This Is MS Multiple Sclerosis Knowledge & Support Community

Rokkit wrote:This symposium is fantastic. I can't wait to hear how it's been going in Kuwait. Every speaker is absolutely exciting. Too bad those extra 50 seats can't be filled with neurologists. I wish it could be broadcast live over the web, at least the audio. Excellent job, Dr. Sclafani. Your time on the sideline has enabled you to organize an enormously important event.

vivavie wrote:
As for your question about follow up: Drs here including GP and neuro are afraid they will lose their licence if they get involve. So basically until I get sick enough to go wait 48hrs at the emergency room, no follow up is possible.

Because of my father (retired in May) I was able to get a Doppler (which I sent you last week). The technician said it looks good!?!?? When I mentionned your symposium his answer was: "we do the test better here and we don't get the same results as Zamboni". Isn't that something!!!! We are a banana republic...

I am still searching for your clone in Qc!

MS_HOPE wrote:Dr. Sclafani, I'd posted information about your symposium (for medical professionals) as one of the comments to the NY Times article, but after it appeared, it was taken off. I assumed you or your staff had requested that it be removed, possibly because of concerns about a potential over-response and crowding.

At this point it's unlikely to get many, if any, reads, but would it be OK if I or someone else posted it again? (I understand you still have 50 or so available seats?) Thanks.

bestadmom wrote:The CCSVI Alliance is hoping to tape the event and use segments for our website.

Thanks Cece - now my "cover" is blown, not that I've got anything to hide!

drsclafani wrote:

Trish317 wrote:

drsclafani wrote:
look, this is a very short notice thing. I did not invite a tenth of those who might be interested.

For the next ten days, i am looking for more doctors who are intersted or thinking about this subject. please do use your advocacy to share the word. I actually injoy your empowerment

Hi Dr. S,

I've shared the information regarding your symposium with two vascular surgeons I've been corresponding with (one at Rhode Island Hospital and the other at the University of Iowa), and the nurse of a very prominent vascular surgeon (if you'd like names, I'll send them offline) but I wasn't sure if it was ok to do so after I read this on Facebook....

This event is not open to the public. The auditorium has limited seating and IR's in the NY tri-state area and select neurologists were invited by email directly by Dr. Sclafani, and there is room for more to attend. The subject matter is targeted to IR's and MS neurologists. Attendees must rsvp and be registered. The media is invited. Wheelchair Kamikaze will video tape the symposium for the CCSVI Alliance website. If there is room, patients will be invited.

She seemed to have "inside" information. So, I'm happy to know that it's alright to "share the word".

Thank you for everything you do, Dr. S. That can not be said often enough.

the university is legitimately concerned about a surge of interest that exceeds the occupancy. please tell those physicians who would like to attend that they must reserve space by emailing requests for reservations to ccsviSymposium@gmail.com

JohnJoseph wrote: 1eye, I feel I need to join you in questioning the physics behind the flow variation through the IJVs.
We all have learned here what the normal variation to expect in a healthy person is - but what is the hydraulic reasoning behind?
In fact this is what has caught me about CCSVI - the HYDRAULICS of it: If it is "just" a mechanical problem in a hydraulic system of drainage tubes and valves, so there should be a good chance of fixing it by a suitable "plumbing" !
Dear Doc, would you have any nutritive comments on the physics of this flow variation phenomena in IJVs?
Few of us here could possibly sleep better then...

Thanks once more, all the best for the symposium
JJ

LadyGazelle wrote:

Lady Gazelle in red:

***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.

Cece:
I don't think he wants to be in a position where people are going back to their doctors and IRs and saying, "Dr. Sclafani on the internet says...."

Besides possible offense to your doctor, I worry that he'll put himself at risk of legal liability here somehow.

He may well be able to answer this request for what the correct testing prescription must include. But I think this could be found also within Dr. Zamboni's research? He must have spelled out how he did the transcranial doppler? I can find a link if it would help.

BELOW IS SOMETHING I had found earlier from Dr. Sclafani:

Regarding the "pre-liberation" tests: There are pros and cons for each kind.

The doppler is non-invasive and cheap, but it MUST be done by someone who is properly trained. What it will show is where blood flow goes (or doesn't go). It's not great for pinpointing the location of blockages in the jugulars, and it can't look at the azygos vein at all.

The MRV looks for blockages in both the jugulars and the azygos, but won't find the telltale reflux or backflow of blood. That's an important distinction since some people don't have blockages -- but they do have problems with a valve in a vein or with a flap within a vein that causes reflux. And since it exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram.

So, which ever way you go, be sure to deal with a doctor who understands the full significance of each test and what it will -- or can't -- show.

Another subtle but important point that's just come out this month is which side to insert the catheter to do the venagram. Most IRs choose the side that gives the straightest path. Zamboni says to use the other side since it is more likely to find problems -- precisely because it isn't a straight path. Remember, they're looking for kinks in veins, blockages and the more convoluted the path, the more likely they are to find a problem that would otherwise be missed.
If your doctor uses the wrong technique (which is still rapidly evolving), you'll just get a bill and no results!

Another example of why a doctor needs to be up-to-date about CCSVI is that the catheter may hold open a valve that is normally stuck shut, and then the problem gets missed. Or it may miss a flap that divides the vein (because it was threaded through one side of the flap).

For me, that would be completely devastating. For others, you may need treatment more than I do and it's worth the risk to get treated ASAP.

Since those of us who are rabid (and desperate) may actually know more about the finer points of CCSVI than our primary care physicians, having this kind of information is critical. Yes, angioplasties and stents have been around for decades and are considered quite safe. Just be sure you deal with a doctor who will do the necessary research so you get the best possible results.

So, Cece, I guess "I'm rabid and desperate" and missed that answer.

I need to be sure to get a Transcranial Color Doppler first, "And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."

Well, that would be ok for me if I knew beforehand that a TCD was absolutely necessary and insist on it when the technician told me it wasn't necessary. I just talked with the IR who said he wants me to go to Albany or someplace where they know what they're doing.

Can you understand my frustration? I called to get "rescheduled" for a Transcranial Color Doppler because the technician didn't follow the Rx from my PCP who is out of town all week.

That way, I will have the test done and send the CD to someone close to Rochester, New York requesting to be liberated!

I hope this post clarifies what others need to request from their doctors.

LadyGazelle

Renoandi wrote:Dear Dr. Sclafani,

I am sorry if this question has been asked elsewhere, but looking through all of the threads is hard for me.

I am wondering how CCSVI affects the spinal cord? Would the azagos vein be the reason with refulx and leaving iron deposits in the spinal cord.

I ask because all of my relapses have been due to spinal lesions. I understand how the refulx in the brain works, but have not seen anything really addressing the spinal or cervical cord.

Even in all the drug studies and trials they only look at the brain, which I don't understand. The spinal cord does a lot of damage in MS, yet I don't read or hear much about that.

Thank you for all you are doing to help get proper information out there,

Sincerely,
Andrea

"And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."

drsclafani wrote:I am glad for all who have shown improvements. Wonderful.

But going on with your life should include surveillance to assure that restenosis does not result in recurrence.

So can you tell me, how you are being tested for this

doppler? MRV? clinical examinations?

how often?

Who is following your progression?

Are you compliant with followup advice?

Thanks
I "stole" my question from another thread. Another feature of DrSclafani ASKS some questions.
As this is the larger thread, I wanted to ask those who have had liberation the above question.

drsclafani wrote: ....back on the pharm thats the way we do it

have you looked in jail?

drsclafani wrote:THERE IS QUITE A BIT OF ROOM LEFT. FILLING THE ROOM WILL SHOW THAT INTEREST IS HIGH AND THAT THIS IS SERIOUS.

WE CAN ACCOMODATE ABOUT 75 MORE GUESTS