DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: change of airlines

Postby drsclafani » Sun Jul 18, 2010 8:39 am

Nunzio wrote:
NHE wrote:Hi 1eye,

1eye wrote:So n*r*r of that cylindrical section is really volume of a cylindrical vein of length n and radius r. Clear as mud?


This wouldn't give you volume. For that you need length x area or n*π*r². In addition, cross sectional area is used for the comparison instead of something like the radius or diameter since the veins are often not perfect circles.

Hope this helps, NHE

I think the 1eye misunderstanding come from the fact that n represent the greek letter Pi or 3.14 which look like an eglish alphabet "n" or TT, therefore r*r*Pi is the area of a circle.


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
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Advertisement

Postby drsclafani » Sun Jul 18, 2010 8:44 am

irishmum wrote:Hi Dr Sclafani,

sorry to bother you with this question but I have tried to get an answer from my gp who didnt have a clue about 'sticky blood syndrome' tested me for facor V and told me I had no problem.

You had advised me sometime ago to have my blood tested for this condition before I would attend for the ccsvi treatment as my brother suffers from this. I got the results about five weeks ago orderd by my work/college gp who thinks there is an issue with it and to bring the result to my next appointment with my neuro which is not until end of august...

I havent got a clue what kind of test they are only that they are for coagulation. They were ran in a lab in a university hospital in Ireland.

Antithrombin 120.0 u/dl (79 - 131)
Protein C 120 u/dl (64 - 128)
Free Protein S 146.0 u/dl (65 - 124) H
APC resistance 2.9 (2.1- 4.0)
Lupus Inhibitor Negative

What do you think. I suppose I am ever hopeful as I have not got a proper diagnosis and I know that sitcky blood can mimic ms. Although my brother has sticky blood and a missing or undeveloped vein into his kidney and both conditions contrived to cause dvts in both legs. (he was diagnosed in London)

Thank you so much for your time.
Regards

Maureen


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.
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

A WARNING

Postby drsclafani » Sun Jul 18, 2010 9:06 am

LadyGazelle wrote:I have MRV scheduled AGAIN for 7/20/10 WITH CONTRAST this time because they realized they needed it :( after I had dropped off a CD of my brain MRI with Zamboni's protocol before the first MRV test on 7/7/10 :!:

I also faxed over the meeting January 26th to Dr. Sarah, (the IR who read the first MRV) who said they needed time to investigate CCSVI before they use the contrast dye. Friday I learned she will be out of the country INCLUDING NEXT WEEK! Perhaps it will be the chairman of the diagostic imaging department at the Hospital who needed extra time.

:?: The question is: My PCP ordered the tests at my request, so should I talk with the IR (who will be reading them) to see if he will do Catheter Venogram GOLD STANDARD next no matter what he finds? My PC appreciates my help and will prescribe it if/when I find someone to do it. I also appreciate your intervention! :D

Inverted valves is all they think I have so far, but I don't trust them with stents in the veins. The more I know, the more I learn what I don't know! I'm afraid they won't listen when I ask that during the CV they use the LEFT femoral vein. I don't want to be the first unsuccessful liberation because they don't know what they're doing! :roll:


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.
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jul 18, 2010 9:25 am

drsclafani
Family Elder


Joined: Mar 13, 2010
Posts: 773


PostPosted: Mon Jul 19, 2010 2:21 am Post subject: Reply with quote Edit/Delete this post Delete this post
MS_HOPE wrote:
Sofia wrote: " I am not on here as often as before, as I am getting on with my life...."

YES!! That's exactly what we're all hoping for - a life where our MS symptoms are not the focus.

I'm so happy for you!


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.

s
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby costumenastional » Sun Jul 18, 2010 9:57 am

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...
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby Cece » Sun Jul 18, 2010 12:55 pm

HollyBarr wrote:Au contraire, my only caveat re intake info tattooed on the inside of your jugulars was a wee bit of insecurity over whether the IVUS could differentiate between things like a number 3 and a number 5 :wink:. .

:lol: :lol: :lol:
Better ivus should do the trick...
drsclafani wrote:there are many things that would be proper equipment. Better ivus. cutting balloons, artificial stent/valves, or stents or valves, better balloons, valvulotomes, other things we cannot know yet
"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
Cece
Family Elder
 
Posts: 9023
Joined: Mon Jan 04, 2010 4:00 pm

Postby AlmostClever » Sun Jul 18, 2010 4:07 pm

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
If you can't explain it simply, you don't understand it well enough. - Al Einstein
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby drsclafani » Sun Jul 18, 2010 6:56 pm

AlmostClever wrote: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?


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

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

Thanks!

A/C


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.
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jul 18, 2010 7:21 pm

AlmostClever wrote:Life's tough... it's even tougher if you're stupid. - John Wayne


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
User avatar
drsclafani
Family Elder
 
Posts: 3142
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby L » Sun Jul 18, 2010 7:23 pm

drsclafani wrote:
AlmostClever wrote:Life's tough... it's even tougher if you're stupid. - John Wayne


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!
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby Cece » Sun Jul 18, 2010 8:07 pm

drsclafani wrote:11:15-11:30 Michelle Brown Connecticut Patient activism

Go Michelle!!!
"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
Cece
Family Elder
 
Posts: 9023
Joined: Mon Jan 04, 2010 4:00 pm

WARNING

Postby LadyGazelle » Sun Jul 18, 2010 8:43 pm

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.


:wink: LadyGazelle
User avatar
LadyGazelle
Family Member
 
Posts: 38
Joined: Sat Jul 03, 2010 3:00 pm
Location: Rochester, New York

Postby Cece » Sun Jul 18, 2010 8:53 pm

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

Good questions, hopefully everyone will come along with some answers.... :wink:
"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
Cece
Family Elder
 
Posts: 9023
Joined: Mon Jan 04, 2010 4:00 pm

Postby nancymno » Mon Jul 19, 2010 3:51 am

Cece wrote:
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

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

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?
User avatar
nancymno
Getting to Know You...
 
Posts: 13
Joined: Sun May 09, 2010 3:00 pm
Location: Michigan

Postby magoo » Mon Jul 19, 2010 5:24 am

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


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 :D
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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service