This Is MS Multiple Sclerosis Community: Knowledge & Support

nunzio
thank you for clarifying that for everyone. I was as confused by oneeye as others were. I was going to instruct that the formula made no sense as we are concerned with area, not volume, but you did it for me.

Some of the ultrasound units automatically calculate the area from the measurements. Often it is quite clear that the area of the vein is larger or smaller comparing upright and supine by simply eyeballing it, a pun both of you can relate to

your lab results are listed first, followed by the normal values of the lab that did your testing in parentheses. I don't see any lab results of a deficiency that would lead to a "sticky blood" disorder.

Looks like time to look into a Doppler ultrasound to screen for CCSVI and if positive to find someplace to do a catheter venogram.

I am finding it more and more difficult to make sense or give opinions about the testing that people are describing on this site.

The more I see the results of all the testing being sent to me, the more i realize that we are moving into unchartered, unvalidated utilization of MRv and crappy ultrasound exams. Can someone point to a paper that shows that MRV correlates with catheter venograms? while many experts are trying, I am not aware of this test being validated. It seems that many patients and doctors are RELYING on an unproven expensive screening test instead of a VALIDATED inexpensive screening test like Doppler ultrasound. Worse still, many of the Ultrasound exams that people are sending me are incomplete, and do not have TCD, do not have transverse imaging, do not show the vertebral veins, do not have B-mode imaging.

I fear that we are going to validate Big Pharm's and some neurologists' objections if we don't start validating and standardizing these tests.

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.

s

Speaking for myself, i had a follow up doppler 2 weeks ago and two and a half months out of treatment. The radiologist told me my veins are actually visible this time while my collaterals are still flowing also.
He will check me on the 6 month mark again.

Having said that, i think that i will need more than that down the road as new vascular problems are constantly being found and even people who have stents placed in their jugs are being told that flow is again absent one year after...

http://www.thisisms.com/ftopict-12796.html

All in all, i am far from feeling comfortable with the follow up care available.

Hope that gives you an idea of where some of us stand.
I also hope that the research will progress quickly cause having the angio is one thing. Keep the blood flowing after that is another...

Better ivus should do the trick...

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"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

Hi Doctor S.

I've been looking through the internet and can't find a consistent answer for these:

What are the normal average diameter sizes of the external and internal jugular vein?

Is there an average or minimum amount of blood that should be going through one's noggin?

Thanks!

A/C

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

about 9-15 mm in diameter. The vein is really variable in size



about 1/2 ml/min per gram of brain tissue weight. This euates to about 50 ml of blood per minute per 100 grams of brain or about 750 milliliters of blood per minute.

Ok, my symposium is about one week away. I think it is time to open this symposium to about 75 patients. We have about 25 already requesting seating, so i wanted to advise you all that we will allow another 50 patients to reserve seating

email ccsvisymposium@gmail.com if you want to attend

The program is listed below


"Symposium on CCSVI
State University of New York Downstate Medical Center
395 Lenox Road
Brooklyn, New York 11203
Monday July 26, 2010
9:00am-4:00 pm"

9:00-9:30 Fabrizio Salvi Ferrara Italy Clinical Manifestations of CCSVI
9:30-10:00 Sal Sclafani Brooklyn, NY An overview of CCSVI for Interventional Radiologists
10:00-10:15 David Hubbard San Diego, Ca Delayed fMRI BOLD venous undershoot in cerebral cortex of patients with multiple sclerosis.
10:15-1045 Mark Haacke Detroit, Mi Characterizing the Manifestation of CCSVI with MR Venography and Flow Quantification:The role of MRI in treatment planning
10:45-11:15 Sal Sclafani Brooklyn, NY IVUS: the role of intravascular ultrasound in understanding the disease
11:15-11:30 Michelle Brown Connecticut Patient activism
11:30-1:00 Lunch in Cafeteria or on your own
1:00-1:30 Tariq Sinan Kuwait Initial Experiences in the Kuwaiti Trial
1:30-2:00 Ivo Petrov Bulgaria Initial Experiences in Sofia, Bulgaria
2:00-2:30 Gary Siskin Albany, NY Initial Experiences in Albany, NY
2:30-4:00 Audience and Faculty CASE REVIEWS. Audience cases welcome

Sounds great, I wish I could make it!

Go Michelle!!!

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"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,

My MRV to be REDONE with contrast dye Tuesday but the DOPPLER should be redone? quoting you: "Worse still, many of the Ultrasound exams that people are sending me are incomplete, and do not have TCD, do not have transverse imaging, do not show the vertebral veins, do not have B-mode imaging."

All the doppler found was inverted valves ("possibly an artifact") and they didn't do it right? All I provided was Dr. Zamboni's protocol for the doppler and the MRV. My PCP prescribed a "transcranial doppler" (pat him on the back for that), so I will tell him tomorrow that I didn't get what he asked for according to MY ONLINE doctor (you).

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

I will be contacting the technician tomorrow and will ask if the Doppler included "TCD" (transcranial doppler? right?), "transverse imaging", images of the "vertebral veins", as well as "B-mode imaging". If he says yes, I would like to send you a copy of the CD for your review to see if it's usable down the road when I find someone COMPETENT AND QUALIFIED to do the liberation procedure.


LadyGazelle

Good questions, hopefully everyone will come along with some answers....

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"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 am scheduled for August 24th (can't wait). The plan is to do Doppler ultrasounds at 3, 6, 12,18 and 24 months in my own location. Is that sufficient?

My follow-ups are at 2 months and a year. Once a year after that unless I have a problem.
MRV, meeting and questionaires. (possibly more since things are changing all of the time)
Dr. Dake and my GP.
I took Coumadin for 2 months, Plavix for 3 months and I will take an aspirin everyday for life. And I've been very compliant

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.