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 TOOLS now at 7 Clinics?

Postby Cece » Sat Jun 02, 2012 10:42 am

Where is Dr. Siskin to analyze this? I believe the increase in doctors using IVUS may be a direct outcome of the interest among patients in IVUS, which is a direct outcome of Dr. Sclafani educating us about his use of IVUS.

(Dr. Siskin has been publishing on the role of social media in the evolution of CCSVI treatment, that's why I mentioned him.)
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Re: GOLD STANDARD TOOLS now at 7 Clinics?

Postby JohnAm » Sun Jun 03, 2012 6:52 am

Mark,

I believe that the new clinic i Poland, Medicover, is considering or using IVUS. http://www.medicover4you.com/ (not intended as advertisement).


Personally I would only go to a clinic/hospital with an IR experienced with IVUS (which I did).

Thanks Dr Sclafani for publishing the new paper on the topic!

---
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Re: GOLD STANDARD TOOLS now at 7 Clinics?

Postby MarkW » Thu Jun 07, 2012 7:31 am

Cece wrote:Where is Dr. Siskin to analyze this? I believe the increase in doctors using IVUS may be a direct outcome of the interest among patients in IVUS, which is a direct outcome of Dr. Sclafani educating us about his use of IVUS. (Dr. Siskin has been publishing on the role of social media in the evolution of CCSVI treatment, that's why I mentioned him.)

I am more of a cynic Cece, I predict the greater use of diagnostic tools (IVUS, MRV etc) to cover IRs against lawsuits in the USA. This is a consequence of the FDA actions, after which IRs must show they have adopted leading practice or risk a lawsuit if there are problems. I hope that all West Coast practitioners and the CCSVI Alliance say that IVUS is required for a complete diagnosis. That would be a major change.
MarkW
Last edited by MarkW on Thu Jun 07, 2012 7:41 am, edited 1 time in total.
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
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Re: GOLD STANDARD TOOLS now at 7 Clinics?

Postby MarkW » Thu Jun 07, 2012 7:36 am

JohnAm wrote:Mark,
I believe that the new clinic i Poland, Medicover, is considering or using IVUS. http://www.medicover4you.com/ (not intended as advertisement).
Personally I would only go to a clinic/hospital with an IR experienced with IVUS (which I did).
Thanks Dr Sclafani for publishing the new paper on the topic!---

Thanks for the info JohnAm. I will keep a watch on Medicover, Poland. Currently, they do not appear to offer IVUS to all patients.
MarkW
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
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GOLD STANDARD TOOLS at Excel Hospital?

Postby MarkW » Tue Jun 26, 2012 8:02 am

I just noticed that Tina J is challenging the use of repeat venoplasty on CCSVI locator. Does anyone know what Excel Hospital does??
MarkW
PS I know that this thread needs updating but I am on vacation.
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
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GOLD STANDARD TOOLS at Excel?

Postby MarkW » Fri Jun 29, 2012 5:57 am

I read that Excel does 'angioplasty'. Which tools and methods do they use?? Anyone know??
MarkW
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
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IVUS is important

Postby MarkW » Wed Aug 29, 2012 3:34 am

Dr. Neville's research using IVUS

Postby Cece » 29 Aug 2012, 04:50
I can't imagine that we haven't discussed this but I could not find any such thread. This is from Dr. Neville at Georgetown, published in Feb 2012, and involved imaging and treatment of CCSVI.

http://www.jvascsurg.org/article/S0741-5214(11)02751-0/fulltext

This study describes initial observations of imaging the cervical venous circulation in patients with MS. There were a substantial number of patients with venous abnormalities; however, there was no comparative normal group. IVUS was critical in differentiating true abnormalities from venous valvular phenomena, which may prove essential in guiding intervention if a causal relationship is proven.
Last edited by MarkW on Wed Aug 29, 2012 8:43 am, edited 1 time in total.
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
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IVUS IS GOLD STANDARD TOOL

Postby MarkW » Wed Aug 29, 2012 5:37 am

Thanks Cece for your post. You have reminded me that the clinics thread needs to be updated.
MarkW
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
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Re: GOLD STANDARD TOOLS now at 7 Clinics?

Postby MarkW » Wed Aug 29, 2012 8:37 am

Latest info..................MarkW
======================================
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 28-August-2012 are that these 7 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
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.
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
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Re: IVUS IS GOLD STANDARD TOOL

Postby Cece » Wed Aug 29, 2012 9:15 am

MarkW wrote:Thanks Cece for your post. You have reminded me that the clinics thread needs to be updated.
MarkW

I had thought of this thread when I posted Dr. Neville's IVUS research. Thanks for bringing it over. And Dr. Neville's conclusion was the usual conclusion we hear from IRs using IVUS, that it played a critical role and may be essential.

We heard from a TiMS poster that EHC has stopped performing CCSVI procedures for the time being. I have not verified this but if true, we are down from seven to six again.
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Re: IVUS IS GOLD STANDARD TOOL

Postby MarkW » Fri Aug 31, 2012 11:06 am

Cece wrote:I had thought of this thread when I posted Dr. Neville's IVUS research. Thanks for bringing it over. And Dr. Neville's conclusion was the usual conclusion we hear from IRs using IVUS, that it played a critical role and may be essential.
We heard from a TiMS poster that EHC has stopped performing CCSVI procedures for the time being. I have not verified this but if true, we are down from seven to six again.

I spoke to Donald Reid after the NICE guidance and he said that EHC are continuing to offer therapy. The post was incorrect.
MarkW
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
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Re: GOLD STANDARD TOOLS at 7 Clinics, any more?

Postby Cece » Fri Aug 31, 2012 11:53 am

Great news, Mark. Phew.
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GOLD STANDARD TOOLS any more Clinics?

Postby MarkW » Thu Sep 13, 2012 8:32 am

I saw a comment (not on this site) that Dr Mike Arata now uses IVUS. Can anyone confirm/deny and give details?
MarkW
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
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Re: GOLD STANDARD TOOLS at 7 Clinics, any more?

Postby JohnAm » Thu Sep 13, 2012 10:34 am

Mark,

maybe you can ask him via his page on Facebook "Mike Arata" or ask the group "Newport Beach/ Costa Mesa CCSVI" on FB.


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Re: GOLD STANDARD TOOLS at 7 Clinics, any more?

Postby MarkW » Mon Sep 17, 2012 4:47 am

JohnAm wrote:Mark,
maybe you can ask him via his page on Facebook "Mike Arata" or ask the group "Newport Beach/ Costa Mesa CCSVI" on FB.
---

Hello JohnAm,
I am not an FB user. I am hoping that pwMS will provide reports. Or the clinic will post here or pm me.
MarkW
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
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