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Hi all,

Which is the best place and earliest one where one can get him/herself scanned for CCSVI. I understand that Buffalo center has started the process but I guess there will be long waiting for it, I guess. Any alternative suggestion.

Sunny

Actually, there is a private clinic in Montreal, http://www.radiologymontreal.com/index.php the Westmount Square Medical Imaging. They provide the doppler scan using the Zamboni protocol, just got tested this week, and in discussions with the technician, he found a retrograde flow with my left IJV and Vert.

For $450... Well worth it.

HEY

Very interesting. How did you get the Dr request they indicate as required?
Thx for info
DOPPLER ULTRASOUND EXAMINATION OF THE NECK, SCREENING FOR CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY IN MS PATIENTS
WSMI is now offering an extensive Doppler ultrasound evaluation of the jugular and vertebral veins of the neck, in order to determine if any venous insufficiency exists. This examination can detect anatomical or flow direction abnormalities that have recently been linked to Multiple Sclerosis. To make an appointment, please call us to make a booking at (514) 939-9764 x 2714, once you have a requisition from your physician

I just printed the page, made an appointment with my GP, showed him it, and voila... He gave me the prescription, and I made the appointment. Not sure my insurance will cover it... But, at least I have the proof on my cd...

HEY

I did this exam, at the wesmount square 3 weeks ago, you habe to know that this is one of many other exam we need to have a clear view of our vascular own situation.... They do a venous doppler but as Cheerleader alwaws say: ''we need to do a intracranial doppler...'' .

At wesmount square they do a venous doppler and they actually follow the zamboni protocol but it is not a intracranial doppler and this can leed you to dont have anything that can be seeing int this exam and after you will thing tha you have nothing....

I received my result yesterday. I have a left jugular that is pathological... i have reflux.. But they say that i dont fullfill the zamboni diagnosis with this only pathological juguar....

We have to be cautious. The doppler is absolutly not a definite way to have your ccsvs to be diagnosis....

Barbara

But you still have a problem with your JV... Whether it's part of the Zamboni diag or not (for whatever that means...), there is still a problem, no???

HEY

Zamboni defined CCSVI as having two stenoses (or pathological valves or whatever the individual manifestation is). It seems like the body is able to compensate and work around a single stenosis, it's that second (or third or fourth one) which overwhelms the system...although I would think all this reasoning would also be affected by how bad the stenosis is. One complete occlusion or missing jugular might be plenty bad.

Are you able to get an MRV or venogram to look for a second one?

I have a pathological jugular for sure... and i know Simka and his team treat ''this only one criteria'' ( as they call it in my diagnosis).

Babiezuique, have you thought of seeing your GP and maybe getting in touch with a vascular surgeon or an IR specialist to help correct the problem??? Without bringing up the "cure me from MS doc".

This is a medical problem, that needs to be addressed, whether it is related to MS or not, I'll let the researchers figure that one out. I wouldn't even be addressing the MS issue or Zamboni's research. I would simply regard this as a vascular issue that needs to be addressed, and if it helps to stop my MS progression, then great!

But, I wouldn't be playing up the MS side of it.

HEY

Hi all,

Finally, I was able to get another round of MRV and this time on 3T machine with Dr. Hacke's potocol. The report says my right IJV got stenosis on the upper neck area and left IJV is indented by Carotid artery at its bifurcation.

So one more proven case of CCSVI..

Sunny

Hi Manoj,

Would it be possible to give more info about this.
Your complete journey. I think there was another gentleman here from India who was also looking for similar info.

Over the last week I have been able to pull out my old records about my MS history. And I am chasing my GP to refer me to a IR. Still no luck. But I will keep trying. Any reference to a confirmed case would help.

Regards,

Hi,

I got the MRV scan done at NM medical Bandra, I'd given them Dr. Hacke's protocol for study, and after some time they agreed to do it sa per it.

The Radiologist there is Dr. Sangeeta Singh, mail id 'sangeetabsingh@gmail.com and their website is ttp://nmmedical.com/home.html

Let me kno if u need more info..

Sunny

Hi Manoj,

Thanks for the info.
Did you need a reference from your GP or other Dr for NM to accept doing this test?
Also, can you or someone help me located Dr. Haacke's protocol (I dont seem to find it, got Dr. Dake's protocol though)

Also, the NM is present in Blore also, that it would be easier to pursue them.

Thanks,[/b]

Dr. prescription is not really necessary,e I can give u the website from where u can download the protocol.

http://ms-mri.com/potential.php

Cheers
Sunny

Can Manoj/someone clarify if this is the protocol (taken from http://ms-mri.com/potential.php page) since I dont see mention about Dr. Haacke anywhere.
Or there is a link on this page called "MS protocol"
Should I be printing that one?

Potential protocols

This section provides a list of potential sequences that can be used to collect data on arteries, veins, flow and iron content in the body for the CCSVI/SWI study.

The radiologist will know how to run the following scans:

# a 2D time-of-flight MRV through the head and neck down to the subclavian

# a time resolved MRA/MRV of the head and neck coronally to the aortic arch

# flow quantification through the straight sinus, the jugular (upper and lower) and coronally through the jugular/subclavian and brachiocephalic veins in one plane, to check for reflux flow and slow flow

# SWI if available to check for the small venous structures and iron content


PLEASE NOTE THAT ALTHOUGH THESE PROTOCOLS COME FROM A SIEMENS SCANNER THEY ARE VALID FOR ALL MANUFACTURERS SYSTEMS