This Is MS Multiple Sclerosis Community: Knowledge & Support

alex, thanks for the followup, but please provide followup via ccsviliberation@gmail.com because it enables me to readily access records. in this overly long forum, searching for results does not come as easily.

the valve is visible when it is thickened. otherwise the valve is just a layer of endothelium and some collagen matrix. It is "gossamer". on ultrasound of normal veins we rarely see such thickening except at the annulus. I think that angioplasty may stretch the vein enough to make it very thin and "gossamer" .

unless some of my patients are willing to donate their bodies, which i hope is not the case, then speculation remains the ansswer.

i do not worry about loss of the vein unless their are symptoms. I have read that as many as 15% of humans do not have valves discovered in the jugular vein.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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.

Welcome back Doc!

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

Hi doc,

You've said:


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

Rgds,

Robert

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

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

‎"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

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

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

NHE

here's a quote from Dr. Sclafani from 2010

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.

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

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?

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com