough after the second time of having ccsvi went for the third time and was lucky enough to get the jsa. I am one of the first. I was begging for the stents and the doctors steered me clear of this I am so lucky to have a team of doctors come up with this.
thank you deirdrec
you are the first patient i have had the opportunity to communicate with about this procedure. Can you tell me how long ago you were treated? When was the last time you were imaged to see the state of that vein. I assume that you have had ultrasound monitoring of the surgical angioplasty. Is that correct?

What was the impact of this treatment on your health, on your MS symptoms?

I was treated almost 7 weeks ago. Yes i had an ultrasound just last week and all is good. doctor who came in while the scanning occurred were unsure of what treament I had recieved. They had to look it up on U-tube and I then forwarded a copy of the medical report.

Impact on symptoms were : incontinence gone, sensation back to all extremies vision and fog brain cleared up.Speech clear the list goes on and on.

looking forward to hearing more about this.

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 5:48 pm
by drsclafani
Cece wrote:Rhonda, would it help to have a work-up done for possible signs of renal vein stenosis? Urinalysis for red blood cells or protein and a blood pressure check?
(information on what's involved with a renal vein workup taken from this aging post of drsclafani's http://www.thisisms.com/forum/chronic-c ... ml#p166812 )
Speaking of aging, i become a senior citizen next week.

my, how time flies when you are having fun

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 6:15 pm
by magoo
Happy Birthday!!!!!!

Re: Stent fears inhibit good care sometimes

Posted: Mon Feb 27, 2012 6:18 pm
by Cece
I took the fact that you were getting new IVUS later this year as a sign that you weren't leaving us any time soon.
I think we've been having ridiculous fun, and you more than most, since you're on the ground figuring CCSVI out. ISNVD was too much fun and I attended via twitter and abstracts!
I am specifying the age of the post when I link to it, in case your thought process has evolved, since you are altogether entitled to evolve your thoughts on CCSVI. :)
Happy upcoming birthday!