DrSclafani answers some questions

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

Postby eric593 » Tue Jun 14, 2011 11:31 pm

Dr. Sclafani, it's been about 7 months that you have been back performing procedures, and I think by your own estimates, you've performed a couple hundred procedures(?), many repeat procedures using innovative and untested treatment methods.

Could you tell us generally how your patients have done following treatment using your specialized approach, whether you continue to see occlusions, clots, etc., and whether results are better, positive and enduring compared to what we understand to be the "1/3's" grouping of results and Dr. Zamboni's stats on re-stenosis.

I haven't seen a steady stream of good, enduring testimonials from your patients in spite of your presentations of individual case studies and your identification of discrete lesions that might have otherwise been missed and your change in treatment methods.

Are you seeing trends that you can share of your patients' results that might help us all understand how your approach is now working in terms of actual impact on patient health beyond improved blood flow?
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Postby drsclafani » Wed Jun 15, 2011 7:59 am

eric593 wrote:Dr. Sclafani, it's been about 7 months that you have been back performing procedures, and I think by your own estimates, you've performed a couple hundred procedures(?), many repeat procedures using innovative and untested treatment methods.


eric, i do not think that untested treatment methods is an accurate or fair statement. Everything that i have described is a well accepted treatment. For example, balloon angioplasty of valves is well known and accepted. Rendevous procedures have been done for quite some time. I would agree that these well tested treatment methods have been used in innovative ways to overcome some obstacles.

Could you tell us generally how your patients have done following treatment using your specialized approach,

whether you continue to see occlusions, clots, etc.,

I have not yet seen an occlusion since i have redefined the angioplasty endpoints by using IVUS and dilating to a balloon diameter that has a cross sectional area that is 1.5-2 times the cross sectional area of the vein surrounding the stenosis and better standardized my anticoagulation regimen.


and whether results are better, positive and enduring compared to what we understand to be the "1/3's" grouping of results and Dr. Zamboni's stats on re-stenosis.


i have not seen any results that speak about 1/3 groupings of results. Besides, it would be difficult to understand that or compare that without knowing EDSS, duration of symptoms, classification of MS, and many other variables. That said, i can generalize to say that outcomes remain unpredictable, some patients do very well, some have great improvements, others have modest improvements, others still have no improvements and an occasional patient gets worse.

Of course, long term outcomes are not really possible to discern yet.

I haven't seen a steady stream of good, enduring testimonials from your patients in spite of your presentations of individual case studies and your identification of discrete lesions that might have otherwise been missed and your change in treatment methods.

I cannot speak about testimonials. I have difficulty interpreting them.


Are you seeing trends that you can share of your patients' results that might help us all understand how your approach is now working in terms of actual impact on patient health beyond improved blood flow?


Not really. too many variables and too short a followup.
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Postby Cece » Wed Jun 15, 2011 8:35 am

From the link, www.ccsvisymposium.com/ :
Target Audience

The symposium will be of value to interventional radiologists, vascular surgeons, neurologists and other medical professionals who work with MS patients or who specialize in endovascular therapy.
Learning Objectives

Upon completion of this activity, the physician should be able to:
• Understand the theory of chronic cerebrospinal venous insufficiency (CCSVI).
• Recommend and implement pre-procedural diagnostic imaging techniques to identify patients with CCSVI.
• Explain the rationale behind interventional treatment of CCSVI.
• Appropriately choose patients who may benefit from interventional treatment of CCSVI.
• Recognize the vascular anatomy and pathology seen in patients affected by CCSVI.
• Describe the various technical aspects of the endovascular treatment of CCSVI.
• Recognize and describe possible outcomes, complications and limitations of interventional treatment of CCSVI.
• Develop a plan of longitudinal follow-up of treated patients.
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Presenters?

Postby dianabee » Wed Jun 15, 2011 9:15 am

Cece wrote:From the link, www.ccsvisymposium.com/ :
Target Audience

The symposium will be of value to interventional radiologists, vascular surgeons, neurologists and other medical professionals who work with MS patients or who specialize in endovascular therapy.
Learning Objectives

Upon completion of this activity, the physician should be able to:
• Understand the theory of chronic cerebrospinal venous insufficiency (CCSVI).
• Recommend and implement pre-procedural diagnostic imaging techniques to identify patients with CCSVI.
• Explain the rationale behind interventional treatment of CCSVI.
• Appropriately choose patients who may benefit from interventional treatment of CCSVI.
• Recognize the vascular anatomy and pathology seen in patients affected by CCSVI.
• Describe the various technical aspects of the endovascular treatment of CCSVI.
• Recognize and describe possible outcomes, complications and limitations of interventional treatment of CCSVI.
• Develop a plan of longitudinal follow-up of treated patients.

Can you please share with us who will be the presenters for the segments of the patient day portion of the symposium? Thank you!
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CCSVI symposium

Postby LauraV » Wed Jun 15, 2011 2:52 pm

Dr. Sclafani,

My question today is a practical one. I'm feeling so much better since my procedure with you. My stamina is good. I feel stronger, BUT I don't know how well I'll hold up at an all-day conference in a Manhattan hotel. I'm wondering if I should take a wheel chair. What kind of space are we talking about?
Any suggestions?

Thanks,
Laura
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Postby pklittle » Wed Jun 15, 2011 5:11 pm

Can you please share with us who will be the presenters for the segments of the patient day portion of the symposium? Thank you!





Ditto
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Postby AlmostClever » Wed Jun 15, 2011 6:03 pm

Dr. Sclafani (or Cece!),

I've been away for awhile and missed about 30 pgs...

Have you seen any problems with vertebral veins? and has any progress been made in treating these? what's the issue in treating vertebral veins?

The reason I ask is that I remember one doc saying he accidentally entered one of mine (is that possible?) and the next 3 days were the best I've had in years. I had a squishy vein noise in the back of my neck prior and it was gone during those 3 days. Just wondering if he un-kinked something by accident temporarily.

Thanks!

A/C
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Postby Cece » Wed Jun 15, 2011 6:27 pm

AlmostClever wrote:Dr. Sclafani (or Cece!),

:D
I will defer to Dr. Sclafani.
Although you can assume I have an opinion.
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Postby pklittle » Wed Jun 15, 2011 8:36 pm

registration is below projections


Any speculation as to why?
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Postby Nola » Thu Jun 16, 2011 5:13 am

Dr Sclafani, thank you for the brilliant case studies. You could write a whole book just from this thread. Can I ask why are arachnoid granulations nothing to treat? If they are a physical structure, it seems like they would have an impact on drainage and flow. How often do you see them? Do you ever do anything at all with them?


The hotel 800 number said the patient rooms were all sold out weeks ago when I called to try to come. This must mean the professional numbers are the only area that is below expectation. I sent the information to more doctors. I hope this adds a few professionals.
</div><div>Every moment of light and dark is a miracle. -- Walt Whitman</div><div>
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Easy question?

Postby bonzo1986 » Thu Jun 16, 2011 5:54 am

Dr Sclafani,


Is it possible to have an MRV, venography done on the spine?

Reason I ask... Wife had an MRI (brain, spine) done recently and the radialogist has found either a tumor or "vasular malformation" in the spine itself. We are scheduled to see a neurosurgen end of the month.

If it is vascular, is that somthing that could be repaired by an IR? Or is surgery they only way to repair something like that?

Thank you for any opinion you have
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Postby Cece » Thu Jun 16, 2011 8:17 pm

drsclafani wrote:
Selective catheterization of the right internal jugular vein was performed first. I knew i was in the jugular vein because of the guidewire went into the dural sinuses.

Did you get the jugular vein on your first try?


yup :D

Impressive
drsclafani wrote:I have not yet seen an occlusion since i have redefined the angioplasty endpoints by using IVUS and dilating to a balloon diameter that has a cross sectional area that is 1.5-2 times the cross sectional area of the vein surrounding the stenosis and better standardized my anticoagulation regimen.

And also impressive.
:wink:
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Postby drsclafani » Thu Jun 16, 2011 9:03 pm

Nola wrote:Dr Sclafani, thank you for the brilliant case studies. You could write a whole book just from this thread. Can I ask why are arachnoid granulations nothing to treat? If they are a physical structure, it seems like they would have an impact on drainage and flow. How often do you see them? Do you ever do anything at all with them?


The hotel 800 number said the patient rooms were all sold out weeks ago when I called to try to come. This must mean the professional numbers are the only area that is below expectation. I sent the information to more doctors. I hope this adds a few professionals.


sorry i have been aaway so long. been ill and too busy

this is not correct. we only had the rooms reserved a few weeks ago. they are not sold out. try again while i try to figure out what you are speaking about.

DrS

and thanks for the kind thoughts
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Re: CCSVI symposium

Postby drsclafani » Thu Jun 16, 2011 9:06 pm

LauraV wrote:Dr. Sclafani,

My question today is a practical one. I'm feeling so much better since my procedure with you. My stamina is good. I feel stronger, BUT I don't know how well I'll hold up at an all-day conference in a Manhattan hotel. I'm wondering if I should take a wheel chair. What kind of space are we talking about?
Any suggestions?

Thanks,
Laura


laura
i made every effort to assure wheel chair space and accessibility. whether you want to bring the chair is up to you. i like my work but you know your body better than me :)
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Postby drsclafani » Thu Jun 16, 2011 9:08 pm

AlmostClever wrote:Dr. Sclafani (or Cece!),

I've been away for awhile and missed about 30 pgs...

Have you seen any problems with vertebral veins? and has any progress been made in treating these? what's the issue in treating vertebral veins?

The reason I ask is that I remember one doc saying he accidentally entered one of mine (is that possible?) and the next 3 days were the best I've had in years. I had a squishy vein noise in the back of my neck prior and it was gone during those 3 days. Just wondering if he un-kinked something by accident temporarily.

Thanks!

A/C


generally, i thiink this is no man's land right now. I look when i have an opportunity and they just dont have any clarity yet for stenoses, etc. i havent heard anything yet. probably good because that would confuse us more than we can handle right now.

I have just started to routinely assess the junction between the brain and the neck by catheterizing the dural sinuses. i am pleased to have a complete exam of the jugular now, but have only found one abnormality so far in about 20 cases.
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