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.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
Stent fears inhibit good care sometimes
Re: Stent fears inhibit good care sometimes
Re: Stent fears inhibit good care sometimes
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
The other thread is here: http://www.thisisms.com/forum/chronic-c ... 18-60.html
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Re: Stent fears inhibit good care sometimes
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.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?!
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Patient contact: ccsviliberation@gmail.com
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Re: Stent fears inhibit good care sometimes
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 heartMarkW 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 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
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Re: Stent fears inhibit good care sometimes
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 threadikulo 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.
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Re: Stent fears inhibit good care sometimes
Not all of the indications i listed were universally accepted.Brainteaser wrote:Dr S,
Did your stenting criteria have the support of others at ISNVD?
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%).
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Re: Stent fears inhibit good care sometimes
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.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.
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Re: Stent fears inhibit good care sometimes
thank you deirdrecdeirdrec wrote: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.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 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.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
Patient contact: ccsviliberation@gmail.com
Re: Stent fears inhibit good care sometimes
drsclafani wrote: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.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?!
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!
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.
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.
Re: Stent fears inhibit good care sometimes
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 )
(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
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?
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.
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.
Re: Stent fears inhibit good care sometimes
drsclafani wrote:thank you deirdrecdeirdrec wrote: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.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 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.
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Re: Stent fears inhibit good care sometimes
Speaking of aging, i become a senior citizen next week.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 )
my, how time flies when you are having fun
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
Patient contact: ccsviliberation@gmail.com
Re: Stent fears inhibit good care sometimes
Happy Birthday!!!!!!
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.
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.
Re: Stent fears inhibit good care sometimes
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!
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!
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