This Is MS Multiple Sclerosis Community: Knowledge & Support

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

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?

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.

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

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.

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' .

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