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 » Thu Sep 06, 2012 2:28 pm

NZer1 wrote:Welcome back Dr. .
Happens to be best and the worst of us, haha!

Paul Thibault may have some insight to the CPn and CCSVI appearances, I'll ask him.

**Can you explain what is dramatic or definite when 'you' see Lyme or CPn?

**Is there a difference between these two?

There may be a situation where the Aust and NZ CCSVI PwMS have a percentage of CPn and Lyme cases that the Northern Latitude doesn't?


nigel, lyme is endemic in many parts of the northeastern US.

a picture is worth a thousand words, and i have not seen a thousand cases of lymes, but here goes.

the thickening of the valve is greater in lyme. it is more echogenic and more diffuse than in ccsvi.
the valve in ccsvi is stiffer. the valve in lyme is not under as much tension and is quite floppy. Also the vein is stiffer in cccsvi. the veins in lymes are quite compliant and dilate tremendously with valvsalva.

i must get those comparative images up on this site.
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Re: DrSclafani answers some questions

Postby Cece » Thu Sep 06, 2012 2:59 pm

Glad that you are taking breaks, even though you are missed.
It's very interesting to hear that there may be a distinct presentation of how the valve looks in Lyme's patients.
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Re: DrSclafani answers some questions

Postby Robnl » Thu Sep 06, 2012 9:56 pm

Welcome back Doc!
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Re: DrSclafani answers some questions

Postby NZer1 » Thu Sep 06, 2012 10:10 pm

drsclafani wrote:
NZer1 wrote:Welcome back Dr. .
Happens to be best and the worst of us, haha!

Paul Thibault may have some insight to the CPn and CCSVI appearances, I'll ask him.

**Can you explain what is dramatic or definite when 'you' see Lyme or CPn?

**Is there a difference between these two?

There may be a situation where the Aust and NZ CCSVI PwMS have a percentage of CPn and Lyme cases that the Northern Latitude doesn't?


nigel, lyme is endemic in many parts of the northeastern US.

a picture is worth a thousand words, and i have not seen a thousand cases of lymes, but here goes.

the thickening of the valve is greater in lyme. it is more echogenic and more diffuse than in ccsvi.
the valve in ccsvi is stiffer. the valve in lyme is not under as much tension and is quite floppy. Also the vein is stiffer in cccsvi. the veins in lymes are quite compliant and dilate tremendously with valvsalva.

i must get those comparative images up on this site.


Any insights to CPn, I have done allot of reading on this recently and it may have some answers to some issues, eg restenosis.
When it is in the vasculitus stage it could be a problem with healing after PTA. If it gets across the BBB as an intracellular disease it could account for many symptoms, and there is the added immune system overload that occurs and causes extra symptoms, independent of the primary problem.

People have improved symptomatically from antibiotic treatments after having several PTA's prior, not everyone!

An easy blood test, with challenges to get a good lab for accurate results for each of your patients as a guide, that may answer some questions on re-stenosis!

Food for thought, the IVUS detection of issues defining CPn effects on veins/CCSVI on someone with positive blood test would help the world!
Oh that's right, I have CPn and want to travel :)

Regards,
Nigel
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Re: DrSclafani answers some questions

Postby Robnl » Fri Sep 07, 2012 3:02 am

Hi doc,

You've said:
I continue blood thinners after stenting for a minimum of six months.


I've got a stent and should use Ascal for life....are you suggesting this is not neccessary??

Rgds,

Robert
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Re: DrSclafani answers some questions

Postby Lety » Fri Sep 07, 2012 3:51 am

drsclafani wrote:
Lety wrote:hello to everyone here in the forum and in particular to Prof. Sclafani, I am new here but read you for a long time (I'm sorry my English is not so good, I'm from Germany, hope you understand me anyway).

Prof. Sclafani, as you know I'm interested in a treatment, I am plagued by uncertainties, unfortunately, that's why I could not decide yet.

Can you please tell me how high the risk of complications from a stent is (you had cases in which stents were used and it still came to restenosis?)

Then you have to take blood thinners for life?

Is it according to your experience that problems with legs, bladder, bowel are associated with Problem to the Azygosvein?

Thank you in advance for your answer.

Best Regards

Lety


I do not put many stents in. I think that IVUS directed large balloon high pressure dilatation is usually sufficient to open these veins for more than six months. the stents I have put in have been to bale out vein wall dissections that put the vein at risk for thrombosis. Approximately 1/3 of the stents I have placed (not many) in such circumstances have developed intimal hyperplasia that has persisted up to one year. Most of the intimal hyperplasia has stabilized or partially or completely subsided.
However other stents have been placed for restoration of occlusions, mostly resulting from treatments by other physicians. These do not do as well, with some developing severe intimal hyperplasia and at least one going on to complete occlusion. That was frustrating case, as it was a very long very heroic technical tour de force requiring rendevous procedure stenting, etc. in a patient who had bilateral occlusion after prior angioplasty in another country.

I continue blood thinners after stenting for a minimum of six months. I Decide subsequently based upon ultrasound whether to continue anticoagulation.

I believe that the jugular veins, the azygous vein, the ascending lumbar vein, the dural sinuses and the vertebral veins all contribute to the cerebrospinal venous circulation. Treatment of any and all of these veins can impact on patient clinical outcomes

S

Hallo Prof. Sclafani, thank you for your answer

you wrote
IVUS directed large balloon high pressure dilatation is usually sufficient to open these veins for more than six months,
this is not a long time, and unfortunately I live too far away from you in order to make a follow-up and re-treatment unfortunately would not be possible for cost reasons

I wrote you an email prior to your vacation, would be nice if you could answer me, if your time permits (understand that you now have to make up some work)

Wish you all the best

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Re: DrSclafani answers some questions

Postby NZer1 » Fri Sep 07, 2012 12:45 pm

Hi Dr,
if PTA is lasting about six to twelve months isn't that time frame the same as Vasculitis infection time frame quoted for bacterial and viral infections to establish (and probably exacerbate, the quoted time for CPn is about two yearly flair ups depending on conditions) , interlinked?

Regards,
Nigel
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Re: DrSclafani answers some questions

Postby NZer1 » Sat Sep 08, 2012 12:01 am

‎"It is suggested that where spinal MS has been diagnosed from clinical observations, patients should be referred for angiological investigation to search for dural arteriovenous fistulas (DAVFs) within the head to identify any treatable subjects."

Raised venous pressure as a factor in multiple sclerosis
http://www.sciencedirect.com/science/ar ... 7707006159

I like the thought processing here, the difference for me is that the breach of BBB may be allowing CPn or Lyme or another antagonist across the BBB, that needs to be defined!

Regards,
Nigel
Last edited by NZer1 on Sun Sep 09, 2012 8:01 pm, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby NZer1 » Sat Sep 08, 2012 1:28 pm

From Mike Arata
Over the last month we have preformed ANS testing before and after CCSVI treatment. Review of 24 cases reveals improvement in 2/3 of patients. That's objective evidence of a response to treatment.
https://www.facebook.com/groups/vagasne ... ment_reply
Bobby D. O'Toole created a doc.
Dysautonomia (Autonomic Dysfunction)
Dis-auto-nome-e-ia
Dysautonomia (or autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). (see definition of ANS under "Files")
The autonomic nervous system controls a number of functions in the body, such as heart rate, blood pressure, digestive tract peristalsis, sweating, amongst others. Dysfunction of the ANS can involve any of these functions.
The symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person's quality of life. Each patient with dysautonomia is different—some are affected only mildly, while others are left completely bed-ridden and disabled.
http://en.wikipedia.org/wiki/Dysautonomia
Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body.
http://www.dinet.org/
 
In laymen's terms... The functions of your body, that happen "automatically", are not working properly.

From; https://www.facebook.com/groups/vagasne ... ment_reply
Last edited by NZer1 on Sun Sep 09, 2012 1:19 am, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby NHE » Sat Sep 08, 2012 11:34 pm

NZer1 wrote:Over the last month we have preformed ANS testing before and after CCSVI treatment. Review of 24 cases reveals improvement in 2/3 of patients. That's objective evidence of a response to treatment.
https://www.facebook.com/groups/vagasne ... p_activity


NZer1 wrote:In laymen's terms... The functions of your body, that happen "automatically", are not working properly.

From; https://www.facebook.com/groups/vagasne ... p_activity


Hi NZer1,
Please see this post in the forum's FAQ thread to understand why the links you've posted don't work.
site-support-f2/topic5284-15.html#p197371

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Re: DrSclafani answers some questions

Postby Cece » Sun Sep 09, 2012 1:31 pm

NZer1 wrote:From Mike Arata
Over the last month we have preformed ANS testing before and after CCSVI treatment. Review of 24 cases reveals improvement in 2/3 of patients. That's objective evidence of a response to treatment.
https://www.facebook.com/groups/vagasne ... ment_reply

here's a quote from Dr. Sclafani from 2010
drsclafani wrote:
PCakes wrote:Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes


The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function

The 'somehow' is the question. It would be nice to know exactly how but it is also nice to have evidence of the improvement as Dr.Arata is seeing. Thanks for the link, Nigel.
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Re: DrSclafani answers some questions

Postby NZer1 » Sun Sep 09, 2012 3:22 pm

More on arteriovenous fistulae via Alison Fisher: "The venous system of the spinal cord is important for several reasons. First and foremost, venous drainage is an important determinant of blood flow. Compromise of venous flow may result in delayed ischemia of the spinal cord. Second, enlarged veins are the primary manifestation of arteriovenous malformations where an artery is abnormally connected to a vein. When this happens the veins become enlarged and tortuous with a corkscrew pattern. The veins may become so massive that they cause spinal cord compression. More important, the arteriovenous malformation steals blood from the spinal cord, making it ischemic."
"The anatomy of the spinal arterial and venous systems explain many of the symptoms and causes of spinal cord ischemia, a condition that affects thousands of people world wide. For example, one of the most important causes of spinal cord ischemia is occlusion of the aorta, the primary source of blood flow to the thoracic and lumbar spinal cord. A recent study suggests that the lumbosacral spinal cord is sensitive to prolonged periods of very low blood pressure. The anterior spinal artery, a thin and tortuous artery, supplies over 50% of the blood flow to the lower cervical and thoracic spinal cord; this artery is vulnerable to occlusion and inflammation."
http://sci.rutgers.edu/index.php?page=v ... hemia.html

CPn could make the veins problematic/enlarged

Thoughts?
Nigel
Last edited by NZer1 on Sun Sep 09, 2012 8:05 pm, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Sep 09, 2012 7:23 pm

Robnl wrote:Hi doc,

You've said:
I continue blood thinners after stenting for a minimum of six months.


I've got a stent and should use Ascal for life....are you suggesting this is not neccessary??

Rgds,

Robert

Robert
ascal is not a blood thinner. It is an antiplatelet drug that inhibits the aggregation of platelets. This is very different from a blood thinner, a term i would use for an anticoagulant, such as coumadin or pradaxa.
I was not referring to asprins, such as aspirin and ascal

why are you using ascal rather than aspirin?
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Sep 09, 2012 7:28 pm

Lety wrote:
drsclafani wrote:
Lety wrote:hello to everyone here in the forum and in particular to Prof. Sclafani, I am new here but read you for a long time (I'm sorry my English is not so good, I'm from Germany, hope you understand me anyway).

Prof. Sclafani, as you know I'm interested in a treatment, I am plagued by uncertainties, unfortunately, that's why I could not decide yet.

Can you please tell me how high the risk of complications from a stent is (you had cases in which stents were used and it still came to restenosis?)

Then you have to take blood thinners for life?

Is it according to your experience that problems with legs, bladder, bowel are associated with Problem to the Azygosvein?

Thank you in advance for your answer.

Best Regards

Lety


I do not put many stents in. I think that IVUS directed large balloon high pressure dilatation is usually sufficient to open these veins for more than six months. the stents I have put in have been to bale out vein wall dissections that put the vein at risk for thrombosis. Approximately 1/3 of the stents I have placed (not many) in such circumstances have developed intimal hyperplasia that has persisted up to one year. Most of the intimal hyperplasia has stabilized or partially or completely subsided.
However other stents have been placed for restoration of occlusions, mostly resulting from treatments by other physicians. These do not do as well, with some developing severe intimal hyperplasia and at least one going on to complete occlusion. That was frustrating case, as it was a very long very heroic technical tour de force requiring rendevous procedure stenting, etc. in a patient who had bilateral occlusion after prior angioplasty in another country.

I continue blood thinners after stenting for a minimum of six months. I Decide subsequently based upon ultrasound whether to continue anticoagulation.

I believe that the jugular veins, the azygous vein, the ascending lumbar vein, the dural sinuses and the vertebral veins all contribute to the cerebrospinal venous circulation. Treatment of any and all of these veins can impact on patient clinical outcomes

S

Hallo Prof. Sclafani, thank you for your answer

you wrote
IVUS directed large balloon high pressure dilatation is usually sufficient to open these veins for more than six months,
this is not a long time, and unfortunately I live too far away from you in order to make a follow-up and re-treatment unfortunately would not be possible for cost reasons

I wrote you an email prior to your vacation, would be nice if you could answer me, if your time permits (understand that you now have to make up some work)

Wish you all the best

Lety


Please resend your email.

Long distance travel is not one of my indications for stenting.

I want to make it clearer. I think that restenosis is not as common as is imagined. I have reviewed many cases that have had angioplasty more than two years ago with pretty decent diameters two years later, although the valves are incompletely opened. I think underdilatation probably leads to more situations that are interpreted as restenosis.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Sep 09, 2012 7:33 pm

NZer1 wrote:Hi Dr,
if PTA is lasting about six to twelve months isn't that time frame the same as Vasculitis infection time frame quoted for bacterial and viral infections to establish (and probably exacerbate, the quoted time for CPn is about two yearly flair ups depending on conditions) , interlinked?

Regards,
Nigel


I am far from convinced that these lesions are infectious. I think they are congenital. I think that most of what is called restenosis is probably inadequate dilatation.
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