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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.

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

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

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

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

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

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