DrSclafani answers some questions

[Cece]

Firstly, i speculate that many of these malformations occur where the embyologic cardinal system differentiates into the adult venous system.

A link for those interested:
http://www.embryology.ch/anglais/pcardio/venen01.html
Click on 'start' at the bottom and watch the veins differentiate.
#6, the superior cardinal vein in blue, is the one that becomes the IJV and subclavian and others.
#20 is the azygous, from the orange supracardinal vein

[Interrupted]

Dr Sclafani,

With the topic of stents being much talked about at the moment, and since i'm just about to go abroad for my first procedure, i'll ask the question that's nagging at me straight out...

In such an instance of a first procedure abroad, would you recommend:
a) That they agree only to ballooning and clearly refuse stents before going in?
b) Should the balooning obviously fail while 'on the table', still refuse a stent, accept the angio has not been successful at this time, and go home and wait for further research?
c) Leave the decision to the judgement of the surgeon?

I know the decision is a personal one but i'd very much like to know YOUR gut instinct on the above scenario. Many thanks.

[NZer1]

Hi Dr, quick one, are there valves in the vertebral veins or is it more likely they will have malformations?
PS Michael Flanagan (Upright doctor) has joined the site, have a look on the thread 'Costumenational' .

[NHE]

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?

In Kuwait, that number drops to 8%. The jury is still out deliberating.

NHE

[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?

yes, if the main conduits are obstructed there is a problem, if the secondary roads are also blocked, the backup becomes greater

[drsclafani]

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.

we can only speciulate about some of the reasons that healthy patients have doppler findings suggestive of ccsvi.

1. doppler is a screening test: the gold standard venography needs to be sone to prove whether the helathy patients actually had some visible probelm
2. healthy patients included relatives of patients....does that influence things
3. will the positive healthy patients develop MS,

[drsclafani]

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!

I expect to have something to say in 2-3 weeks

[drsclafani]

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.

For the moment, the first question that must be answered by the treaters: is the treatment safe? What percentage of patietns will develope complications

then we can do cohort studies and have registries that question effectiveness

Finally we will have to do trials with placebo control because some of the symptoms are very nebulous and may be strongly influeced by the placbo effect.

Sad but true.

my goal is to see what effect there is on quality of life. We will need to evaluate single symptoms Not whether brain lesions change, but does the patient's quality of life change....Are there less headcaches? etc.

some of the symptoms, including fatigue, confusion, and imbalance have been reported to occur during other venous problems

[drsclafani]

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

MRV and doppler are screening tests. If they show suspicion of venous disease then have done their job. The have led to the Gold standard test of venography.
It is only when both tests are normal that we worry aboutmissing something because we do not have a strong indication for venography except the diagnosis of MS.

so i believe that the gold standard test is defnitive.

Why do the doppler? because i need a screening test for followup care

[drsclafani]

Dr Sclafani,

With the topic of stents being much talked about at the moment, and since i'm just about to go abroad for my first procedure, i'll ask the question that's nagging at me straight out...

In such an instance of a first procedure abroad, would you recommend:
a) That they agree only to ballooning and clearly refuse stents before going in?
b) Should the balooning obviously fail while 'on the table', still refuse a stent, accept the angio has not been successful at this time, and go home and wait for further research?
c) Leave the decision to the judgement of the surgeon?

I know the decision is a personal one but i'd very much like to know YOUR gut instinct on the above scenario. Many thanks.

i am just going to try to use larger balloons, longer and m ore frequent dilatations and fractionated heparin or heparin like material.

i am not going to put a stent in at this point

[drsclafani]

Hi Dr, quick one, are there valves in the vertebral veins or is it more likely they will have malformations?
PS Michael Flanagan (Upright doctor) has joined the site, have a look on the thread 'Costumenational' .

They may have valves. They do get malformations

[pklittle]

Dr. Sclafani,
It sounds like you will adopt some of the techniques used by Dr. Sinan. His presentation at your symposium was very impressive to me and my husband. Larger balloons, longer dilations, more dilations made sense. I look forward to the day when I can see you, as I won't travel out of the US for treatment.
Thanks
Pam

[HappyPoet]

Dr. Sclafani, you have passed 1,000 posts!

An amazing milestone!

Thank you!

[Cece]

i am just going to try to use larger balloons, longer and m ore frequent dilatations and fractionated heparin or heparin like material.

So the benefits to this are:
* reducing the rates of restenosis, possibly all the way down to 2% (!) which I would not have thought possible
* avoiding altogether the short-term and long-term problems that may be associated with stent usage

But the risks are:
* a chance of more tears in the vein due to the larger balloons or longer dilations
* as a result of the tearing, a greater risk of clots or vein regrowth to occur, with the ultimate risk being a clot breaking off or a vein growing closed (and this would be what the heparin-like material or fractionated heparin will be working to counter)

Did I miss anything?

Are you less likely to use a cutting balloon if you are now planning to use these larger balloons and longer dilations, because they increase the tearing and a cutting balloon also increases the amount of tearing?

[CaptBoo]

Cece, where did you get that 2% number?