DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: DrSclafani answers some questions

Postby cheerleader » Fri Dec 20, 2013 8:01 pm

Thanks for alerting us to the study, Dr. S! Here's the direct link: http://pubs.rsna.org/doi/abs/10.1148/radiol.13131669

I understand that the heavy metal gadolinium is chelated, to prevent injury when used as a contrast agent---but it is still a heavy metal, and affects nitric oxide and the cerebral endothelium. Looks like repeat exposure is making the blood brain barrier even more permeable, as shown in the increase of lesions. Just what pwMS don't need....contrast agent induced lesions which encourage their neuros to prescribe even stronger immune ablating medications and more MRIs. Yikes!
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: DrSclafani answers some questions

Postby Cece » Fri Dec 20, 2013 10:32 pm

Back when I first switched to an MS specialist, he discussed the possible risks of gadolinium contrast in the brain when going through the pros and cons of getting an MRI.
Do neurologists read the journal Radiology?
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Re: DrSclafani answers some questions

Postby Squeakycat » Fri Dec 20, 2013 10:57 pm

Cece wrote:Do neurologists read the journal Radiology?
Of course. That's how they keep up on CCSVI. :>)
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Re: DrSclafani answers some questions

Postby drsclafani » Tue Dec 24, 2013 10:55 pm

Image
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby NZer1 » Tue Dec 24, 2013 11:27 pm

Thanks Sal,
and to everyone, I hope that you have a great time over the holiday period.

:)
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Re: DrSclafani answers some questions

Postby Robnl » Wed Dec 25, 2013 1:03 am

Nice pic, same wishes to everyone
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Re: DrSclafani answers some questions

Postby Cece » Wed Dec 25, 2013 1:30 pm

When you hear hoofbeats, think horses, not zebras.
In MS patients, aren't the outflow obstructions common enough that it IS horses, not zebras? No stripes to be seen.
It would be nice if everyone who looked saw it the same way.
Beautiful picture.
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Re: DrSclafani answers some questions

Postby pelopidas » Fri Dec 27, 2013 7:06 am

Image



you're right, Cece
here's a friend of mine, trying to explain the ccsvi in a simple way
i've started to follow these private lessons and i got better in this field!

Happy New Year everybody!
getafix
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Dec 27, 2013 10:08 am

pelopidas wrote:Image



you're right, Cece
here's a friend of mine, trying to explain the ccsvi in a simple way
i've started to follow these private lessons and i got better in this field!

Happy New Year everybody!


Thanks
your image is old now. It is more graphic and I find it very useful as a guide to explain the principles of CCSVI to my patients.

I will dig up, scan and post the latest version, with and without all my extra doodles and explanations

much love to all

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

Postby Robnl » Fri Dec 27, 2013 10:23 am

I got one, i got one :lol: :wink: (a real Sal Sclafani drawing)
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Re: DrSclafani answers some questions

Postby EJC » Sun Dec 29, 2013 9:07 am

Dr S,

How would you deal with a patient presenting hypoplasia in one IJV?

Right IJV = approx 12mm
Left IJV = approx 6mm

Signs of malformed valves in both IJVs.

e.g. Would this warrant looking at the vertebral venous plexus? Or even consideration of a replacement graft for the left IJV?

I guess what I'm asking is, with the presentation of a clear physical underdevelopment, would it guide your treatment in a different route to normal (if there is in fact a normal)?
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Dec 29, 2013 1:04 pm

EJC wrote:Dr S,

How would you deal with a patient presenting hypoplasia in one IJV?

Right IJV = approx 12mm
Left IJV = approx 6mm

Signs of malformed valves in both IJVs.

e.g. Would this warrant looking at the vertebral venous plexus? Or even consideration of a replacement graft for the left IJV?

I guess what I'm asking is, with the presentation of a clear physical underdevelopment, would it guide your treatment in a different route to normal (if there is in fact a normal)?


Well, measuring vessels is a real challenge, especially using venography. I would definitely want to do IVUS because I would like to know if these numbers you give are the larger or the smaller dimensions of the vein. they are the same ONLY when the vein is a circle, not all that common.

I would consider a vein hypoplastic if it measured less 19 square millimeters, i.e, less that 5 mm circular diameter. I would want to know whether there was poor flow or stenosis out of the dural sinuses to cause this, and after that i would treat both valvular stenoses first to see what type of response occurred. I am very reluctant to try to dilate very much any hypoplastic veins unless it is focal. My outcomes of treating diffuse hypoplasia have been disappointing.

I would not look vertebral plexus on the first go around. I am not convinced that it is a critical vessel of brain drainage most of the time, nor is it often involved in the malformative process.

Replacement grafting is also an unknown and if the entire vein is hypoplastic you must find a place to graft to the upper end. where would that be? But i am no surgeon

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Re: DrSclafani answers some questions

Postby EJC » Sun Dec 29, 2013 3:43 pm

drsclafani wrote:Well, measuring vessels is a real challenge, especially using venography. I would definitely want to do IVUS because I would like to know if these numbers you give are the larger or the smaller dimensions of the vein. they are the same ONLY when the vein is a circle, not all that common.

I would consider a vein hypoplastic if it measured less 19 square millimeters, i.e, less that 5 mm circular diameter. I would want to know whether there was poor flow or stenosis out of the dural sinuses to cause this, and after that i would treat both valvular stenoses first to see what type of response occurred. I am very reluctant to try to dilate very much any hypoplastic veins unless it is focal. My outcomes of treating diffuse hypoplasia have been disappointing.

I would not look vertebral plexus on the first go around. I am not convinced that it is a critical vessel of brain drainage most of the time, nor is it often involved in the malformative process.

Replacement grafting is also an unknown and if the entire vein is hypoplastic you must find a place to graft to the upper end. where would that be? But i am no surgeon

DrS


Thank you for the detailed answer, this is really helpful in our decision making process.

The numbers provided by me above are 3 years old from a procedure in Edinburgh and I watched them being produced from an ultrasound scan. With the benefit of three years advancement (and IVUS) I know how inaccurate these could potentially be. What we can say with a reasonable degree of certainty is Emma's left IJV is smaller than normal, somewhere around half the expected size at a calculated guess by Dr Reid. Any more detail than that is speculative.

Emma has had great results seeing Dr Amir for jaw and skeletal work which were clearly an issue, so certain symptoms have been addressed away from blood or CSF flow.

However, Emma is a left with a couple of symptoms that are refusing to improve, mainly eyesight (she's been diagnosed with one and half syndrome). This is the single major improvement from her procedure 3 years ago that regressed over the last 3 years back to where she started. Also gait and walking in general, which is an area that's also frustrating Dr Amir.

So this leaves us with the probability that Emma had skeletal/jaw issues plus bloodflow/csf issues.

Emma is considering a trip to Brooklyn to see you as we both hope that a further CCSVI procedure with the benefit of a further 3 years knowledge may repeat the improvements and maybe make them a little more permanent.

I asked you a while back (in this huge thread) where you felt you were with CCSVI now you've seen a number of patients over the years. It was a question that understandably you couldn't simply draft a 5 line reply to. So being a bit more specific. How much more do you understand about CCSVI now than 3 years ago?
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Dec 30, 2013 7:46 am

EJC wrote:
I asked you a while back (in this huge thread) where you felt you were with CCSVI now you've seen a number of patients over the years. It was a question that understandably you couldn't simply draft a 5 line reply to. So being a bit more specific. How much more do you understand about CCSVI now than 3 years ago?

The procedure has a certain routine and flow now. the anguish over certain questionable findings is no longer presence. There are things that i just do not attempt to treat as the outcomes often end up worse than the beginning

So I would say that the difference between 2010 and 2013 is confidence and regimentation of the technique of the procedure. In truth, I do no portion of this procedure at the present time like i did the procedure in 2010.

In three years i have become pretty good at neurological evaluation, can complete the procedure in less that three hours and not lose so much sleep over my patients' conditions

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

Postby EJC » Mon Dec 30, 2013 9:03 am

drsclafani wrote:
EJC wrote:
I asked you a while back (in this huge thread) where you felt you were with CCSVI now you've seen a number of patients over the years. It was a question that understandably you couldn't simply draft a 5 line reply to. So being a bit more specific. How much more do you understand about CCSVI now than 3 years ago?

The procedure has a certain routine and flow now. the anguish over certain questionable findings is no longer presence. There are things that i just do not attempt to treat as the outcomes often end up worse than the beginning

So I would say that the difference between 2010 and 2013 is confidence and regimentation of the technique of the procedure. In truth, I do no portion of this procedure at the present time like i did the procedure in 2010.

In three years i have become pretty good at neurological evaluation, can complete the procedure in less that three hours and not lose so much sleep over my patients' conditions

DrS


Thank you that's really very interesting to see how things have evolved in a such a relatively short period of time.
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