DrSclafani answers some questions

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

Re: inverted valves in both jugular veins

Postby drsclafani » Mon Jul 05, 2010 1:37 pm

LadyGazelle wrote:Doppler impression: Questionable inverted venous valves in both internal jugular veins low in the neck just above the clavical with increased venous flow through the vetebral veins in both the supine and sitting positions. The internal jugular veins appeared relatively normal in caliber.

Recommendation: Might recommend MR venogram to further assess the cerebral spinal venous flow to determine whether these questionably inverted valves are true producing reflux or simply artifact on the ultrasound.

If the MRV scheduled for 7/7/10 shows they are in fact inverted valves, would balloon venoplasty keep the valve open when the balloon is removed?

I'll WAIT for improved stent procedure if that's required. :roll:


i need to see the images to have an opinion

Your doppler described only one finding, the Bmode abnormality. There is no description of the pressence of reflux or no flow in either jugular or either vertebral or the deep cerebral veins. And no discussion of Delta CSA in supine and erect. What you describe might not have been done by the Ferrara doppler technique.
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exact wording of doppler report

Postby LadyGazelle » Mon Jul 05, 2010 2:39 pm

EXAM PERFORMED: Internal Jugular Vein Ultrasound

Indication for Exam: Question Cerebrospinal Venous Insufficency

FINDINGS: Bilateral internal jugular veins were imaged using duplex colorflow ultrasound. Both jugular veins appear patent with no obvious evidence of stenoses or obstruction(s). Both internal jugular veins low in the neck just above the clavicle showed questionably inverted venous valves producing some amount of reflux by colorflow ultrasound. The vertrebral veins were also examined bilaterally and appeared to show an increase in venous flow while patient ewsds in both the supine and sitting positions. The internal jugular veins appeared relatively normal in caliber in both the supine and sitting positions.

IMPRESSION: Questionable inverted venous valves in both internal jugular vein low n the neck with increased venous flow through the vertebral veins.

RECOMMENDATION: Might recommend MR venagram to further assess the cerebral spinal venous flow in hopes of determining whether these questionably inverted valves are true producing reflux or simply artifact on the ultrasound.

I have the cd of the doppler but I can't put the image here.

Understand that I will be the first person in Rochester, NY who has had the doppler done and I provided the protocol to the technician. I have also provided the MRV protocol to the radiologist who will be doing that test. So they have everything - including an MRI of my brain from last November showing the UBO's and meningeoma that was found in 1991 but hasn't changed over the years.

I have had MS since 1972 and had RRMS until 1999 when it changed to SPMS. Since 2007 I have had intermittent double vision which is now sustained and using a prism on one lens helps to be able to drive. I have a wide gait but using Ampyra helps walking and stamina.

I am working with my primary care physician and not my neurologist who I feel doesn't have the time for me. However because my pcp tells me not to get my hopes up, I am only using him to get the testing done.

He wouldn't know what's next as far as the MRV goes - I had to tell him what I have learned on my own. I don't know how it is being accepted by the IR. He gave himself a week to do some more studying up on what my doctor wanted done (for me). So I provided that IR with a stack of papers besides the protocols that I have found on www.patientslikeme.com

Now you have the full story. Sorry if it is not appropriate here - but I am alone in this pursuit. Thank you for your assistance in giving me a heads up on what to expect after the MRV and how venoplasty could correct the problem or not.
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stopping meds prior?

Postby Thekla » Mon Jul 05, 2010 4:28 pm

I am wondering about stopping supplements or medications prior to treatment. I've heard some have been told to stop omega 3 or vitamin k or even vitamin c? Some people say to stop ibuprofen or aspirin prior. What do I need to do to prepare for testing/treatment? I'm scheduled in Germany and communication has been very concise. I also know that the doctor is on vacation prior--I hope he comes back relaxed and in great form! I just wish I had some instructions.
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Re: exact wording of doppler report

Postby drsclafani » Mon Jul 05, 2010 5:10 pm

LadyGazelle wrote:EXAM PERFORMED: Internal Jugular Vein Ultrasound

Indication for Exam: Question Cerebrospinal Venous Insufficency

FINDINGS: Bilateral internal jugular veins were imaged using duplex colorflow ultrasound. Both jugular veins appear patent with no obvious evidence of stenoses or obstruction(s). Both internal jugular veins low in the neck just above the clavicle showed questionably inverted venous valves producing some amount of reflux by colorflow ultrasound. The vertrebral veins were also examined bilaterally and appeared to show an increase in venous flow while patient ewsds in both the supine and sitting positions. The internal jugular veins appeared relatively normal in caliber in both the supine and sitting positions.

IMPRESSION: Questionable inverted venous valves in both internal jugular vein low n the neck with increased venous flow through the vertebral veins.

RECOMMENDATION: Might recommend MR venagram to further assess the cerebral spinal venous flow in hopes of determining whether these questionably inverted valves are true producing reflux or simply artifact on the ultrasound.

I have the cd of the doppler but I can't put the image here.

Understand that I will be the first person in Rochester, NY who has had the doppler done and I provided the protocol to the technician. I have also provided the MRV protocol to the radiologist who will be doing that test. So they have everything - including an MRI of my brain from last November showing the UBO's and meningeoma that was found in 1991 but hasn't changed over the years.

I have had MS since 1972 and had RRMS until 1999 when it changed to SPMS. Since 2007 I have had intermittent double vision which is now sustained and using a prism on one lens helps to be able to drive. I have a wide gait but using Ampyra helps walking and stamina.

I am working with my primary care physician and not my neurologist who I feel doesn't have the time for me. However because my pcp tells me not to get my hopes up, I am only using him to get the testing done.

He wouldn't know what's next as far as the MRV goes - I had to tell him what I have learned on my own. I don't know how it is being accepted by the IR. He gave himself a week to do some more studying up on what my doctor wanted done (for me). So I provided that IR with a stack of papers besides the protocols that I have found on www.patientslikeme.com

Now you have the full story. Sorry if it is not appropriate here - but I am alone in this pursuit. Thank you for your assistance in giving me a heads up on what to expect after the MRV and how venoplasty could correct the problem or not.


So close to Buffalo, yet so so far away. We are so focused here on CCSVI, that it sometimes startling to see that there are those who are early trailblazers. It is so sad that you are alone in taking the intitiatives here, that your care givers are following your lead. Such is the way with CCSVI in 2010.

please tell your IR that i have written a primer in ENDOVASCULAR TODAY. It should come out next month.

He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY. I will be joined by Dr. Siskin of Albany Medical College, Dr. Sinan, leader of the Kuwaiti trial, Dr. Haacke and Dr. Salvi, of Ferrara fame. We will discuss CCSVI and focus on techniques with colleagues from mostly the East Coast, but also from South American and perhaps Europe.

He can enroll by emailing me at CCSVISymposium@gmail.com. We hope to see him there.


with regard to MRvenography, it may show collateral veins, some narrowings that may or may not be persistent. If you have inverted valves then you surely need a catheter venogram to assess this properly.
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Re: stopping meds prior?

Postby drsclafani » Mon Jul 05, 2010 5:12 pm

Thekla wrote:I am wondering about stopping supplements or medications prior to treatment. I've heard some have been told to stop omega 3 or vitamin k or even vitamin c? Some people say to stop ibuprofen or aspirin prior. What do I need to do to prepare for testing/treatment? I'm scheduled in Germany and communication has been very concise. I also know that the doctor is on vacation prior--I hope he comes back relaxed and in great form! I just wish I had some instructions.


If your doctor has given you instructions, then follow them. if he has not, then just go about your normal routine.

Some stop aspirin to avoid a risk of hemorrhage. I do not. others avoid vitamin K to avoid clotting. I do not

but your doctor may have a strategy that accounts for such advice and his treatments and plans may depend on those circumstances

So it is more important to speak to your doctor about this
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Postby newlywed4ever » Mon Jul 05, 2010 5:13 pm

Dr S wrote: "i retract my apology....somehow, not sure how i corrected things, but the picture is now visible"
Serendipity!! You chose to correct the ignorance - and you did without knowing exactly how.
Dr S - I have a confession to make. I was willing to wait for you but have now chosen the first doc to make a serious commitment. My daughter and I have appts 8/5. Can we stay on your list in case there is restenosis? Or is this ethically wrong?
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Re: exact wording of doppler report

Postby L » Mon Jul 05, 2010 5:18 pm

drsclafani wrote:He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY. I will be joined by Dr. Siskin of Albany Medical College, Dr. Sinan, leader of the Kuwaiti trial, Dr. Haacke and Dr. Salvi, of Ferrara fame. We will discuss CCSVI and focus on techniques with colleagues from mostly the East Coast, but also from South American and perhaps Europe.


Sounds great! Wish I could make it.. Hope it'll be available to watch online afterwards.
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Re: exact wording of doppler report

Postby Cece » Mon Jul 05, 2010 5:38 pm

drsclafani wrote:please tell your IR that i have written a primer in ENDOVASCULAR TODAY. It should come out next month.

He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY.

So much going on! This is great. :D
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Postby Pauline » Mon Jul 05, 2010 6:12 pm

Sorry just posted a question as a new topic! My question is for Dr. Sclafani!

Dr. Sclafani I'd like to ask you a couple of questions.

I had a stent put into my left IJV and there now seems to be some re-narrowing (intra-stent stenosis maybe due to intimal hyperplasia). My doctor is going to try to open the vein more again ( a different doctor to the one who did the original angioplasty for which I had to travel).
My vein had an obvious narrowing in it and when they inflated the balloon, this didn't inflate fully - looked like a couple of linked sausages (my vein was obviously resistant to being opened fully). When they put the stent in, the end appears just above the narrowing and is also kinked where the narrowing is so they didn't succeed in opening my vein fully. There was however better blood flow than originally and I truly felt the difference in my symptoms. My walking was stronger, my balance was better and my head was much clearer. Needless to say I have now lost some of my gains.

The doctor doing my procedure this time has asked me what type of balloon they used first time round. I was told they used 6 bar or 12 bar pressure for inflating the balloon during my 1st procedure (is this conventional or high pressure??) He says he has no high-pressure balloons available and is going to try with a conventional balloon.

I'm sure my IR knows exactly what he's doing but this information is to help me understand more about the whole process and to perhaps find a solution for my own vein problem. I want to be realistic about my expectations of this next procedure so I need to know in my own mind if he's likely to succeed any better than the first doctor if he uses the same balloon type & pressure, and if he proposes using the same, whether it's even worth trying.

1. If he used a high-pressure balloon, would this be more likely to open my vein fully or could this rupture the vein?
2. What is the difference between high-pressure and conventional balloons in terms of the pressure used to inflate them (bars or atm - e.g. up to how many bar is a conventional balloon pressure, then a high-pressure, then ultra-high).

I appreciate your help with this. Thank you,
Pauline[/img]
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Postby drsclafani » Mon Jul 05, 2010 8:28 pm

PCakes wrote:Please explain how the procedure would/could/might correct a malformed valve?

Took the not so important question out hoping you'd touch on the one, above, that i really need an answer to. My doppler revealed valve issues.. MRV no stenosis.
Just this weekend i found out that my nephew's daughter is now presenting symptoms.. she is only 20.. .. this is such crap...my heart is heavy.
Thank you.


The valves can have many different abnormalities.
1. they can have their leaflets fused, thickened, stiff
2. They can be misplaced, misoriented, misdirected
3. They can be incomplete and result in septae, duplications, webs

perhaps you can sense, that i think there is no one size fits all solution, nor do i think that all these abnormalities will have a single feature, outcome, result of treatment

Some surely will require some form of device to hold them open, such as a stent. Some will require surgery

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

My experiences with IVUS showed me that many of the narrowings are really valvular problems. These particular problems seemed to dilate well after cutting balloons. The fused valve leaflets just tear open. other valve problems just do not go away with angioplasty.

sorry about the answer, but we will solve these questions
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Postby drsclafani » Mon Jul 05, 2010 8:32 pm

Pauline wrote:Sorry just posted a question as a new topic! My question is for Dr. Sclafani!

Dr. Sclafani I'd like to ask you a couple of questions.

I had a stent put into my left IJV and there now seems to be some re-narrowing (intra-stent stenosis maybe due to intimal hyperplasia). My doctor is going to try to open the vein more again ( a different doctor to the one who did the original angioplasty for which I had to travel).
My vein had an obvious narrowing in it and when they inflated the balloon, this didn't inflate fully - looked like a couple of linked sausages (my vein was obviously resistant to being opened fully). When they put the stent in, the end appears just above the narrowing and is also kinked where the narrowing is so they didn't succeed in opening my vein fully. There was however better blood flow than originally and I truly felt the difference in my symptoms. My walking was stronger, my balance was better and my head was much clearer. Needless to say I have now lost some of my gains.

The doctor doing my procedure this time has asked me what type of balloon they used first time round. I was told they used 6 bar or 12 bar pressure for inflating the balloon during my 1st procedure (is this conventional or high pressure??) He says he has no high-pressure balloons available and is going to try with a conventional balloon.

I'm sure my IR knows exactly what he's doing but this information is to help me understand more about the whole process and to perhaps find a solution for my own vein problem. I want to be realistic about my expectations of this next procedure so I need to know in my own mind if he's likely to succeed any better than the first doctor if he uses the same balloon type & pressure, and if he proposes using the same, whether it's even worth trying.

1. If he used a high-pressure balloon, would this be more likely to open my vein fully or could this rupture the vein?
2. What is the difference between high-pressure and conventional balloons in terms of the pressure used to inflate them (bars or atm - e.g. up to how many bar is a conventional balloon pressure, then a high-pressure, then ultra-high).

I appreciate your help with this. Thank you,
Pauline[/img]


i would use a high pressure balloon. if you had a sausage appearance with a high pressure balloon, a low pressure balloon is not going to do much.

Bars are places i go after work.....i think in atmospheres. moderate balloons go up to about 8 atm. high pressure balloons can go up to 40 atm or more.
if you are narrowing at the stent, ask your doctor is you should be on anticoagulation
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Re: exact wording of doppler report

Postby drsclafani » Mon Jul 05, 2010 8:36 pm

Cece wrote:
drsclafani wrote:please tell your IR that i have written a primer in ENDOVASCULAR TODAY. It should come out next month.

He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY.

So much going on! This is great. :D


The Departments of Radiology and Neurology of SUNY Downstate Medical School are pleased to sponsor a symposium on the treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) on Monday July 26 at 9am in the Alumni Hall of Downstate's Educational Building.

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction. The association of CCSVI with Multiple Sclerosis has been described and confirmed. Treatment by venous angioplasty was reported by Paolo Zamboni in the Journal of Vascular Surgery in January 2010 and clinical trials have begun in the United States and elsewhere.

We are pleased that Dr Fabrizio Salvi, Dr. Zamboni's neurologist partner, will attend this meeting. Also reporting their experience will be Tariq Sinan, the interventionalist who leads the Kuwaiti National Trial, Gary Siskin of the Albany Medical Center and Salvatore JA Sclafani of Downstate.

The goals of this conference will be to review the concept of CCSVI, ,to illustrate the various imaging modalities and to describe the techniques and challenges of the procedure.

The audience is encouraged to bring Powerpoint presentations of interesting or challenging cases to share with the audience during our final session.

The seminar will occur on July 26 beginning at 9 am. There will be no charge for registration

Please email me at CCSVISymposium@gmail.com if you plan to attend so that I can reserve you space.

-------------------------

PLEASE SHARE WITH YOUR INTERVENTIONALISTS. I SUSPECT THAT THERE WILL BE SOME SPACE FOR PATIENTS AND THEIR CAREGIVERS, BUT LETS HOLD OFF ON THAT FOR WHILE.
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Postby drsclafani » Mon Jul 05, 2010 8:40 pm

newlywed4ever wrote:Dr S wrote: "i retract my apology....somehow, not sure how i corrected things, but the picture is now visible"
Serendipity!! You chose to correct the ignorance - and you did without knowing exactly how.
Dr S - I have a confession to make. I was willing to wait for you but have now chosen the first doc to make a serious commitment. My daughter and I have appts 8/5. Can we stay on your list in case there is restenosis? Or is this ethically wrong?


We each have our ethics. You have control of your bodies, no one else. You can choose the doctors who treat you, you can get multiple opinions, you can refuse treatment, you can ask as many questions as you need to be an informed patient.

Thank you for sharing with me. I am very sorry that i am stymied. Perhaps it is my calling to write primers and put on symposia
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Postby PCakes » Mon Jul 05, 2010 9:25 pm

drsclafani wrote:
...we will solve these questions


Thank you..
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Postby Cece » Mon Jul 05, 2010 9:52 pm

drsclafani wrote:Thank you for sharing with me. I am very sorry that i am stymied. Perhaps it is my calling to write primers and put on symposia

There is also the important work you do here, educating and encouraging.

But I hope for more for you as well.
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