drsclafani wrote:on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein
on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses
MRvenography is NOT the same as what most would call venography or, to be a purist, i would call catheter venography
catheter venography is the Gold Standard, but i would argue that all have their value as does
intravascular ultrasound (IVUS)
you all know I am going to try to prove that catheter venography plus IVUS should be the gold standard.
Neither ultrasound nor MRvenography is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.
fogdweller wrote:Just a quick thought, Dr. S. l know you have said that you plan to make your atlas a coffee table print book, but if you make it a net atlas, you could include moving pictures, and these are sometimes more instructive.
LadyGazelle wrote:I just figured out how to post ONE of my doppler pictures from the CD they gave me showing the possible inverted valve in my jugular (or an "artifact"). I am very appreciative of your time, and it's not necessary for you to reply.
I'm just glad I figured out how to do it!
Thank you for the information you provided for me, and I will be faxing it to my IR so he will have it before I see him tomorrow for the first time. I hope he doesn't think of me as a PITA
vivavie wrote:Hi Doc! it has been 10 weeks since my Half liberation. I have lost pretty much all the benefits gain except for my legs stiffness. Never once since April 25 my legs bucckled after sitting or walking! I walk normally. which is great but the fatigue, pain, brain fog, etc never went.
I had also lost the motivation to continue battleling to get treated here in Canada and get my Azygos checked.
Your symposium and article announcements gave me back the courage to carry on. Thank you for not given up on us!
Do you know if Dr Kostecki from Tychy, Poland will be there? I have to decide if I should go back...
Donnchadh wrote:Dr. Sclafani:
Do you have a direct link to your symposium announcement? I could forward it to a couple of IR's here in the Midwest.
Rompers wrote:Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?
And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".
Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!
LadyGazelle wrote:I just wonder how many IR's would take advantage of this opportunity. We give them the protocols and it's still difficult to get them to take action.
The IR has to pretty darn sure the IRB will approve this. Follow the money and see who accepts the offer to learn for free. It's not what they know, it's who will let them use their knowledge.
I don't WANT to be negative here - but someone has to be PRO-CCSVI for them to learn anything more than what their peers are telling them at this time.
I think there should be MONTHLY meetings where every IR will have an opportunity to be educated from the best as soon as possible... which most likely won't be urgent for THEM like it is for US.
larmo wrote:You don't want to use an old outdated map to get directions to drive across the country !
drsclafani wrote:So you need to be patient and perhaps more understanding about the road to acceptance of this technique.
LadyGazelle wrote:Dr. Sclafani, I know it's a learning process - but because they DIDN'T do the MRV with contrast like I insisted before having it done on 7/6, they are saying they need it (rescheduled for the 20th) WITH CONTRAST.
The director of the diagnostic imaging lab told the doctor that I had requested it, so I told her the GOLD STANDARD is the Catheter Venogram, and to be sure to mention THAT to the doctor too.
Also, before I get the catheter venogram, that has iodine in it and I am on Levothyroxine so she didn't THINK it made any difference. I looked it up on the internet (of course) but what do you say about that? Should I be concerned? She said it would only affect my kidneys and they are ok (from the blood tests they did).
Cece wrote:drsclafani wrote:in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment
By proper equipment, do you mean the invention of a venous stent or proving the value of ivus and cutting balloons or is there something else out there?
If your new irb proposal gets submitted and passed in the next two months, how soon would you be able to get some new research papers out there? Would you be able to publish on IVUS even as your new research was getting underway?
CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.
This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!
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