DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby drsclafani » Tue Mar 06, 2012 10:47 pm

NormB wrote:Greetings Dr Sclafani and all,
Sorry if this post might be offtrack but I have this idea that keeps bugging me for its possibility. Since it seems to be a fact that blood flows in the jugulars are restrained somewhat by either valves or stenonis, why can't one have a
miniature blood pump installed at the highest point possible on the main jugular vein?
To be more explicit the pump would draw blood from the brain and assist the heart with
just enough pressure as to not impede the main heart valve function or it could pulsate like
the heart when it feels the small pressure from the brain vein. The pressure from the pump could circumvent the valves and inflate the stenosed vein. Am I out of logic with this approach?
I know this is explained in a very simplistic way and I am not medically inclined but I
have some experience in pumping fluids and seen similar with water pumps.
Another thing the pump would obviously have a backflow valve. Maybe being setup
in an OR environment with an exterior pump for a certain time (a week?) might shape the valves and or the stenosed veins back to their proper or original setting.

I know it is very off the track but just thinking aloud for the experts to entertain the possibilities.

Btw sorry for my thinking in french and writing in english.

Take Care All

Norm


norm, being in love means never having to say you are sorry.

this is the thing of the future. hopefully we can figure out how to keep veins open, valves functioning
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 07, 2012 10:21 am

Cece wrote:ok, ok...

In the case from the stents thread that you started, did the patient have any relief of symptoms after being treated for the renal stenosis?


actually she doesnt feel so good. not sure what the problem is, fatigue from the long trip? skipping copaxone for more than a week? a relapse? an infection picked up while traveling?

we shall see
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Re: DrSclafani answers some questions

Postby Cece » Wed Mar 07, 2012 12:19 pm

drsclafani wrote:
Cece wrote:ok, ok...

In the case from the stents thread that you started, did the patient have any relief of symptoms after being treated for the renal stenosis?


actually she doesnt feel so good. not sure what the problem is, fatigue from the long trip? skipping copaxone for more than a week? a relapse? an infection picked up while traveling?

we shall see

All best wishes to her to be feeling better soon.
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Re: DrSclafani answers some questions

Postby msfire » Wed Mar 07, 2012 6:51 pm

NZer1 wrote:Sal there is some info on the Wheldon site and, and, he is not saying that it is 'THE' cause of MS. He is however saying that some examples benefit from this approach.
The bottom line on the bacteria issue imo is not that the vein walls are infected and causing the breach, the pumping/refluxing of CCSVI at the capillary beds is getting a bacteria across which then causes the symptoms in the infected CNS and remains after PTA treatment and still causes symptoms in those infected, not the entire MS population, maybe 30% is being found.
The bacteria damage to the vein walls 'may' only be a possible reason in 'some' virus cases, for some restenosis examples after PTA in areas where there is no valve or malformation present and the stretch of PTA on a stenosed vein is exposing the healthy wall to a bacteria, causing inflammation, and so on. Again this is a work in progress to present the supporting evidence and do the publications.

There are many things that are having an effect, as you are finding, there will likely be 10 or more ways that CCSVI evolves into the symptom group MS, and other Diseases. Such as Dr Flanagan's work! MRI studies of CSF flows and so on.
All I am saying is that there is merit in this approach and in addition Paul Thibault is working on the paper (his second) regarding his results that is due soon.
The number of PwMS and other diseases with a bacteria issue, CCSVI and needing PTA was about 30% from memory which ironically fits near some PTA nonresponder (or restenosis) outcome figures, long shot, hell yeah!
And Paul's paper will support the bacteria findings.

Finding that I am viral is prompting me to travel to Australia and see about a Zamboni Doppler (nearest place with a Zamboni trained person) and then treat the infection before coming to NYC and check your reputation!

Regards Nigel

When you meet the man in person you won't walk away the same person. Dr. Sal would be my first nomination to a CCSVI "dream team" among a few others that we all know.
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Re: DrSclafani answers some questions

Postby Cece » Thu Mar 08, 2012 4:19 pm

http://www.sirmeeting.org/index.cfm?do= ... Ev&ev=2575
Mon, 3/26: 8:00 AM - 10:00 AM
0318 Workshop WK 18 Moscone Center Room: 302

This workshop will use a case-based interactive format to expose participants to Chronic Cerebrospinal Venous Insufficiency. CCSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty. The workshop speakers will describe clinical presentations, explain their pre-procedural evaluations and preparations and elaborate on the criteria they use to decide which patients might benefit from the procedure. Each presenter will illustrate and explain the techniques that they use to image and treat obstructions and define the end points of their treatments. Finally they will discuss follow-up schema. The types of cases discussed will include the following: Routine uncomplicated cases that illustrate the key components of each speaker's techniques; cases that reveal nuances in technique of each speaker; misdiagnoses, technical errors and complications; "re-do" and "bailout" procedures.

Objective

Upon completion of the session, the learner should be able to:
1.Describe the pathology and pathophysiology, and clinical presentation of CCSVI
2. Describe the various screening, diagnostic and surveillance approaches to CCSVI
3. Recognize the venographic appearances of CCSVI and formulate a strategy for their detection
4. Develop a coherent and effective treatment strategy
5. Recognize, reduce and treat complications of treatment

Coordinator(s)
Professor Salvatore Sclafani, MD, FSIR, American Access Care - View Disclosure - Contact Me

Speaker(s)
Dr. Bulent Arslan, MD, Moffitt Cancer Center & Research Institute - View Disclosure - Contact Me
Dr. Michael Cumming, MD, FRCP(C), MBA, Hennepin Faculty Associates - View Disclosure - Contact Me
Dr. Hector Ferral, MD, North Shore University Health System - View Disclosure - Contact Me
Dr. Donald Ponec, MD, FSIR, Tri-City Medical Center - View Disclosure - Contact Me

Educational Pathways

Neurovascular and Carotid Interventions

Venous Interventions

Will there be any way for us patients to see any of this? Or to hear about the highlights?
It's great to see Dr. Cumming as a speaker, and Dr. Ferral and Dr. Arslan and Dr. Ponec! I do not know enough about the nuances of their techniques, other than Dr. Cumming using intravascular ultrasound during the procedure and Dr. Ponec using MRI for pre-imaging.
I bolded what must be the latest definition of CCSVI as a clinical syndrome resulting from outflow resistance with the above-listed symptoms (and no mention of MS).

Two hours full of cases, which is the best way to learn. Wish I were there.
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Re: DrSclafani answers some questions

Postby WeWillBeatMS » Thu Mar 08, 2012 8:50 pm

Dr. Sclafani, now that you've checked out my veins and with the exception of the borderline valve issue you saw with my azygos I showed no signs of CCSVI, I have been hanging out on the CPn Help.org website. I am driving about 8 hours tomorrow to see a doctor up in the panhandle of Florida that treats the chlamydophila pneumoniae using the combined antibiotic protocol that Dr. Stratton of Vanderbilt and Dr. Wheldon of UK developed several years ago. I wanted to ask you what you think of the possibility that this shifty little bacteria could in fact be the cause of many diseases like MS for example? And my follow up question is do you know of a physician in Brooklyn or other part of NYC that treats using this CAP? I spoke to someone who is going to start treating himself with the antibiotics that they've ordered online and wants a physician to guide him. There is a serious shortage of doctors who will stick their necks out to treat using this protocol and yet there are many who have been helped greatly from it. Always like to read your two cents.

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Re: DrSclafani answers some questions

Postby drsclafani » Sun Mar 11, 2012 5:12 am

Cece wrote:http://www.sirmeeting.org/index.cfm?do=ev.viewEv&ev=2575
Mon, 3/26: 8:00 AM - 10:00 AM
0318 Workshop WK 18 Moscone Center Room: 302

This workshop will use a case-based interactive format to expose participants to Chronic Cerebrospinal Venous Insufficiency. CCSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty. The workshop speakers will describe clinical presentations, explain their pre-procedural evaluations and preparations and elaborate on the criteria they use to decide which patients might benefit from the procedure. Each presenter will illustrate and explain the techniques that they use to image and treat obstructions and define the end points of their treatments. Finally they will discuss follow-up schema. The types of cases discussed will include the following: Routine uncomplicated cases that illustrate the key components of each speaker's techniques; cases that reveal nuances in technique of each speaker; misdiagnoses, technical errors and complications; "re-do" and "bailout" procedures.

Objective

Upon completion of the session, the learner should be able to:
1.Describe the pathology and pathophysiology, and clinical presentation of CCSVI
2. Describe the various screening, diagnostic and surveillance approaches to CCSVI
3. Recognize the venographic appearances of CCSVI and formulate a strategy for their detection
4. Develop a coherent and effective treatment strategy
5. Recognize, reduce and treat complications of treatment

Coordinator(s)
Professor Salvatore Sclafani, MD, FSIR, American Access Care - View Disclosure - Contact Me

Speaker(s)
Dr. Bulent Arslan, MD, Moffitt Cancer Center & Research Institute - View Disclosure - Contact Me
Dr. Michael Cumming, MD, FRCP(C), MBA, Hennepin Faculty Associates - View Disclosure - Contact Me
Dr. Hector Ferral, MD, North Shore University Health System - View Disclosure - Contact Me
Dr. Donald Ponec, MD, FSIR, Tri-City Medical Center - View Disclosure - Contact Me

Educational Pathways

Neurovascular and Carotid Interventions

Venous Interventions

Will there be any way for us patients to see any of this? Or to hear about the highlights?
It's great to see Dr. Cumming as a speaker, and Dr. Ferral and Dr. Arslan and Dr. Ponec! I do not know enough about the nuances of their techniques, other than Dr. Cumming using intravascular ultrasound during the procedure and Dr. Ponec using MRI for pre-imaging.
I bolded what must be the latest definition of CCSVI as a clinical syndrome resulting from outflow resistance with the above-listed symptoms (and no mention of MS).

Two hours full of cases, which is the best way to learn. Wish I were there.

Dr Ponec has opted out and will not be at this event.
I chose Drs Cummings, Ferral and Arslan as early adopters with courage and vision. Dr Cummings and Dr Ferral are firm adherents to the use of IVUS. I am interested to see how our approaches to IVUS have independently evolved. I chose Dr Arslan for his belief that IVUS is unnecessary. Should be lively.

Cece, as you can imagine, that is my definition. While most of my patients suffer from MS, there are some who do not. I wanted to focus on the syndrome rather than MS. The merger of the two entities has caused enough troubles
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Re: DrSclafani answers some questions

Postby munchkin » Sun Mar 11, 2012 8:08 am

Hi Dr.S

Happy belated Birthday

Have you heard of/or used double walled balloons that allow the blood to flow while ballooning? Is this something that could be used on those patients with one completely blocked jugular to prevent reflux?

Thanks
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Mar 11, 2012 10:00 am

WeWillBeatMS wrote:Dr. Sclafani, now that you've checked out my veins and with the exception of the borderline valve issue you saw with my azygos I showed no signs of CCSVI, I have been hanging out on the CPn Help.org website. I am driving about 8 hours tomorrow to see a doctor up in the panhandle of Florida that treats the chlamydophila pneumoniae using the combined antibiotic protocol that Dr. Stratton of Vanderbilt and Dr. Wheldon of UK developed several years ago. I wanted to ask you what you think of the possibility that this shifty little bacteria could in fact be the cause of many diseases like MS for example? And my follow up question is do you know of a physician in Brooklyn or other part of NYC that treats using this CAP? I spoke to someone who is going to start treating himself with the antibiotics that they've ordered online and wants a physician to guide him. There is a serious shortage of doctors who will stick their necks out to treat using this protocol and yet there are many who have been helped greatly from it. Always like to read your two cents.

WeWillBeatMS


Let me ask around to see if anyone is involved. I know a few ID doctors.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Mar 11, 2012 10:05 am

munchkin wrote:Hi Dr.S

Happy belated Birthday

Have you heard of/or used double walled balloons that allow the blood to flow while ballooning? Is this something that could be used on those patients with one completely blocked jugular to prevent reflux?

Thanks


thanks. I have designed balloons such as this for a very different purpose, as temporary sealers of holes in the wall of blood vessels while still allowing blood to be delivered beyond the balloon. I dont think that such a balloon is a permanent option. Moreover the use of such a balloon for angioplasty is probably not going to work either.
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Re: DrSclafani answers some questions

Postby Cece » Sun Mar 11, 2012 10:18 am

drsclafani wrote:
munchkin wrote:Hi Dr.S

Happy belated Birthday

Have you heard of/or used double walled balloons that allow the blood to flow while ballooning? Is this something that could be used on those patients with one completely blocked jugular to prevent reflux?

Thanks


thanks. I have designed balloons such as this for a very different purpose, as temporary sealers of holes in the wall of blood vessels while still allowing blood to be delivered beyond the balloon. I dont think that such a balloon is a permanent option. Moreover the use of such a balloon for angioplasty is probably not going to work either.

You must have used it in trauma care, to deal with hemorrhaging? Huh! A smart solution. But for CCSVI, would the problem with such a balloon be that it would not be a high pressure balloon?

I had one jugular fully blocked, and the other jugular mostly blocked, and the mostly blocked one was ballooned first, which is just the scenario where a balloon that still allowed flow through would be useful. But you can also keep the duration of the ballooning shorter as well.
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Re: DrSclafani answers some questions

Postby pklittle » Sun Mar 11, 2012 11:08 am

drsclafani wrote:
Cece wrote:ok, ok...

In the case from the stents thread that you started, did the patient have any relief of symptoms after being treated for the renal stenosis?


actually she doesnt feel so good. not sure what the problem is, fatigue from the long trip? skipping copaxone for more than a week? a relapse? an infection picked up while traveling?

we shall see


hi DrS,

I haven't been here in a while. Where is the stent thread?
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Mar 12, 2012 3:01 pm

Cece wrote:
drsclafani wrote:
munchkin wrote:Hi Dr.S

Happy belated Birthday

Have you heard of/or used double walled balloons that allow the blood to flow while ballooning? Is this something that could be used on those patients with one completely blocked jugular to prevent reflux?

Thanks


thanks. I have designed balloons such as this for a very different purpose, as temporary sealers of holes in the wall of blood vessels while still allowing blood to be delivered beyond the balloon. I dont think that such a balloon is a permanent option. Moreover the use of such a balloon for angioplasty is probably not going to work either.

You must have used it in trauma care, to deal with hemorrhaging? Huh! A smart solution. But for CCSVI, would the problem with such a balloon be that it would not be a high pressure balloon?

I had one jugular fully blocked, and the other jugular mostly blocked, and the mostly blocked one was ballooned first, which is just the scenario where a balloon that still allowed flow through would be useful. But you can also keep the duration of the ballooning shorter as well.


I leave balloons inflated for very short durations. i dont understand why one would leave it inflated for minutes. I think that the proposed balloon would not have sufficient radial force to open the lesions of ccsvi
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Mar 12, 2012 3:05 pm

pklittle wrote:
drsclafani wrote:
Cece wrote:ok, ok...

In the case from the stents thread that you started, did the patient have any relief of symptoms after being treated for the renal stenosis?


actually she doesnt feel so good. not sure what the problem is, fatigue from the long trip? skipping copaxone for more than a week? a relapse? an infection picked up while traveling?

we shall see


hi DrS,

I haven't been here in a while. Where is the stent thread?



chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19330.html
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Re: DrSclafani answers some questions

Postby THEGREEKFROMTHED » Mon Mar 12, 2012 6:11 pm

Many patients complain of l'hermittes upon the chin to the chest. I dont get shocks but rather the stiffness increases momentarily in my lega and also the power is decreased. Can you see any possible venous connection to this phenomenon? Or could it just be excess gabagool lodged in my neck?
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