GOLD STANDARD TOOLS for diagnosis at 8 Clinics, any more?

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

Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Wed Oct 12, 2011 2:01 pm

Lassy wrote:
Sorry Mark to add then to your list of Dr's that use IVUS
Dr Micheal Arata
Dr Joseph Hewett
Dr Todd Harris
Dr Nina Grewal
Newport Beach, California

MarkW asks:
Please confirm that IVUS is used on all pwMS as part of your standard diagnosis. Information on the number of procedures by each interventionalist, plus veins investigated is essential for pwMS to choose the right clinic.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Thu Oct 13, 2011 2:16 pm

I have not added Interventionalists from SynergyHealthConcepts to my gold standard list. My understanding is that SHC does not use IVUS with every patient, prefering MVI/MRV.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Thu Oct 13, 2011 2:19 pm

Using the correct tools is vital for a complete diagnosis. However this is causing bad tempered discussion. I have not circulated the data I have collected on the veins to investigate..............another story.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby Cece » Thu Oct 13, 2011 3:23 pm

MarkW wrote:I have not added Interventionalists from SynergyHealthConcepts to my gold standard list. My understanding is that SHC does not use IVUS with every patient, prefering MVI/MRV.

MarkW

This is my understanding as well.
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Only 6 clinic use the best diagnostic tools in all pwMS ???

Postby MarkW » Mon Oct 17, 2011 2:33 am

Only five clinics use the best diagnostic tools in all patients are my findings on 17-October-2011. Pretty frightening when I hear that over 15,000 pwMS have spent their scarce money on 'CCSVI procedures'.
I am simply trying to help pwMS obtain a full diagnosis !!! this is our first step.

MarkW
Last edited by MarkW on Mon Oct 17, 2011 10:08 am, edited 1 time in total.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby Cece » Mon Oct 17, 2011 7:33 am

I only count five.
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Counting Skill ???

Postby MarkW » Mon Oct 17, 2011 10:11 am

The good news is that I do not practice in Community Pharmacy........................Thanks Cece...................MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Sat Oct 29, 2011 3:43 pm

Just to remind people who seem to be spending time discuss treating CCSVI syndrome that before treatment comes diagnosis. It seems there are only 5 clinics in the world that can offer full diagnosis. Treating CCSVI syndrome before a full diagnosis is obtained is likely to mean that multiple treatments are required. This happened to me, my first procedure (Athens June 2010) opened 4 problems. Next procedure (Brooklyn June 2011) treated 3 different problems and confirmed that my Athens treated veins are 'patent'. If you can only afford one procedure I advise that you think carefully about your choice of clinic, they could miss problems by not using the correct tools.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby CureOrBust » Sat Oct 29, 2011 5:58 pm

MarkW wrote:... before treatment comes diagnosis. It seems there are only 5 clinics in the world that can offer full diagnosis...
I too have been diagnosed and treated in Brooklyn, and I was actually surprised that they were using the ultrasound equipment that was specifically developed with Dr Zamboni. Not that they automatically would know how to use it properly, but surely they have sold more than 5 of these around the world?
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby gibbledygook » Sun Oct 30, 2011 2:10 am

It would be nice to know those doctors who also examine the iliac and renal veins, as well as the azygous and jugular veins. Dr Reid in Edinburgh does not currently examine the aforementioned as a matter of course and one may have to request a special venogram/IVUS exam to check these veins.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby Cece » Sun Oct 30, 2011 10:54 am

I agree that who checks which veins is important information. Let's make a new thread for that so this one can stay focused on IVUS diagnostics. Cure, I remember seeing the doppler ultrasound in Brooklyn! I got excited over it being the Zamboni one. I'm a CCSVI geek that way.... But this thread is about who uses intravascular ultrasound as a diagnostic tool. Intravascular ultrasound is not the one done on your neck noninvasively. Intravascular ultrasound is the tiny little doppler "camera" that gets threaded over the guidewire that goes through your veins to the jugular vein and takes soundwave images from the inside of the vein itself. It is known to be the best way to image intraluminal abnormalities. It is more commonly used in heart patients. Since CCSVI is primarily a condition of intraluminal abnormalities, as seen in Dr. Fox's recent autopsy study and in Dr. Zamboni's ground-breaking work, IVUS is an ideal tool for finding the CCSVI stenoses in our veins, not missing any, and diagnosing them correctly as a septum or a valve or a hypoplasia or a membrane.
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Mon Oct 31, 2011 2:49 am

gobbleygook wrote: It would be nice to know those doctors who also examine the iliac and renal veins, as well as the azygous and jugular veins. Dr Reid in Edinburgh does not currently examine the aforementioned as a matter of course and one may have to request a special venogram/IVUS exam to check these veins.

When I started this thread I thought of informing people of the the tools (catheter venogram and intravascular ultrasound) plus the veins that needed checking. My objective was to ensure that pwMS asked for the full diagnostic procedure. I dropped the veins that needed to be checked as the list is growing very quickly and I thought it was too much info for the thread. I already see that details on the tools are needed (Thanks Cece for explaining IVUS, I thought this was understood by most people !).
Let me know what is most helpful for most people and I will collect the info and update the thread.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby CureOrBust » Mon Oct 31, 2011 3:24 am

Cece wrote:...I remember seeing the doppler ultrasound in Brooklyn! I got excited over it being the Zamboni one. I'm a CCSVI geek that way.... But this thread is about who uses intravascular ultrasound as a diagnostic tool...
I understand the difference between IVUS and Doppler exams, but reading the thread title as being "Diagnostic Tools" I definitely would of thought that the US doppler exam IS a diagnostic tool, crude though it may be in comparison to the more invasive IVUS.
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GOLD STANDARD - diagnostic tools ?

Postby MarkW » Mon Oct 31, 2011 3:38 am

Hello CureOrBust,
Being a pedantic person I call the external Doppler Ultrasound a screening tool and the internal Intravascular Ultrasound (with catheter venography) a diagnostic tool. The doppler US is very useful in the hands of a skilled person but only gives results where bones do not interfer with the scan. The IVUS also requires a skilled operator and investigation of many veins and is invasive.
Hope this helps,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby Cece » Mon Oct 31, 2011 7:48 am

CureOrBust wrote:I understand the difference between IVUS and Doppler exams, but reading the thread title as being "Diagnostic Tools" I definitely would of thought that the US doppler exam IS a diagnostic tool, crude though it may be in comparison to the more invasive IVUS.

That makes more sense than you not knowing what ivus is (sorry!). I would have thought of plethysmography as screening, doppler as diagnostic, and ivus as part of the procedure. But it makes sense that the diagnosing or identifying of the issues continues during the venogram, up to the point of the ballooning itself.
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