DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » Sat Nov 01, 2014 6:18 pm

Cece wrote:An old article that came up in a search for vein stenosis, because yeah I search that:
Axillary and subclavian vein stenosis: percutaneous angioplasty.

S Glanz
D H Gordon
G S Lipkowitz
K M Butt
J Hong
S J Sclafani

Department of Radiology, State University of New York, Health Science Center, Brooklyn 11203.
Radiology (Impact Factor: 6.34). 09/1988; 168(2):371-3.

Source: PubMed
ABSTRACT Twenty-nine percutaneous balloon dilations of the axillary and subclavian veins were performed in 19 patients. Stenoses occurred in typical locations of anatomic narrowing or at sites of previous trauma. The initial success rate was 76%, with a 1-year patency rate of 35% and a 2-year patency rate of 6%. Angioplasty can be performed on an outpatient basis with a very low rate of significant complications and can be repeated numerous times to keep a vein patent for many years. This procedure is especially valuable in dialysis patients who have limited access sites.
http://www.researchgate.net/publication ... ngioplasty

These are different veins and different disease than CCSVI patients but that 2-year patency rate is very much the opposite of durable. Do you have an estimate of the 2-year patency rate in CCSVI?

MarkW, when you had your Nutcracker syndrome treated, how did your jugulars look? Was there any need for retreating? I hope when you say you will write further in the future, that you are referring to the near future, because this is an interesting development, and another case of renal stenosis treated long after other ccsvi stenoses are treated, which isolates the effect of the renal stenosis treatment.
These are not really veins; rather they are connections of veins to arteries. The high pressure differences between the artery and the vein lead to severe intimal hyperplasia unlike what happens in ccsvi with abnormal valves in direct line flowing veins.

Patency (not the same as re-stenosis) at two years is greater than 95% among the patients who i have re-imaged at two years, with most occlusions occurring relatively early after treatment. Restenosis rates probably remain low for three years, but the data is only anecdotal as routine followup venography is not done, unlike patients with dialysis lesions.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by Cece » Wed Nov 05, 2014 5:24 am

So we need this study done:
http://www.jvascsurg.org/article/S0741- ... 4/fulltext
Is Routine Follow-up Angiography Warranted After Dialysis Access Intervention?
only restated as Is Routine Follow-up Angiography Warranted After CCSVI Intervention?
(and the anticipated results would be, no, the veins are staying open, the follow-up is only needed after specific indications.)

We are having setbacks that include actual rocket explosions. May you live in exciting times?

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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » Wed Nov 05, 2014 9:15 am

Cece wrote:So we need this study done:
http://www.jvascsurg.org/article/S0741- ... 4/fulltext
Is Routine Follow-up Angiography Warranted After Dialysis Access Intervention?
only restated as Is Routine Follow-up Angiography Warranted After CCSVI Intervention?
(and the anticipated results would be, no, the veins are staying open, the follow-up is only needed after specific indications.)

We are having setbacks that include actual rocket explosions. May you live in exciting times?
if it were financially possible, I would repeat venography on every patient at six months just to find those who restenose and treat them again early

but without evidence it is difficult to recommend such an expensive approach

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by Robnl » Thu Nov 20, 2014 11:46 am


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Re: DrSclafani answers some questions

Post by CureOrBust » Fri Nov 21, 2014 2:06 am

drsclafani wrote:if it were financially possible, I would repeat venography on every patient at six months just to find those who restenose and treat them again early
In your opinion, would you hold the same recommendation for someone who saw no improvements during or after your first treatment?

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Re: DrSclafani answers some questions

Post by Thekla » Fri Nov 21, 2014 6:52 am

The article by Schelling mentions the sigmoid sinus veins. What do you think of them? Are they routinely checked? I haven't heard as much discussion about them as IJV/azygous and even renal. I do know of a patient who had a stent placed there in 2010 and is now asymptomatic and living a normal life.

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Re: DrSclafani answers some questions

Post by drsclafani » Fri Nov 21, 2014 1:46 pm

Robnl wrote:HAve you seen this, doc?

http://www.pagepressjournals.org/index. ... .4828/4276
Yes Rob

i had my first discussion with Professor Reekers on this topic in september 2009. At that time he thought that the entier idea of ccsvi was preposterous. In 2010 and 2011 I heard his debate the idea of ccsvi in a condescending way. I guess he has not changed his mind. I have no further comment to my esteemed colleague
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by drsclafani » Fri Nov 21, 2014 1:48 pm

CureOrBust wrote:
drsclafani wrote:if it were financially possible, I would repeat venography on every patient at six months just to find those who restenose and treat them again early
In your opinion, would you hold the same recommendation for someone who saw no improvements during or after your first treatment?
That depended on whether I thought that the procedure was a complete one. Most, in my opinion are not complete since they do not use ivus, study the ten veins that I do and treat by angioplasty using high pressure angioplasty of sufficient size to expand the vein about 50%

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by drsclafani » Fri Nov 21, 2014 1:53 pm

Thekla wrote:The article by Schelling mentions the sigmoid sinus veins. What do you think of them? Are they routinely checked? I haven't heard as much discussion about them as IJV/azygous and even renal. I do know of a patient who had a stent placed there in 2010 and is now asymptomatic and living a normal life.
I have routinely imaged the dural sinuses, including the transverse sinus and the sigmoid sinus. I image them because i must assure myself that the entire internal jugular vein is imaged, that the vein imaged actually is the internal jugular vein, that the dural sinus is not stenotic or thrombosed. I have rarely found an abnormality of the dural sinues itself. I do not think that it is a common part of the ccsvi syndrome associated with MS. Such stenoses or thromboses are often due to other causes such as hypercoaguability causing thrombosis, fractures causing injury and infection resulting in thrombosis or stenosis. However, I do believe that these types of lesions can cause symptoms of ccsvi
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by CureOrBust » Fri Nov 21, 2014 5:30 pm

drsclafani wrote:That depended on whether I thought that the procedure was a complete one. Most, in my opinion are not complete since they do not use ivus, study the ten veins that I do and treat by angioplasty using high pressure angioplasty of sufficient size to expand the vein about 50%
Sorry if I was not clear enough, but I was specifically talking about treatment from yourself (just over a year ago). Which included IVUS with a number of treatment locations and the pain certainly indicates a high pressure balloon was used to me.

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Re: DrSclafani answers some questions

Post by Robnl » Fri Nov 21, 2014 10:56 pm

The veith symposium , NY


DId you attend, doc?

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Re: DrSclafani answers some questions

Post by SophieandElle » Sat Nov 22, 2014 11:44 am

Hi Dr. S,

What does it mean if your IR says that your IJV narrowing is too dangerous to mess with? Mine is right at C1. I am a bit disappointed hearing this after the test. Do you ever find them too dangerous to try to fix?

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Re: DrSclafani answers some questions

Post by dc10 » Fri Nov 28, 2014 7:12 am

Hi Dr S,
I have had balloon angioplasty three times:
08/2010: both IJVs
12/2010: both IJVs again and Azygos vein
05/2011: both IJVs and Aygos vein

This year i had a novel stem cells with balloon angio treatment.
The IR only saw stenosis in my left IJV but they don't use IVUS, unfortunately.
Please see this short youtube video of my MRV.



I appreciate the 2D imaging is poor for evaluating MRVs but do you feel there is no stenosis in my right IJV and azygos?

Do you feel having balloon angio 3 times in the IJVs and 2 times in the Azygos can permanently keep a vein dilated?

Have you seen permanent dilation in IJVs and Azygos veins from multiple balloon angioplasties alone?

Thank you Doctor

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Re: DrSclafani answers some questions

Post by 1eye » Fri Nov 28, 2014 10:17 am

Doesn't look like MR to me... :-)
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

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Re: DrSclafani answers some questions

Post by Cece » Mon Dec 01, 2014 7:12 am

SophieandElle wrote:Hi Dr. S,

What does it mean if your IR says that your IJV narrowing is too dangerous to mess with? Mine is right at C1. I am a bit disappointed hearing this after the test. Do you ever find them too dangerous to try to fix?
This is a great question and we can bump it forward if he doesn't see it.

What test did you have done (was it an ultrasound)? Was the person doing the test experienced with CCSVI ultrasounds? The most comprehensive test, in my opinion, is intravascular ultrasound done from within the vein as part of a venogram. It's a possibility (maybe a strong possibility) that you have the C1 narrowing and also other narrowings elsewhere currently undiagnosed. If the other narrowings can be treated, it might very well be ok to leave the C1 narrowing alone.

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