This Is MS Multiple Sclerosis Knowledge & Support Community

drsclafani wrote:Perhaps i have not clearly described how important I think the case that i have shown is. In my book it is a smoking gun, a veritable proof that venous obstructions cause symptoms in the absence of prior neurological disease. In essence what has been described is the acute volume overload of the cerebrospinal circuits resulting in neurological symptoms that respond just as as fast as they developed by improvement in venous outflow.

This patient has NO MS, has No neurological disease, No evidence of demyelination. In fact while her ccsvi venous pathology is similar to that of anyone else who has ccsvi, it did not cause symptoms until flow was increased by occluding the ovarian vein and shunting the blood into the cerebrospinal circui and it resolved as soon as angioplasty of the jugulars and stenting of the renal vein was accomplished.

in other words, it is its own symptom complex

Now I know what happens if we ever miss the point. It gets bolded for us.

I had thought about the ways in which your colleagues might be resistant to some of your ideas demonstrated in this case
* interrogating the dural sinus
* treating a patient without an MS diagnosis
* considering renal stenosis as contributory to ccsvi
* considering IVUS essential to diagnosis and treatment

I recently heard from someone with Lyme disease who could not get her closest CCSVI doctor to test her for CCSVI because she did not have MS, and he is only treating MS patients.

For CCSVI to have its own symptom complex is very significant. Does this case demonstrate such? There are those who dispute that the renal vein stenosis is affecting the cerebrospinal drainage, but I think that has been shown logically and through images of flow going into the ascending lumbars and hemiazygous.

If my CCSVI symptoms were called MS, and my CCSVI has now been treated and those symptoms are gone, what becomes of my MS?

drsclafani wrote:Perhaps i have not clearly described how important I think the case that i have shown is. In my book it is a smoking gun, a veritable proof that venous obstructions cause symptoms in the absence of prior neurological disease. In essence what has been described is the acute volume overload of the cerebrospinal circuits resulting in neurological symptoms that respond just as as fast as they developed by improvement in venous outflow.

This patient has NO MS, has No neurological disease, No evidence of demyelination. In fact while her ccsvi venous pathology is similar to that of anyone else who has ccsvi, it did not cause symptoms until flow was increased by occluding the ovarian vein and shunting the blood into the cerebrospinal circui and it resolved as soon as angioplasty of the jugulars and stenting of the renal vein was accomplished.

in other words, it is its own symptom complex

Then maybe there should be some kind of medical consensus that renames ccsvi to "ccsvi syndrome" ?Maybe this could solve some major issues..

drsclafani wrote:

NZer1 wrote:So let me put it back to you this way Sal,

What diseases have 'CCSVI' in common, such as MS, that come to your door?

Do we have a situation where the whole dx system/structure/assessment/understanding needs to be re-evaluated?

Who can help with this?

Neurology needs to get off their auto-immunity horse, Vascular Specialists need to make a stand and everyone needs smell the roses that you are offering?

Enjoy your weekend, mine has started in this part of the world,
Nigel

Nigel,
The overwhelming majority of the patients who have ccsvi due to venous obstructions are patients who have been given a diagnosis of multiple sclerosis. I think that many of these patients have symptoms that are due to ccsvi, but when that symptom complex has been detected, the natural assumption has been that those symptoms are due to MS. This is neither surprising nor unreasonable if one never knew that there actually were obstructions of the veins.

Sort of analogous to a 15th Century peasant concluding that the disappearance of a ship crossing the atlantic was caused by that ship falling off a flat earth. If you thought the earth was flat, that would be a very logical conclusion.

This case shows very clearly that a patient with these symptoms can exist without any neurological disease.

*Again Sal, I ask from another angle, if a patient has "CCSVI syndrome" removed by PTA what disease is left?

*Is there such a thing as MS?

*Is MS a dx that needs to be re-evaluated because without "CCSVI syndrome" there is no MS?

Food for Neurologists in particular to pay attention to! If this pans out in the manor I have laid out then are going to be some very red faced MS specialists and Neuro's in general.

From that angle the angst that CCSVI is getting from Neurology and the Pharmaceutical industry is very easy to understand. There is allot at stake here team!

EGO and money two of the most powerful and DANGEROUS motivators on the Planet!

Regards Nigel

What is the FIRST thing you learn about MS ?

A: It is often called-labeled as ........ " The Great Imitator"

Every doctor and medical professional everywhere ..... should start their day with this daily reminder. In today's medical world ..... there is no excuse for instant and incorrect
medical labels being attached to sick people. Do your homework. Keep an open mind.

Is that asking too much ?



MrSuccess

pelopidas wrote:

msfire wrote:Sorry for going off topic, does anyone know Dr .Sal's facebook page? Thank you all.

http://www.facebook.com/Sal.Sclafani.MD

Thank you very much

Hi Dr. Sclafani, long time no speakie. I'm still searching for answers outside the MS "diagnosis" that was handed to me six years ago based on MRIs alone. Am I still the only patient diagnosed with MS without CCSVI when you went in with your rotorooter?

pc

One of tomorrow morning's consensus breakout sessions:
8:30am-10:00am Establishing Catheter venography and IVUS imaging standards (Salvatore Sclafani, USA)
10:50am-11:10am Summary of the consensus on catheter venography and IVUS (Salvatore Sclafani, USA)

Knock 'em dead! Then come tell us about it! Did you send out that survey to interventionalists? Is the use of IVUS catching on?

Interesting comment about IVUS Cece,
I had a talk with a Phlebologist / MS specialist in Australia who said,
"I think the reason why IVUS has not taken off in Aus/NZ is realted to lack of interest by the interventional radiologists in ultrasound in general. CCSVI is probably one of the few areas where it has much application. It was initially introduced into general phlebology about 20 years ago by Pauline Raymond-Martimbeau, but never took off."

It seems the push by Sal is going to need help beyond benefit as the old school are likely to be the un-skilled and therefore resistant.

Nigel

There's a PREMise study (Buffalo) on IVUS being presented a few days from now at ISNVD. Let's see...

ABSTRACT "Intravascular Ultrasound for detection of azygous and internal jugular vein (IJV) abnormalities as part of the PREMiSe (Prospective Randomized Endovascular Therapy in Multiple Sclerosis) study" (Yuval Karmon, USA)

In Japan, ivus is fully reimbursed, and it gets high usage. Insurance companies could do a lot for ivus, if they saw studies supporting its use. With ccsvi, the problem also might be that the IRs are not used to thinking of jugulars as being as precious as they are. There is too much at stake for us.

WeWillBeatMS, good to see you back, although I wish you had a clearer diagnosis.

Maybe the Insurance Co's will drive the use of IVUS?
Money talks BS walks!
Insurance Co's must see that the dollars they spend are not having to be repeated and repeated in PTA's where IVUS is used by a skilled IR?

I had an MRI of the spine recently that revealed 4 small MS plaques on the cervical spinal cord. Are MS lesions on the spinal cord associated with CCSVI? If so would it be the azygous vein that's involved? Maybe you've discussed this before but I don't remember.

David1949 wrote:I had an MRI of the spine recently that revealed 4 small MS plaques on the cervical spinal cord. Are MS lesions on the spinal cord associated with CCSVI? If so would it be the azygous vein that's involved? Maybe you've discussed this before but I don't remember.

Hi David I had lesions on the spine also, probably still do. From what I recall reading in the past I think the azygous does play a large part in the lower extremities. But I'm no Doctor just happen to share in the affliction.

Four new spinal lesions, David? Are you doing ok?
Here's an old answer from Dr. Sclafani http://www.thisisms.com/forum/chronic-c ... ml#p124450

Wow Cece, you're like the gate keeper of past present and future info, I bow to you, how do you keep track

I do a google site search on terms like "thisisms, drsclafani, cervical."

I was looking more specifically for a statement from Dr. Sclafani saying that it doesn't have to be the azygous for there to be damage in the spinal cord. Here it is...

costumenastional wrote:Dr Sclafani told me BEFORE i had the doppler that jugular vein problems can lead to MS lesions in the cervical area.
Surprise surprise, he was right!

http://www.thisisms.com/forum/chronic-c ... tml#p99946