DrSclafani answers some questions

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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani »

Dmamzy wrote:I have a question and I hope you will be able to help me.
In 2010 and 2011 I've had jugular angioplasty of my both jugular veins and the azygos vein, and now, again, I have restenosis on all of them. The angiography finding from 2011 is that the right jugular vein is 60% clogged, the left jugular vein is 80% clogged, and the azygos vein is 70% clogged.
The indication was stenosis of both jugular veins, discovered with Doppler (TCD). I've had CCSVI treatment. Please, don't throw away this message after you read this. I've been working as a vascular nurse for 20 years now, and I am familiar with the circulation of arteries and veins. Unfortunately, I have this disease, and I'm sure, from my experience, that everything is connected to the bad vein circulation and anatomical malformations.

Now I am suggested to implant a stent, but as much as I am informed, there aren't any stents for jugular veins right now.

In summary, my question is are there any researches at your clinic regarding jugular veins, or stents for jugular veins? Do you perform stent implantations for jugular veins at your clinic?
Firstly, restenosis is often caused by underdilation of the venous valvular stenosis. Secondly, it sound like you got more than one year from the last treatment. Why stent if you are doing better and more durable. I do not recommend stents unless restenosis occurs twice within 12 months, or the stenting is to bail out a problem like dissection of the vein or recanalization of an occlusion.

there will not be a specific FDA stent for many years. Just because an FDA sponsored trial has not been done, does not mean that the current devices are not satisfactory. it may just mean that a manufacturer does not want to invest the money in a research project for a new indication for the instrument. You know, there are no angioplasty catheters that have been approved by FDA for angioplasty of the jugular veins either.

i perform stenting in my clinic but i confine it to very specific indications and you do not describe one

DrS
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Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Post by ljelome »

Dear dr. Sclafani,

If you believe in God, then there's nothing called a coincidence. At first, I really didn't know how to contact u, i didn't know what to ask u. But then u are the first one who contacted me.

Dr. Priyo had told me a lot of your works and he admires u for that. He's going to do the catheter venography on me, because the other tools (CT Venography n Doppler USG) had failed to show if i have CCSVI, though the Doppler USG indicates there's a possibility of abnormalities in my jugular. But he now convinces me to do the venography, after seeing my symptoms very similar to those with CCSVI. If we succeed, then my case could be an example for another pwMS-ers here in Indonesia.

Dr. Sclafani, i hope u will carry on doing whatever u're good at and never stop learning about new things. Coz what u do could help a lot of people and can save many lives.

Thank u and God bless u....
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
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Re: DrSclafani answers some questions

Post by Dmamzy »

drsclafani wrote:
Dmamzy wrote:I have a question and I hope you will be able to help me.
In 2010 and 2011 I've had jugular angioplasty of my both jugular veins and the azygos vein, and now, again, I have restenosis on all of them. The angiography finding from 2011 is that the right jugular vein is 60% clogged, the left jugular vein is 80% clogged, and the azygos vein is 70% clogged.
The indication was stenosis of both jugular veins, discovered with Doppler (TCD). I've had CCSVI treatment. Please, don't throw away this message after you read this. I've been working as a vascular nurse for 20 years now, and I am familiar with the circulation of arteries and veins. Unfortunately, I have this disease, and I'm sure, from my experience, that everything is connected to the bad vein circulation and anatomical malformations.

Now I am suggested to implant a stent, but as much as I am informed, there aren't any stents for jugular veins right now.

In summary, my question is are there any researches at your clinic regarding jugular veins, or stents for jugular veins? Do you perform stent implantations for jugular veins at your clinic?
Firstly, restenosis is often caused by underdilation of the venous valvular stenosis. Secondly, it sound like you got more than one year from the last treatment. Why stent if you are doing better and more durable. I do not recommend stents unless restenosis occurs twice within 12 months, or the stenting is to bail out a problem like dissection of the vein or recanalization of an occlusion.

there will not be a specific FDA stent for many years. Just because an FDA sponsored trial has not been done, does not mean that the current devices are not satisfactory. it may just mean that a manufacturer does not want to invest the money in a research project for a new indication for the instrument. You know, there are no angioplasty catheters that have been approved by FDA for angioplasty of the jugular veins either.

i perform stenting in my clinic but i confine it to very specific indications and you do not describe one

DrS


Thank you very much for your answer, Dr. Sclafani.
I am from Southeast Europe, and here they still don't perform stent implantations nor recanalisations. For now, stent implantation is only performed in Katowice, Poland by Dr. Marian Simka. By your opinion, is it recommended performing a stent implantation at least in the jugular veins? What would you recommend? And where else can I read more so I can be as much as informed as I can?

Thanks a lot again for answering, and I believe that your opinion means very much to all of us.
- Dmamzy
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Re: DrSclafani answers some questions

Post by drsclafani »

Dmamzy wrote:
drsclafani wrote:
Dmamzy wrote:I have a question and I hope you will be able to help me.
In 2010 and 2011 I've had jugular angioplasty of my both jugular veins and the azygos vein, and now, again, I have restenosis on all of them. The angiography finding from 2011 is that the right jugular vein is 60% clogged, the left jugular vein is 80% clogged, and the azygos vein is 70% clogged.
The indication was stenosis of both jugular veins, discovered with Doppler (TCD). I've had CCSVI treatment. Please, don't throw away this message after you read this. I've been working as a vascular nurse for 20 years now, and I am familiar with the circulation of arteries and veins. Unfortunately, I have this disease, and I'm sure, from my experience, that everything is connected to the bad vein circulation and anatomical malformations.

Now I am suggested to implant a stent, but as much as I am informed, there aren't any stents for jugular veins right now.

In summary, my question is are there any researches at your clinic regarding jugular veins, or stents for jugular veins? Do you perform stent implantations for jugular veins at your clinic?
Firstly, restenosis is often caused by underdilation of the venous valvular stenosis. Secondly, it sound like you got more than one year from the last treatment. Why stent if you are doing better and more durable. I do not recommend stents unless restenosis occurs twice within 12 months, or the stenting is to bail out a problem like dissection of the vein or recanalization of an occlusion.

there will not be a specific FDA stent for many years. Just because an FDA sponsored trial has not been done, does not mean that the current devices are not satisfactory. it may just mean that a manufacturer does not want to invest the money in a research project for a new indication for the instrument. You know, there are no angioplasty catheters that have been approved by FDA for angioplasty of the jugular veins either.

i perform stenting in my clinic but i confine it to very specific indications and you do not describe one

DrS


Thank you very much for your answer, Dr. Sclafani.
I am from Southeast Europe, and here they still don't perform stent implantations nor recanalisations. For now, stent implantation is only performed in Katowice, Poland by Dr. Marian Simka. By your opinion, is it recommended performing a stent implantation at least in the jugular veins? What would you recommend? And where else can I read more so I can be as much as informed as I can?

Thanks a lot again for answering, and I believe that your opinion means very much to all of us.
- Dmamzy
Dmamzy

i AM NOT RECOMMENDING THAT YOU GET A STENT. YOU DO NOT, AS YOU REPORT HERE, HAVE AN INDICATION FOR A STENT. IF YOU WERE MY PATIENT, I WOULD REPEAT THE VENOGRAM AND THEN DO ANOTHER VENOPLASTY FIRST.

DrS
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Re: DrSclafani answers some questions

Post by drsclafani »

Time for another interesting case report. This one illustrates the usual values of IVUS for determining balloon size, but also the value of IVUS in a case of post treatment stenosis. An interesting case indeed.

This is a 55 year old Canadian woman with SPMS who underwent treatment of both internal jugular vein stenoses in October 2010. The proceduralist detected "mild to moderate stenosis in the midportion and mild to moderate stenosis in the base of the left internal jugular vein", which were treated by 10 mm and 12 mm balloons respectively; he also detected "moderate to severe" stenosis at the base of the right internal jugular vein which was treated by "14 mm high pressure angioplasty for two minutes". They detected no azygos stenosis and did not evaluate the left renal or the ascending lumbar veins.

The patient reported "real and significant improvements" after the procedure but they were "short lived". She states that she sees "more rapid decline now" especially with balance strength and spasticity.

RIGHT JUGULAR ANGIOGRAPHY
Image

Venography (left image) of the right internal jugular vein showed a stenosis of the inferior jugular bulb. IVUS (not shown) revealed that the stenosis was the result of an immobile valve apparatus. The vein was measured such that balloon size was difficult to select. 16 mm seemed a bit too little and 18 mm seemed a bit to big. So i started with the 16 mm balloon. Venography (middle image) looked pretty good but I repeated IVUS and the valve was shown to still have some immobility and stenosis. The 18 mm balloon was used aand it was just fine with no injury and with excellent expansion of the valvular stenosis. A second followup IVUS showed a wide open valve. and the third venogram (right).

So this illustrates the venography was inadequate to size the balloon on the first treatment but IVUS was pretty accurate. IVUS also helped show that the valve was incompletely opened on the 1 mm angioplasty.

LEFT INTERNAL JUGULAR VEIN
Image

This first image (ignore arrows) illustrated the difficulties in advancing the catheter into the dural sinuses. First there were large collateral veins and the wire kept going into them. My partner thought that the jugular vein was occluded at first but with a firm injection at the site of no advancement, i could get some xray contrast media up into the upper vein. Although I could get the 14/1000th inch guidewire up, the catheter would not follow it. It was impossible to do.

So I attempted to advance the IVUS over the guidewire across this obstruction and that was successful. Then I could see the condition of the obstructed vein and the patency of the dural sinus and upper jugular.

Image

in this image the purple arrows point to corresponding sites in the ivus and the venogram. The upper upper IVUS shows that IJV was a decent size, not the largest but certainly acceptable. The middle IVUS shows the area were the catheter would not traverse. The venogram shows a tortuous area and the IVUS shows a pin hole stenosis. The lower IVUS shows that much of this narrowing may be a hypoplasia but the stenosis is made much worse by what looks like intimal hyperplasia. (red arrows).

The three right images show a venogram, and two views of the IVUS The lowest part of the venogram shows a stenosis the upper area of the venogram shows a pretty normal looking lower jugular vein in J2. IVUS shows that there is some intimal hyperplasia (green asterisks) as well as a stenosis caused by bridging tissue, possibly valve remnant, possibly adhesions (orange curved arrows)

None of this could be seen by the venogram.


Image

This image shows the angioplasties. First i decided to dilate the lower segment which required a 16 mm balloon. in other words, the lower obstruction required a larger balloon that had been chosed based upon venography during the patient's prior treatment. I decided to treat this stenosis first because I wanted to be able to get my sheath into the jugular vein. This might allow more forward pressure on the catheter and guidewire and allow me to get a stiffer wire across the higher stenosis. I was correct and it allowed me to force that guidewire through the upper obstruction and ultimately get the higher balloon in position. The upper stenosis required an 8 mm balloon or a smaller balloon that had been chosen based upon venography the last time.

I think that the upper stenosis may have been caused by the larger balloon angioplasty performed the first time. The IVUS and venographic appearance of the stenosis is suggestive of a thrombosis that has developed because of overdilatation. I think that this some of this clot dissolved and resulted in a recanalization track through the thrombus rather than a "mild to moderate" stenosis seen by the first proceduralist. The IVUS appearance has also influenced my decision to treat this patient with prolonged anticoagulation and antiplatelet therapy rather than my standard regimen of one month of pradaxa plus aspirin.

IVUS is the clear winner in this case.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Post by tzootsi »

Hi Dr, very interesting case. Did the woman show any improvements?
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Re: DrSclafani answers some questions

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tzootsi wrote:Hi Dr, very interesting case. Did the woman show any improvements?
procedure was performed on friday. on sunday her two sisters and two friends remarked about stronger voice, clearer thinking and better speech

but time will tell.
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Re: DrSclafani answers some questions

Post by SaintLouis »

Dr. Sclafani,


Have you encountered any CCSVI cases that turned out to be caused by Superior Vena Cava syndrome (not problems with IJV)? I'm wondering if SVCS is a condition that must be found through venography/IVUS or if there is a non-invasive test (like an MRI?) that would show it instead of a venogram?

Thanks for all that you do.

-SaintLouis
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Re: DrSclafani answers some questions

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drsclafani wrote:Image

in this image the purple arrows point to corresponding sites in the ivus and the venogram. The upper upper IVUS shows that IJV was a decent size, not the largest but certainly acceptable. The middle IVUS shows the area were the catheter would not traverse. The venogram shows a tortuous area and the IVUS shows a pin hole stenosis. The lower IVUS shows that much of this narrowing may be a hypoplasia but the stenosis is made much worse by what looks like intimal hyperplasia. (red arrows).

The three right images show a venogram, and two views of the IVUS The lowest part of the venogram shows a stenosis the upper area of the venogram shows a pretty normal looking lower jugular vein in J2. IVUS shows that there is some intimal hyperplasia (green asterisks) as well as a stenosis caused by bridging tissue, possibly valve remnant, possibly adhesions (orange curved arrows)

None of this could be seen by the venogram.
So what we're seeing in the first image is the contrast injected just below the site of that pinhole stenosis, and the dark contrast from there flowing downward and some lighter contrast going up through the pinhole stenosis and out through collaterals. I don't know though why we're not seeing a smaller appearance of the vein in the venogram at the site of what is shown by IVUS to be a pinhole stenosis.

I hope the patient has access to local follow-up care, if there is a greater than usual risk for clotting.
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Re: DrSclafani answers some questions

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SaintLouis wrote:Dr. Sclafani,


Have you encountered any CCSVI cases that turned out to be caused by Superior Vena Cava syndrome (not problems with IJV)? I'm wondering if SVCS is a condition that must be found through venography/IVUS or if there is a non-invasive test (like an MRI?) that would show it instead of a venogram?

Thanks for all that you do.

-SaintLouis
Saint Louis
before there was a syndrome of ccsvi there were patients with superior vena cava who had lethargy and mental confusion. In a sense these were the seminal cases, in my opinion, of CCSVI before the concept was clarified. I have not seen one patient with a diagnosis of ms who had SVC Syndrome resulting from obstruction of the superior vena cava. I do not think that MS predisposes to SVC syndrome. Those patients who have port a caths, or picc lines have some risk but it has more to do with the instrumentation and catheters than it does with the MS.

SVC syndrome is usually diagnosed by CTvenography or MRvenography.

clinical manifestations are usually different with swelling of both arms, the head and prominent chest wall veins.
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Re: DrSclafani answers some questions

Post by drsclafani »

Cece wrote:
drsclafani wrote:Image

in this image the purple arrows point to corresponding sites in the ivus and the venogram. The upper upper IVUS shows that IJV was a decent size, not the largest but certainly acceptable. The middle IVUS shows the area were the catheter would not traverse. The venogram shows a tortuous area and the IVUS shows a pin hole stenosis. The lower IVUS shows that much of this narrowing may be a hypoplasia but the stenosis is made much worse by what looks like intimal hyperplasia. (red arrows).

The three right images show a venogram, and two views of the IVUS The lowest part of the venogram shows a stenosis the upper area of the venogram shows a pretty normal looking lower jugular vein in J2. IVUS shows that there is some intimal hyperplasia (green asterisks) as well as a stenosis caused by bridging tissue, possibly valve remnant, possibly adhesions (orange curved arrows)

None of this could be seen by the venogram.
So what we're seeing in the first image is the contrast injected just below the site of that pinhole stenosis, and the dark contrast from there flowing downward and some lighter contrast going up through the pinhole stenosis and out through collaterals. I don't know though why we're not seeing a smaller appearance of the vein in the venogram at the site of what is shown by IVUS to be a pinhole stenosis.

I hope the patient has access to local follow-up care, if there is a greater than usual risk for clotting.
where the middle purple arrow is, the vein is tortuous and the pinhole is hidden there. another plus for the IVUS.

The patient is from toronto. I will manage the patient from here thank you very much. in general if there is a complicated problem i think it generally best for the patient to return to nyc from toronto
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Re: DrSclafani answers some questions

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drsclafani wrote:The patient is from toronto. I will manage the patient from here thank you very much. in general if there is a complicated problem i think it generally best for the patient to return to nyc from toronto
Lol, ok, very true. I was mainly concerned that the patient have access to a follow-up ultrasound to check for compressibility and thrombus.
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Re: DrSclafani answers some questions

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Cece wrote:
drsclafani wrote:The patient is from toronto. I will manage the patient from here thank you very much. in general if there is a complicated problem i think it generally best for the patient to return to nyc from toronto
Lol, ok, very true. I was mainly concerned that the patient have access to a follow-up ultrasound to check for compressibility and thrombus.
This is a pretty complicated case and ultrasound will be probably misinterpreted by most, including me and my tech on the first one. This lesions is just not where we expect to find disease. I now know exactly where the lesion is and can direct the tech on the area of interrogation. We will make plans to do the ultrasound in new york in three months. I am going to keep her on anticoagulation for three months at a minimum.
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Re: DrSclafani answers some questions

Post by Cece »

drsclafani wrote:Image

This image shows the angioplasties. First i decided to dilate the lower segment which required a 16 mm balloon. in other words, the lower obstruction required a larger balloon that had been chosed based upon venography during the patient's prior treatment. I decided to treat this stenosis first because I wanted to be able to get my sheath into the jugular vein. This might allow more forward pressure on the catheter and guidewire and allow me to get a stiffer wire across the higher stenosis. I was correct and it allowed me to force that guidewire through the upper obstruction and ultimately get the higher balloon in position. The upper stenosis required an 8 mm balloon or a smaller balloon that had been chosen based upon venography the last time.
If you had not gotten the catheter and balloon into position, which sounds as if it was a real challenge, then it couldn't have been treated.
Kudos. :)
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Re: DrSclafani answers some questions

Post by Cece »

I did a search for news on ISNVD 2013, which is currently underway, and I found nothing, nada.
#sad
However an interview with Dr. Sclafani at ISNVD 2012 popped up:
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