Testing methods for CCSVI

[Stacey]

Hello Everyone,

I was approached by a venous center in Philadelphia re: having the CCSVI treatment performed, however their testing method is not the same as Dr. Zamboni's doppler method. They said they used to use it but it was very time consuming and now they use an injection that they refer to as the gold standard for mapping out the veins. She mentioned that there are 7 veins they look at. I asked her that if the results show I have some blockage what their next step would be and she said it would be to immediately do the venoplasty. Is this method an acceptable way to be tested? They have since moved to Trenton, NJ which is only about 90 miles from where I am in DE. If I need to go to Buffalo to have it done the proper way then I will do that.

I understand that if I do get the CCSVI treatment it will not cure my MS, however I am feeling positive from what I have researched for the last couple years that it can help with my symptoms especially the fatigue/cloudy thinking. I have always been so type A & driven, but MS has really changed that.

Thanks in advance for your comments!

[MarkW]

For a full nd complete diagnosis of CCSVI the two methods need to be used in conjunction. There are very few doctors using the two methods in conjunction, who are expert in the techniques. Dr Sclafani in Brooklyn is one and there are others. Careful use of Catheter Venography by an expert will diagnose most restriction in veins but some could be missed.

MarkW

[Cece]

I am trying to think what is meant by an injection to test for CCSVI.

The methods I know of are regular doppler ultrasound, Zamboni criteria doppler ultrasound, plethysmography (not in use outside of research), MRV venogram that is like an MRI but of the veins, catheter venogram which is the procedure itself, and IVUS which is intravascular ultrasound from within the veins during the procedure.

The most common way to be tested would be Zamboni criteria ultrasound. This is helpful too because then you have your 'before' ultrasound and can compare to any 'after' ultrasound for follow-ups.

MRV is out of vogue because of expense and it seems to be worse at identifying CCSVI when compared to doppler ultrasound. Both would seem to be inferior to the venogram itself.

[MarkW]

Hello Cece,
Let's be precise:
Catheter Venography uses a cetheter to inject dye which is detected by a venogram (x-ray).
Catheter Venoplasty use a balloon to dilate a vein.
The two would usually be performed in the same process.
I suspect this clinic is only performing Catheter Venoplasty for diagnosis and not using IVUS. Doppler scans are only indications on the neck veins and require specialist training so have issues.

Markw

[Cece]

That is precisely precise. Nicely done.

My guess, if it's a clinic in Trenton NJ, that this would be VAC of Dr. McGuckin and others. I cannot offhand remember what they're doing for diagnosis or procedure, other than that they do check and treat the renal and iliac veins, which I approve of, and that they do not use IVUS.

[pollyanna]

CeCe and others
Does Paolo not go in Lt groin and do the 5 you refer to?
When people now refer to Zaboni protocol, what are they exactly referring to?
Is the diagnostic gold standard venogram?
What is the Haake diagnostic protocol,
Who else besides Sclafani and McGuckin are doing Lt groin, 5 veins that has trackable research?
Thanks
Confused
Paul A

[Cece]

CeCe and others
Does Paolo not go in Lt groin and do the 5 you refer to?

Yes, although technically it is his partner Dr. Galleoti, as Dr. Zamboni has a neurological condition preventing him from doing procedures himself. He investigates the iliac, renal, azygous, both jugulars, and the ascending lumbars.

When people now refer to Zaboni protocol, what are they exactly referring to?

The Zamboni protocol is referring to the doppler ultrasound. Dr. Zamboni came up with five criteria to determine if someone has CCSVI using the ultrasound, against the neck. This is noninvasive, a testing method prior to the procedure.

What is the Haake diagnostic protocol,

Haacke protocol is a specific way of doing the MRV or MRI of the veins. It tries to capture flow data that is not seen on the standard MRV. This again is noninvasive and prior to the procedure. I had one done in November 2010 but did not get the procedure until February.

Who else besides Sclafani and McGuckin are doing Lt groin, 5 veins that has trackable research?

I am not entirely sure. Dr. Arata is not and Dr. Siskin is not. Whether it is necessary or not is debatable. But it is indeed the way Dr. Zamboni does it. That alone provides some incentive, to do things Dr. Zamboni's way, since 'Paolo' is a few years ahead of everyone else when it comes to CCSVI.

[Stacey]

As quoted by MarkW

"Let's be precise:
Catheter Venography uses a catheter to inject dye which is detected by a venogram (x-ray).
Catheter Venoplasty use a balloon to dilate a vein.
The two would usually be performed in the same process."

This is exactly what they will be doing. We just spoke with one of the doctors who works with Dr. McGuckin. The procedure takes about an hour. He told us that 2/3 of the patients have had positive results. 1/3 of the patients had no change. The recoup time is about 2 days. I think I will be getting this done!

Mark W & Cece.. thank you both so much for your comments!

God Bless

[Cece]

As quoted by MarkW

"Let's be precise:
Catheter Venography uses a catheter to inject dye which is detected by a venogram (x-ray).
Catheter Venoplasty use a balloon to dilate a vein.
The two would usually be performed in the same process."

This is exactly what they will be doing. We just spoke with one of the doctors who works with Dr. McGuckin. The procedure takes about an hour. He told us that 2/3 of the patients have had positive results. 1/3 of the patients had no change. The recoup time is about 2 days. I think I will be getting this done!

Mark W & Cece.. thank you both so much for your comments!

God Bless

Best wishes to you and I hope you will stop back and let us know afterwards how everything goes for you! I had it done too, I am in the two-thirds group with improvements, it was a very good choice for me.