This Is MS Multiple Sclerosis Community: Knowledge & Support

It's nice to want to promote Dr. Sclafani's symposium, but if you're looking for celebrities to attend or to look into CCSVI you have to be careful who you approach. Many have corporate ties. I understand that Montel is already a paid spokesperson for Copaxone, as is Teri Garr. These people are already playing for the other team, folks. We could neither count on nor trust what they would say.

We're only a week away. I'm going to send info to my GP and the neuro she recommended I see (since I don't see one now). He's young so he might be idealistic and open to new ideas. I'm going to send it to all my old neuros, and some radiologists around me.

Now this is a rallying cry!!


Good times.

I seem to remember that luxuriant means excessive; vicarious means abnormal or occurring in an abnormal place in the body.

But don't forget diapedesis, that is a good word too (meaning the leakage described above). I think when we explain about leakage, that is when the other person's quack thermometer sometimes goes up. I don't use vicarious or luxuriant, but I do use diapedesis.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think I recognize that person by the subject matter, the tone. and the use of bolding. I have figured this question out, in spite of certain people's talent for and interest in FUD more than anything else. BTW CCSVI is the name of the condition, MS is the name of the symptoms -- until now, MS was just a catchy name for stuff that in the 19th century could only be discovered in corpses. But that's what you get, among other things. Multiple scleroses.

The procedure (which is not surgery) is called Liberation.

The veins expand to allow the heart to rest when you are lying down. During the day, when you are upright, you must have the heart strength to lift half your blood from toetips to headtop. During rest the force of gravity is not working against the flow *except* at extremities, where we will not care so much, since we are resting. That does not take muscular pumping (thoracic or other muscles) into account, and I don't know which one does more, muscular pumping or the heart's negative pressure.

Anyway, the brain cannot depend on the vertebral veins during sleep to be sufficient, because of the lower gravitational force in that direction, but the jugular gate is opened allowing your brain to get lots of oxygen without your heart working any harder. If you use different veins, that might be for the sleeping vs. waking brains.


See I was more interested in reasons than hydraulics. Also using all caps for something is considered shouting, on Internet. Better to stick with bolding. A lot of us here have sensitive ears.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Dear Dr S., re your Symposium.
From the "program" it appears all the speakers will talk for about half and hour on their various experiences and then at the end there will be a 2 hour case study session.

From what you've been writing lately, and something that almosts scares the life out of me, there seems to be no standard for diagnosis and treatment, yes we have the Zamboni Protocols, but it seems many "liberators" are using stents, you yourself have suggested maybe better ways to diagnose, and obviously as more and more treatment is being done, we will get even better at doing it (I say "we" in the "royal" sense of the word). And of course as you've also addressed, there are clinics popping up all over (EXCEPT IN CANADA UNFORTUNATELY!!!!!) and no one knows how well trained these people are. I've also read you addressing the possibilities of missed diagnosis, the likliehood of the azygous vein not being checked etc, etc, etc.

So a question re the Symposium would be, will all "the guys" attending be getting together to swap stories on diagnosing / treating, will anyone be raising the issue of standardizing what you all do, will you be trying to arrange that everyone is kept up-to-date ??? Or are you and "the guys" already doing this ?????

I got to a DEAD END with testing. The MRV with contrast dye was canceled - because they don't know what they're looking for. I want a CD of the MRV without the contrast but they said they can't read it, so it's incomplete. The other thing I learned is they don't have the Sieman's machine for the MRV.

Then I called the doppler guy and asked why I didn't get a transcranial doppler and he said the Rx called for a doppler only. And I would need a new Rx that says exactly what they need to look for and then go to the neurology department of the hospital because they have the correct machine. Also he told me to find someone who would be willing to learn what I'm looking for and also ask if they could recommend a neurologist to help me. I had told him my neuro doesn't know I'm doing this because I know he wouldn't go along with it. Besides, it is a VASCULAR issue WITH MS and my PCD is concerned.

Also, the MRV doctor (who talked with my PCP initially) suggested that I go to Albany because they are more familiar with what I'm doing. Buffalo was another option the girl who is working with him mentioned - but I don't want some placebo treatment for their study!

PFFT I'll wait until next week and get the Rx for a transcranial doppler. But this time I will tell my PCP exactly what I'm looking for - and thank your Dr. S for that information. When I mentioned CSA, the technician didn't know what that was. So he couldn't comment on what his doppler showed. All I have is possible inverted valves in both jugulars with reflux. THAT'S TWO CRITERIA! Because he doesn't know about CSA - he can't compute for the negative number but he told me at the time that there isn't much difference with me laying down or sitting up. Could be THREE criteria.


TO BUMP THIS UP I'M INCLUDING IT HERE:

1. Transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. Measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.

DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC

If I get the CD, then I'm going to find out who could review it and do the procedure, but as we have been told - we want someone experienced. How do we know that? Get in line!

LadyGazelle - (Leaping through hoops on fire!)
.

as i think of what to say in my half hour, i think it will be about CCSVI. I may try to not once use the word MS.
I will definitely bring up the lack of discipline in formulating diagnostic and treatment plans and call for standarization at some point.

I have already stated that in my first publication on ccsvi that should come out within the month

Where will this be ublished?

fogdweller, this was from a few days ago:

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr. Sclafani, will you be able to put up a link for your article so we can read it? and maybe print it for any of our doctors?

This is very good to know. I asked my neuro a few days ago for a referral to our hospital's IR and he said NO!

That means I'd have to pay myself unless I can get my PCP to do it for jugular pain (which I have) and chest pain (which I have).

If not, I'd like to write our local IR and ask him to read Dr. Sclafani's article in Endovascular Today. Hopefully more and more IRs will be inspired to seek training for the testing, or to do the tests.

Surprised to see that it has not filled up. I sent out a letter I had written along with the letter advertising your symposium on saturday. Not sure if the IR and VS will get it in time to respond if interested.

Dr Sclafani,

If no CCSVI is detected, but the small veins in the spinal cord and brain are narrowed, i suppose you have the same problem....blood leakage into the tissue??


Robert
PS success with the symposium!

At this point one can only imagine. And i imagine that this could not happen because if a small vein is blocked at its starting point there wont be any reflux and by that no microhemorage as a consequence. There s no evidence that inability for a small vein to drain would result in damage like the CCSVI reflux hypothesis suggests. There shouldn't be leakage when flow and reflux is non existent. I mean, that vein would simply not work and blood could possibly drain from another vessel nearby.
On the other hand, if the blockage is further away from the vein's starting point it could well explain why some of us have brain lesions without evidence of CCSVI and less disability and disease progression. Topic damage instead of global. Just like you suggest.
I trust that we ll know better in a few years when MRVs and transcranial doppler software allow everything to be seen in such detail.

For the time being, we have to rely on Haacke's iron deposits research which is a good example of invisible things happening in our brains even when no ms lesions are present. But one can say that blockages in the jugs or azy could result to this also.

How to do a follow up exam of the azygous veins? If I understand correctly, it is very difficult to get a good view of these veins until catheter venography. How do you think this will be monitored in follow up visits? Base it on symptomology?

Thankfully, Dr. Bonn has a great follow up plan. I'm currently in waiting room for my 3 month follow up exam.

On the spot reportage! That's pretty good! Is it a nice waiting room? Will we get an update from the examination room?