This Is MS Multiple Sclerosis Community: Knowledge & Support

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

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

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

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

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

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?

_________________
My name is not really Johnson. MSed up since 1993

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

Best regards,
M.

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

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.

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!

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.

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

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