This Is MS Multiple Sclerosis Community: Knowledge & Support

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 24-September-2012 are that these 8 clinics are known to use the best diagnostic tools in patients including IVUS. The use of IVUS may involve an extra charge and should be agreed with the Interventionalist/Clinic. The clinics are:

Country...............Location....................Interventionalist...................Clinic
USA....................Brooklyn, NY...............Dr Salvatore Sclafani..............American Access Care
USA....................Evanston, IL.............. Dr Hector Ferral....................NorthShore University HealthSystem
USA....................Minneapolis, MN..........Dr Michael Cumming...............HCMC Hospital
USA....................Newport Beach, CA.......Dr Mike Arata.......................Synergy Health
Belguim...............Aalst........................Dr Beelen............................OLV Hospital
Poland................Grodzisk Mazowiecki .....Dr Zarebinski + Dr. Pawluczuk....Ameds Centrum
Poland................Warsaw.....................Dr Kielar + Dr Jaworski............Medicover Hospital
UK (Scotland)........Edinburgh...................Mr Donald Reid....................Essential Health Clinic

My personal recommendation is not to fly for 20 days after the procedure, especially if you have any incidence of thrombosis in your family.

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Just in case everyone does not know this, Dr S uses venograms and IVUS.
I was hoping other people would mention clinics, rather than leave the thread up to me.
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

It would be nice if the list were longer. The only other IR that I know who uses IVUS on every procedure is Dr. Michael Cumming, of HCMC hospital in Minneapolis, MN.

Hello Cece,
Thanks for the additional name/clinic. I was expecting people to post about clinics in Germany, Poland, West Coast US, India etc offering IVUS. It is not new technology, expensive equipment to purchase certainly but widely used by Vascular Surgeons so it could be shared in a clinic/hospital.
Let's see if there are more contributions, I hope so.
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Hi Mark,

There are other clinics in the US using IVUS - I think Detriech at Arizona Heart does. Sal would know more.

The IVUS unit is about 75k. Disposables are about $800/case. Plus an additional 30 minutes of room time. This adds significant costs to the procedure.

I think we should clarify some terminology.

I view the concept of CCSVI as abnormal or insufficient venous drainage of the central nervous system. In my opinion, we do not know what this is, since we do not know what normal is. The venous drainage is complex with multiple different pathways and other factors. I think the definition of what is normal and abnormal will come from something along the lines of Haake's MR work or something else that can truly quantify the entire venous drainage of the CNS.

Most of our current efforts at diagnosing and treating CCSVI are directed at the jugular and azygous systems. Again, we do not have a definition of what a normal jugular or azygous vein should look like or what is or is not a significant narrowing or what is adequate or inadequate venous drainage. We do not even have any criteria on how to measure stenosis in either vein. So we cannot even really make a diagnosis. What we have found, is that in many patients, the valve leaflets appear do not appear to open correctly. But, no one has ever defined how open the leaflets should be.

In my experience, and I think Sal would agree, all modalities we currently use have limitations. Certainly, conventional US is limited in many hands (hence all the studies claiming CCSVI doesn't exist). In my experience, after having done hundreds of US's, is that I am correct about 70% or so of the time when using US. IVUS and catheter venography combined seem to be the best at evaluating the azygous and jugular systems. Either alone will miss findings.

So, I might change the title of your thread to "who uses the best available tools to image the jugular and azygous veins"...

Thanks for your input Dr C. I amended my title.
Many people (interventionalists, neuros and pwMS) do not understand what is 'normal' for vein valves of neck and trunk, and it will take years for this to be documented. This is why I always call CCSVI a syndrome. With a syndrome you treat what is diagnosed, not only what is abnormal. I am at home with treating symptoms because that is what the pharmaceutical industry does most of the time, I realise that "treating a problem value just because it is diagnosed" is not usual for surgeons and IRs but welcome to the big pharma approach to medicine.
I will try to get details/confirmation of the Arizona clinic in the coming days.
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

In Aalst, Belgium i proposed using IVUS in addition to the venogram. The dr used IVUS and was enthousiastic about the results.
As far as i know, they use IVUS nowadays. (although building up experience is an issue.....)

Hello Rob,
Thanks for your info. Do you know about any clinics in Germany using IVUS ?
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Hello Cece,
Would you please re-post the reference to the Italian ? paper on why IVUS needs to be used on this thread. Otherwise some problems will be missed. I have mislaid it. It is important for pwMS choosing their clinic.
Many thanks,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

No, but you can always contact a clinic and explain the IVUS usage (i did that in Belgium)

Thanks Cece. This is important info for pwMS choosing their clinic..........MarkW.

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Here was a statement from Dr. Arata on IVUS. I think he is saying that he uses IVUS on a small percentage of cases that are more challenging, but does not use it routinely. Dr. Harris linked to an IRB that they are doing using a Volcano IVUS, which must mean they have one in the clinic now.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17138-30.html#p169962

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

FYI Dr Arata and Dr Hewett are also Phelbologists as well as IR's. Dr Arata has exstensive Neuro IR training and experience.

Hope that was what you meant you wanted to know.

Thanks Cece.
Getting down to basics = diagnose all the problems using catheter venography and IVUS and treat them all. Flow will be corrected by doing this. This can be checked by IVUS also Doppler US after the procedure.
Diagnosing CCSVI syndrome is step one.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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