DrSclafani answers some questions

[drsclafani]

Having been through it, I can see that Doppler US in the proper hands is sufficient to determine flow problems in the lower jugulars. MRV just costs big money.

I don't know if I'd go that far; I was diagnosed by Dr. Simka in Katowice too - but in my case the results from Doppler alone were ambiguous. He needed to see the MRV to be sure it was worth going in (it was!).

-d

i have no objection when doppler is equivocal to proceed to mrv. however ultrasound makes sense as the first test.

[drsclafani]

I made four major points
...
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

s

Dr. S. several months ago you were suggesting that anyone getting treatment, if at all possible, should do so only in a study. Have you changed tht view?

I thnk I agree with you. Several of us in this forum have tried to figure out how to structure a study to obtain meaningful data, and with the variety of the conditions and the difficulty and variability of the condition, and the fact tht this is a surgical, mechanical intervention not a drug, that has been almost impossible, not to mention the difficulty in blinding the study. Do you have any suggetions for the structure of a study at this time?

No, I have not changed my mind. All patients should contribute to the furthering of this concept

step 1: proof of concept
step 2 open label cohort studies
step 3 small trials, registries
step 4 randomized prospective trials, possibly with placebo control

I think that patients should be part of studies, not necessarily that they need to be part of a randomized trial . First we have to figure out what is best practice

[drsclafani]

Dr. Sclafani,

In my Doppler and my venogram, as far as I know, only my jugulars and azygos were checked. I have read that the jugular is only operational in the supine position, which is about 1/3 of the time for most people. My question is why the veins responsible for cerebral outflow while upright aren't looked at.

Boo

The vertebral veins are small and may be challenging to catheterize. We need to explore zamboni's treatment before we expand treatments. thus I think that this is soemthing treatment would be premature

[drsclafani]

I made four major points
...
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

Dr. S. several months ago you were suggesting that anyone getting treatment, if at all possible, should do so only in a study. Have you changed tht view?

I think he was referring to randomization. I think those that want to go into randomized trials are definitely welcome to it. There are studies going on now, that will probably result in final bed-time for this dispute, and the issue of whether Liberation is placebo.

i would advise that randomized trials are premature. RCT by less than best practice will not prove anything

[drsclafani]

Yes, B-mode abnormality in both jugs supine.

B-mode abnormality is when the CSA of the jugs are bigger when you stand compared to lying down (the opposite of what they should be). It has to be an indicator of ccsvi drainage issues somewhere other than the jugs since they're the veins compensating, but I think this can mean either the verts or the azygous. So not as conclusive as I was first thinking it might be.

http://www.thisisms.com/ftopicp-124434.html#124434

Here's a link to a quote from drsclafani which indicates that if a clinic is following Zamboni's diagnostic criteria, it would include this step:

2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform

Bmode is a type of ultrasound imaging that results in images rather than measurement of flow, CSA can be measured, but abnormal valves septae etc are all identified by bmode

[drsclafani]

Try this thread, Nigel, it's full of everything I could find by drsclafani on verts:
http://www.thisisms.com/ftopict-13709-vertebral.html

Cece I think maybe one of the problems with vertebral veins is that like the rest of the brain they are encased in bone. This means that whatever space a vein takes neither arteries nor spinal fluid nor nerves may take. Things like bony growths, pressure in the spinal fluid, can subtract from the confined space.

I think that makes arteries better because they don't expand easily. Maybe veins will just take whatever space is left. Are they the lowest in the available-space pecking order, or is spinal fluid?

Anyway I think the space-limitations are ballooning limitations as well. With the jugulars the veins are routinely inflated temporarily to a size larger than the rest of the vein. Inside the spinal casing, this may not be possible or desirable. Have I got that right?

good thinking but the lower part of the vertebral veins are not encased in the bony structures. They drain into the subclavian vein. Perhaps there will be a role for angioplasty of these veins when they are obstructed. but we need to not confuse the issue at this time

[Johnson]

...

good thinking but the lower part of the vertebral veins are not encased in the bony structures. They drain into the subclavian vein. Perhaps there will be a role for angioplasty of these veins when they are obstructed. but we need to not confuse the issue at this time

And I'm not the anatomy whiz that I thought...

But if they drain to the subclavian (and I thought to the azygous), and there is a stricture of the juncture of the LIJV and the subclavian v., could that not explain some of the VV involvement vis-a-vis the upstream stenosis phenomenon that I have assumed? In other words, could IJV problems contribute to VV problems?

[malden]

CCSVI is a clinical entity caused by outflow obstruction of veins. The most common association is with MS but it is not proven that ccsvi causes ms. CCSVI may result in symptoms seen in patients with MS. Those symptoms may not be resulting from ms, but rather from ccsvi.

What symptoms are from MS, what symptoms are from CCSVI and what symptoms are common to both?

Best regards,
M.

[drsclafani]

good thinking but the lower part of the vertebral veins are not encased in the bony structures. They drain into the subclavian vein. Perhaps there will be a role for angioplasty of these veins when they are obstructed. but we need to not confuse the issue at this time

And I'm not the anatomy whiz that I thought...

But if they drain to the subclavian (and I thought to the azygous), and there is a stricture of the juncture of the LIJV and the subclavian v., could that not explain some of the VV involvement vis-a-vis the upstream stenosis phenomenon that I have assumed? In other words, could IJV problems contribute to VV problems?

JOhnson
it could contribute but not in the way you think.
Firstly, i speculate that many of these malformations occur where the embyologic cardinal system differentiates into the adult venous system. So it is always possible that the vertebral veins can have an unusual entry into the jugular vein or that the subclavian vein can itself be abnormally developed. This is not the common scenario.

Secondly, the vertebral veins themselves can be malformed.

So if jugular veins are obstructed AND vertebral veins are also obstructed we have a double obstruction that can have negative impact on cerebrospinal flow

[drsclafani]

CCSVI is a clinical entity caused by outflow obstruction of veins. The most common association is with MS but it is not proven that ccsvi causes ms. CCSVI may result in symptoms seen in patients with MS. Those symptoms may not be resulting from ms, but rather from ccsvi.

What symptoms are from MS, what symptoms are from CCSVI and what symptoms are common to both?

Best regards,
M.

That will require considerable study and review. We are not there yet.

We know from other diseases that mental confusion, headaches, lethargy and fatigue, and imbalance can result from cerebrospinal outflow obstructions that are not ms....but we have yet to learn how to teaase apart symptoms in MSers who have ccsvi

[malden]

CCSVI is a clinical entity caused by outflow obstruction of veins. The most common association is with MS but it is not proven that ccsvi causes ms. CCSVI may result in symptoms seen in patients with MS. Those symptoms may not be resulting from ms, but rather from ccsvi.

What symptoms are from MS, what symptoms are from CCSVI and what symptoms are common to both?

Best regards,
M.

That will require considerable study and review. We are not there yet.

We know from other diseases that mental confusion, headaches, lethargy and fatigue, and imbalance can result from cerebrospinal outflow obstructions that are not ms....but we have yet to learn how to teaase apart symptoms in MSers who have ccsvi

Iteresting thing is that, according to Buffalo study, we can diagnose cerebrospinal outflow obstructions on every fourth healty pearson - it's a huge number of people. How come that they don't have any cerebrospinal outflow obstruction symptoms?

M.

[dk]

Dr. Sclafani,

I have decided to wait until you are treating again to get the CCSVI procedure done (I am on your waiting list) because I feel you are one of the best to do this, I live close by in NJ and I've been pretty stable MS-wise for several years and not going downhill rapidly. But like everyone else, I never know if I'll wake up tomorrow in the middle of a bad relapse that will cause lasting damage.

Anyway, are you able to tell us if there is any chance you will be getting IRB approval anytime soon? I've been hoping you would be interested in being part of the Hubbard Foundation IRB and therefore get quicker approval but have no idea if your study interests lie elsewhere.

I had an mrv in the spring that shows there is definitely something going on, so I am pretty sure I'm a candidate.

Any update you can provide would be very much appreciated! Thanks!

[Squeakycat]

Iteresting thing is that, according to Buffalo study, we can diagnose cerebrospinal outflow obstructions on every fourth healty person - it's a huge number of people. How come that they don't have any cerebrospinal outflow obstruction symptoms?

M.

We don't yet know whether the Buffalo numbers will hold up, but if they do, they may provide an answer to problems many people have with things like migraines, chronic fatigue, mental confusion, problems with balance and so on, the standard list that Dr. Sclafani suggests are signs and symptoms which are classically associated with problems of cerebrospinal blood flow.

That's not a statement, but a question for Dr. S.

[drbart]

Iteresting thing is that, according to Buffalo study, we can diagnose cerebrospinal outflow obstructions on every fourth healty person - it's a huge number of people. How come that they don't have any cerebrospinal outflow obstruction symptoms?

M.

You're referring to the Buffalo study in which family members were included as "normals"?

[ozarkcanoer]

I would be interested in your comments on my CCSVI case. I was imaged with MRI/MRV plus doppler ultrasound in May at BNAC. They discovered severe stenosis in my right IJV.

I was treated by Dr H in Baltimore on August 17 and he discovered stenosis in both my right IJV and my left IJV and a twist in my azygos. I received 2 stents up by my ear in both IJVs and was ballooned only in my azygos.

I sent my MRI/MRV imaging results (copies of my CDs from BNAC) to Dr Haacke last summer. Just this month (after my procedure) I received back from Dr Haacke another analysis of my veins using Dr Haacke's protocols and software. Dr Haacke discovered the stenosis in both my IJVs but (of course) he could not see my azygos.

So, I have had 3 different analyses of my veins from 3 different very experienced places (BNAC, Dr Haacke, Dr H in Baltimore). It worries me that the BNAC data are skewed to misdiagnose CCSVI. And it is the BNAC data that seems to have the greatest influence on neurologists. Plus it worries me that all the other CCSVI research sites that rely on imaging only are showing many false negatives !!!! How can we convince neurologists and researchers that interpreting images is so subjective? My own case is a perfect example of this.

ozarkcanoer