DrSclafani answers some questions

[David1949]

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

Cece thanks for the info. What I'm wondering is if ballooning the azygous can help with MS in the spine.

I don't know if the lesions are new because this is the first time I've had an MRI of the cervical spine. They could have been there for a long time or they could be new.

Yeah I'm OK. Don't worry about me. I believe in the old adage "count your blessings" and I've had many of them, including nice friends like you. No complaints from me, but it would be nice if I could get my gimpy leg working again.

[David1949]

Cece
You must have posted just a few minutes before my last one.

You remembered that article from nearly 2 years ago. Wow, nothing wrong with your memory!

[PointsNorth]

I'd like to learn more about this LVD stuff. I've got mobility/bladder/bowel issues but both of my procedures revealed no stenoses in the azygous (2nd procedure w. IVUS). I wonder how common this is? I know I have a few spinal lesions. Maybe more than a few now.

Altho Dr.S might object, I think it's time for an acronym? Or something sexy like 'Luxvicadra'. Sounds like a new drug?

PN

[Cece]

LVD = luxuriant vicarious drainage?

Where is Dr. Sclafani? I am waiting to hear his take on ISNVD!

[PointsNorth]

LVD = luxuriant vicarious drainage? That be it.

Where is Dr. Sclafani? I am waiting to hear his take on ISNVD!

[PointsNorth]

[quote="Cece"]LVD = luxuriant vicarious drainage?

LVD - that be it.

[Cece]

As I have modified my venogram of the dural sinuses, I have noted very prominent emissary veins and these veins provide large conduits increase flow through the spinal veins. I am unclear if there is an association between this emissary vein and symptoms, though.

(I actually emailed dr zamboni about this today!) Wonder what he thinks, although I dont think that dr galleoti routinely images the dural sinuses.

I wonder too! Might be ok if no azygous blockage but not good if there is azygous blockage because it adds to the flow there. Spinal veins also not meant to carry excess flow?

My thoughts exactly. Those emisssary veins are adding considerable flow through the cervical spinal circulation

Here's a possible route, David, for a jugular vein blockage to lead to impaired cervical spinal drainage.

[drsclafani]

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, it was a very busy weekend and beginning of the week at the ISNVD meeting. There was much to learn about so many topics with which i am quite unfamiliar. O

There was a move toward integrated imaging. Lots trying to determine flow on MRI, quantitative and qualitative data.
There was quite a bit on MS from a neurological point of view. I found it so enlightening. It gave me some new understanding.

I found it interesting that some neurologists looked at cog fog and fatigue as signs of depression rather than actual symptoms

i learned that neurologists see patient symptoms are varying quite a bit, that symptoms can be there one day and gone the next, that symptoms can be different during morning and evening. I wished I had a year to do some learning of neurology

[drsclafani]

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?

Clearly there was resistance but many were quite intrigued by my discussion of this case. Some wanted to borrow the images to use in lectures. Even Dr Scheling was swayed toward agreement and dr zamboni was very emphatic in his opinion that this was really important

ANother IR said that he also had such a case.

THe IVUS approach was not exciting to many, although some were interested. Several were concerned about cost and about time

[drsclafani]

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..

Some learned and esteemed physicians do not even think it is an insufficiency

[drsclafani]

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

I think there is a pathological state of MS. the debate is about what is cause and what is effect.
I thiink there is a pathological state currently called ccsvi. This needs to be validated before many physicians will take it seriously. Unfortunately that will require a randomized prospective double blind sham arm trial lasting two years to satisfy some.

I dont trust it but i guess it has to be done

[drsclafani]

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

i am in your corner, bro

[drsclafani]

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

I think i had one today, although there was a slight valvular dysfunction on one side

there are many causes of demyelination. And there are probably some patients who do not have ccsvi

[drsclafani]

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?

12% use it regularly, 12% use it occasionally, about 50% dont have access to it;

other news, new IVUS unit will have 5 times the resolution, and be able to compete with optical computed tomography. resolution will be on order of 25 microns. a red blood cell is 6 microns!

those that use it think it is really valuable, that they cannot imagine doing the procedure without IVUS

[drsclafani]

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.

Japan uses it routinely during coronary artery interventions. they have a significantly lower restenosis rate than the US.

its use in US is likely to increase when government and other insurers pay for quality, just around the corner