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

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

German Clinic not using Gold Standard Diagnostic Tools

Postby MarkW » Sat Jan 21, 2012 9:04 am

I am disappointed that this clinic (advert in header) does not use IVUS.
http://www.ccsvi-center.com/?gclid=CJvz ... tAodzGbn0Q
They use MRV which is much more expensive equipment. However even the Haacke protocol does does claim to detect every septum or web. I have not seen claims that it gives the correct balloon size unlike IVUS. I hope they use IVUS very soon as I expect they have such a machine in such a clinic in Germany.

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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Advertisement

Re: Gold Standard Diagnostic Tools

Postby Cece » Sat Jan 21, 2012 12:10 pm

The word on IVUS is getting out. Three of the presenters on CCSVI on Thursday at ISET included a mention of IVUS with a question mark.

Just as CCSVI is a true condition and is therefore there to be seen and tested and treated and measured, so too if it is true that IVUS is a superior tool, that can be seen and tested and measured. It might take awhile but I expect both to be proven out.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: Gold Standard Diagnostic Tools

Postby DrCumming » Fri Feb 03, 2012 6:02 am

I was really disappointed with level of interest in IVUS. The panel of experts barely mentioned it and largely were skeptical that it added any benefit. I had a discussion with a few them afterwards and failed to convince them. Sal, we have an uphill battle to fight. Hopefully at the SIR workshop we are doing, we can convince IR's of its importance.
User avatar
DrCumming
Family Elder
 
Posts: 209
Joined: Sat Dec 25, 2010 3:00 pm
Location: Minneapolis, MN

Re: Gold Standard Diagnostic Tools

Postby Cece » Tue Feb 21, 2012 8:09 am

http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
from the ISNVD 2012 consensus document on catheter venography for the assessment of internal jugular veins and azygous vein:
11. The role for IVUS in the assessment of CCSVI
Should IVUS be an integral part of venography? What are advantages and disadvantages of such an approach?

Doctors who are using IVUS routinely have found this diagnostic tool to be incredibly helpful as an adjunctive to catheter venography. No matter how one manipulates contrast dilution or injection speed, venography does not come close to the sensitivity of IVUS in detection of endoluminal anomalies (septae, thrombus, chronic organized/recanalized thrombus, valvular anomalies, valve leaflet morphology, phasic venous anatomical variability, etc.). IVUS can be performed extremely safely with minimal change in guide catheters being utilized, fluoroscopy time and contrast volume. While many patients demonstrate venographic anomalies, IVUS yields many more anomalies, since CCSVI appears to be principally an endoluminal disease. Thus, a combination of venography and IVUS provides a comprehensive assessment of venous anatomy, endoluminal structures and flow, which would be inadequate with either technique by itself.

At the moment the use of IVUS is recommended for the diagnosing CCSVI. However, actual diagnostic value of this test should be evaluated by ongoing research. Of special importance will be the problem – whether the management of lesions that can be diagnosed only with IVUS and not with venography alone, will give an additional clinical benefit to the patients.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: Gold Standard Diagnostic Tools

Postby DrCumming » Tue Feb 21, 2012 8:43 am

Please add Hector Ferral in Chicago to the list.
User avatar
DrCumming
Family Elder
 
Posts: 209
Joined: Sat Dec 25, 2010 3:00 pm
Location: Minneapolis, MN

Now Six Clinics Offer IVUS

Postby MarkW » Tue Feb 28, 2012 12:39 pm

Thanks for the info, Dr C............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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Re: Now Six Clinics Offer IVUS

Postby drsclafani » Thu Mar 01, 2012 8:24 pm

MarkW wrote:Thanks for the info, Dr C............MarkW


Mark, this is the result of my survey on international practices

Image
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3147
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Re: Gold Standard Diagnostic Tools at 6 Centres

Postby MarkW » Sat Mar 03, 2012 4:52 am

Hello Dr S,
Do your replies permit you to say who is using IVUS and compare it with my list (top of thread) ? Am I missing just 2 clinics ?
My aim is simple = help pwMS spend their money wisely !!
I am disappointed by the 10 replies who have IVUS but do not use it.
Thanks,
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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Re: Gold Standard Diagnostic Tools at 6 Centres

Postby Cece » Sat Mar 03, 2012 7:47 am

I'm concerned about the 50% for whom ivus is not available! If and when research showing that ivus is the gold standard for CCSVI is completed, will those clinics incorporate ivus, despite the expense?

There is a learning curve to the use of ivus. Yes, I would challenge those who have ivus available but have never used ivus in CCSVI to pick it up and see what can be seen. If they heard at ISNVD that those who are using ivus find it essential, that may be reason enough to give it a try.

In the end, the goal is for each patient to have a safe and thorough treatment, and it has been proposed that ivus plus phlebography is the gold standard to achieve that.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: Gold Standard Diagnostic Tools at 6 Centres

Postby drsclafani » Sun Mar 04, 2012 10:46 pm

MarkW wrote:Hello Dr S,
Do your replies permit you to say who is using IVUS and compare it with my list (top of thread) ? Am I missing just 2 clinics ?
My aim is simple = help pwMS spend their money wisely !!
I am disappointed by the 10 replies who have IVUS but do not use it.
Thanks,
MarkW


mark, the survey is anonymous. almost all are in the US
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3147
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Gold Standard Centres in USA

Postby MarkW » Mon Mar 05, 2012 1:28 am

drsclafani wrote:
MarkW wrote:Hello Dr S,
Do your replies permit you to say who is using IVUS and compare it with my list (top of thread) ? Am I missing just 2 clinics ?
My aim is simple = help pwMS spend their money wisely !!
I am disappointed by the 10 replies who have IVUS but do not use it.
Thanks,
MarkW


mark, the survey is anonymous. almost all are in the US


Hello Everyone,
My USA list shows these clinics as regular IVUS users:
Country...............Location.....................Interventionalist................Clinic
USA....................Brooklyn, NY................Dr Salvatore Sclafani...........American Access Care
USA....................Chicago, Il...................Dr Hector Ferral................Rush University Medical Center
USA....................Minneapolis, MN............Dr Michael Cumming...........HCMC Hospital
USA....................Phoneix, AZ.................Dr Edward Dietrich.............Arizona Heart Institute

Hopefully somebody must know who the regular IVUS users are (PM me to supply private info).
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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Re: Gold Standard Centres in USA

Postby drsclafani » Mon Mar 05, 2012 8:57 am

MarkW wrote:
drsclafani wrote:
MarkW wrote:Hello Dr S,
Do your replies permit you to say who is using IVUS and compare it with my list (top of thread) ? Am I missing just 2 clinics ?
My aim is simple = help pwMS spend their money wisely !!
I am disappointed by the 10 replies who have IVUS but do not use it.
Thanks,
MarkW


mark, the survey is anonymous. almost all are in the US


Hello Everyone,
My USA list shows these clinics as regular IVUS users:
Country.............Location...................Interventionalist.............Clinic
USA..................Brooklyn, NY..............Dr Salvatore Sclafani.........American Access Care
USA..................Chicago, Il.................Dr Hector Ferral..............Rush University Medical Center
USA..................Minneapolis, MN..........Dr Michael Cumming.........HCMC Hospital
USA..................Phoneix, AZ...............Dr Edward Dietrich...........Arizona Heart Institute

Hopefully somebody must know who the regular IVUS users are (PM me to supply private info).
MarkW


dear Mark
it is my understanding that dr dietrich is no longer at Arizon Heart Institute and no longer treating ccsvi
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3147
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Re: Gold Standard Diagnostic Tools at 5 Centres

Postby MarkW » Fri Mar 09, 2012 1:58 am

Thanks Dr S for your update. I have amended my opening post on this thread to reflect your post. Any chance of convincing the other clinics in the USA to 'go public'?
Best wishes,
MarkW

MarkW wrote:People with MS and their carers must understand that unless an invasive diagnostic procedure using CATHERTER VENOGRAPHY and INTRAVASCULAR ULTRASOUND in combination and performed by an EXPERIENCED INTERVENTIONALIST your diagnosis does not meet the gold standard. Both tools are required to diagnose all occurances of CCSVI syndrome (including webs and septums) in your neck and trunk. IVUS is also a crucial tool for your Interventionalist to use in order to determine the correct size of balloon for your vein valve.

I realise that many pwMS are struggling financially to have the diagnosis and are spending their scarce savings on this procedure. If you can only afford one procedure I hope you can get to one of these clinics. My findings on 09-March-2012 are that only five are known to use the best diagnostic tools in all patients. These are:

Country...............Location.....................Interventionalist................Clinic
USA....................Brooklyn, NY................Dr Salvatore Sclafani...........American Access Care
USA....................Chicago, Il...................Dr Hector Ferral................Rush University Medical Center
USA....................Minneapolis, MN............Dr Michael Cumming...........HCMC Hospital
Belguim...............Aalst..........................Dr Beelen.......................OLV Hospital
UK (Scotland)........Edinburgh....................Mr Donald Reid.................Essential Health Clinic
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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

No IVUS in use at Dayton IR

Postby MarkW » Tue Mar 13, 2012 2:38 am

I asked Dayton IR about IVUS but it appears IVUS is not used. I advise pwMS to choose a 'gold standard' clinic if possible, especially if you cannot afford more than one procedure.
MarkW

MarkW wrote:Thanks for your information. However I am a pedant who seeks to give pwMS the best info when choosing an Interventionalist for the procedure.
For diagnosis to be 'gold standard' (see my thread) it must involve invasive Catheter Venography and Intravascular Ultrasound (IVUS) to detect valve issues plus webs and septums. Your website does not say which diagnostic tools you use, please update us. (I realise that Prof Haacke uses MRV to detect issues but that is extremely expensive equipment usually only available in a research setting, not clinics. MRV has not been shown to detect all webs and septums but IVUS will detect webs and septums in veins).
Your website says the procedure takes about an hour but does not say which veins are inspected. My personal experience and information from other patients leads me to conclude that one hour is too short for a full diagnosis, please clarify.
I realise that many Interventionalists only inspect the jugular veins (left and right) and the azygous veins (azygous and hemi-azygous). My estimate is that this will detect 80% of issues but many other veins exhibit issues in some patients. This under inspection leads to under-treatment in some patients. It is not a problem for people who can afford many procedures but for most pwMS the CCSVI procedure is a one-off event.
As Cece notes starting inspection as the veins leave the skull is important in order to reduce the possibility of under-treatment. I suspect that this is well within the comfort area of a neuroradiologist.
Detailed questions I know but my aim is that pwMS know what they are paying for.
Kind regards,
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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Re: Gold Standard Diagnostic Tools at 5 Clinics

Postby Pepe » Thu Mar 15, 2012 8:39 am

Hi all,

Here you are some slides with the experience of Dr. Hector Ferral:

http://www.cdyte.com/es/medios/publicac ... experience

Regards,

Pepe Martínez
Spain
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
User avatar
Pepe
Family Elder
 
Posts: 141
Joined: Sat Oct 17, 2009 2:00 pm

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