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 used at only 5 Clinics?

Postby MarkW » Sun Apr 08, 2012 12:45 am

Thanks for the info David1949:
"Dr. Ferral has moved to the NorthShore University HealthSystem in Evanston Il"
I will update the first page.
MarkW
Last edited by MarkW on Sun Apr 08, 2012 12:57 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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GOLD STANDARD TOOLS used at only 5 Clinics?

Postby MarkW » Sun Apr 08, 2012 12:54 am

My study of the data says that unless an invasive diagnostic procedure using CATHERTER VENOGRAPHY and INTRAVASCULAR ULTRASOUND in combination and performed by an EXPERIENCED INTERVENTIONALIST is used, 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.

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
UK (Scotland)........Edinburgh....................Mr Donald Reid.................Essential Health Clinic

Corrected on 08 April 2012
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 TOOLS used at only 5 Clinics?

Postby Linda2006 » Fri Apr 13, 2012 7:07 pm

According to the Hubbard Foundation this clinic Vascular Access Center of Durham is highly recommended....does that mean they do not use the "gold standard"? How do I find out?

vascularaccesscenters.com

Vascular Access Centers
3624 Shannon Road #104
Durham, NC 27707
(919) 251-6605
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GOLD STANDARD TOOLS in use ???

Postby MarkW » Sat Apr 14, 2012 2:25 am

Linda2006 wrote:According to the Hubbard Foundation this clinic Vascular Access Center of Durham is highly recommended....does that mean they do not use the "gold standard"? How do I find out?

Hello Linda,
I scanned the website www.vascularaccesscenters.com and did not see IVUS mentioned. My advice is to "ask the clinic about the doctor and details of the procedure". If IVUS is not used then it is possible that stenoses will be missed and an incorrect balloon size used (read this thread for details).
I disagree with the Hubbard Foundation as it does not insist that Intravascular Ultrasound (IVUS) is used. If you are paying for the procedure I recommend you choose a clinic using 'gold standard' tools (I think there are some using IVUS not on my list). If you are limited in your choice by your insurance company that is a different matter.
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
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby Cece » Sat Apr 14, 2012 8:12 am

The Hubbard Foundation was specializing in MRIs and meditation up until 2010. They are contributing to the field of CCSVI, and they seem to be good people. But their standards are not the standards I would choose in choosing which clinic to have a procedure.
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Hubbard's tools and IRB

Postby MarkW » Mon Apr 16, 2012 3:59 am

Cece wrote:The Hubbard Foundation was specializing in MRIs and meditation up until 2010. They are contributing to the field of CCSVI, and they seem to be good people. But their standards are not the standards I would choose in choosing which clinic to have a procedure.


I agree Cece. The danger I see for pwMS is that the IRB gives the impression that it uses gold standard tools. The Hubbard IRB does not mandate IVUS so it uses a non gold standard method.
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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CCSVI method submitted to NICE on 12th October 2011

Postby MarkW » Mon Apr 16, 2012 4:09 am

I submitted to NICE last year. Hopefully it will help pwMS understand what they should be asking for when seeking a clinic.
MarkW
---------------------------------------------------
Leading practice comes largely from the USA, with unpublished findings developing at a rapid pace. I monitor these communications and am sharing my understanding with NICE.
Best practice - October 2011:
A – Entry is best made through the saphenous vein rather than the femoral vein. This reduces the patient’s risk of a thrombosis in the femoral vein. Local anaesthesia is used. The puncture site is compressed manually at the end of the procedure, which is generally more successful than if the femoral vein was used.
B – A guide tube (called catheter tube in UK, sheath in USA) is advanced through the heart into the superior vena cava. The tube remains in place during the procedure and catheter, balloons and intravascular ultrasound (IVUS) are introduced, removed, and re-introduced many times through the tube.
C – Diagnosis of CCSVI syndrome requires the use of both catheter venography and intravascular ultrasound (IVUS). Latest research shows that some problems are missed if catheter venography is used alone (Abstract of CIRSE presentation).
D – Treatment is largely confined to venoplasty of vein valves in leading practice, which follows Prof Zamboni’s recent paper. This reduces, probably eliminating, vein dissection and vein rupture. This area requires future research before any CCSVI syndrome treatment procedure is finalized.
D - Correct sizing of the balloon in relation to the vein value being treated is best evaluated using IVUS. Pressure in the balloon of up to 20 atmospheres may be required, although lower pressure of up to 5 atmospheres is often sufficient.
E - Recording the valve or vein with IVUS, pre and post venoplasty, permits assessment of the outcome of each intervention.
F – Diagnosis of CCSVI syndrome must include major veins in the neck and trunk. CCSVI invasive diagnosis and/or treatment has included vena cava, transverse & dural sinuses, with internal jugular, azygous, hemi-azygous, iliac, and left renal veins, also being investigated.

Mark Walker
12th October 2011
---------------------------------------------------------------------------------------- 
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: Hubbard's tools and IRB

Postby Cece » Mon Apr 16, 2012 8:26 am

MarkW wrote:
Cece wrote:The Hubbard Foundation was specializing in MRIs and meditation up until 2010. They are contributing to the field of CCSVI, and they seem to be good people. But their standards are not the standards I would choose in choosing which clinic to have a procedure.


I agree Cece. The danger I see for pwMS is that the IRB gives the impression that it uses gold standard tools. The Hubbard IRB does not mandate IVUS so it uses a non gold standard method.
MarkW

Yes, exactly. There may be about a 25% chance of finding something on IVUS that had been missed without IVUS.
There is research underway using IVUS, so we will get more information as the research comes in. Just as there is research on CCSVI, and we continue to get more information. But if someone is choosing to get the procedure before all the research is in, that's when you look at the research that is available and says that, yes, Dr. Zamboni's original work and the recent single center experience studies all show improvement in a majority of patients after CCSVI treatment, and, yes, the abstracts that are out there on IVUS show that improvement in safety and diagnostics.

The other issue with the Hubbard IRB 'stamp of approval' is that a clinic cannot be said to be proficient in treating CCSVI until the doctor has treated a number of patients. CCSVI treatment has a learning curve, it is not easy. We have heard recently from the DIR clinic, which in part of the Hubbard registry, but I cannot recommend them due to their low number of patients treated as of today (4/16/2012). This is something that will change over the next several months, but it is good to let them gain their experience on other people, and there are many other providers who already have treated 200+ patients. This however is off-subject.
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GOLD STANDARD TOOLS at 2 European Clinics

Postby MarkW » Tue Apr 24, 2012 1:18 am

Hello Ragesht,
There are two clinics which are accessible by car from London.
Country...............Location.....................Interventionalist................Clinic
Belguim...............Aalst..........................Dr Beelen.......................OLV Hospital
UK (Scotland)........Edinburgh....................Mr Donald Reid.................Essential Health Clinic
I know people who speak well of both clinics.
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 TOOLS used at only 5 Clinics?

Postby Cinna » Thu Apr 26, 2012 1:26 pm

Mark,
I just received the following email from Ameds in Poland. They are now using IVUS and are checking the iliac and renal veins.


Dear Patients and Friends!
We are happy to inform that AMEDS Centrum physicians have started performing IVUS in the venous vessels in patients with CCSVI. After dr. Scalfani's publications we are doing complete investigation of venous system including the renal and iliac veins.

Intravascular ultrasound (IVUS) allows physicians to see images inside the heart and coronary arteries to assist with diagnosis. The primary benefit of IVUS is that it offers a tomographic, 360-degree view of the arterial wall from the inside, allowing a more complete and accurate assessment than is possible with angiography.

Our Medical Team and Patient Coordinators will gladly answer all your questions. Do not hesitate to contact us anytime.

Best regards,

Agnieszka Szczap
Coordinator


cid:image001.gif@01CD05D5.317FE290



AMEDS Centrum Sp. z o.o.
ul. Daleka 11
05-825 Grodzisk Maz., Poland
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GOLD STANDARD TOOLS at Ameds

Postby MarkW » Fri Apr 27, 2012 7:31 am

Hello Cinna,
I received the same email, which mixes veins and arteries. I will check details with Ameds and hopefully we will have 6 clinics offering a full diagnosis.
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 TOOLS used at only 5 Clinics?

Postby MarkW » Wed May 16, 2012 2:50 am

Bumped for markabc as promised.
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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GOLD STANDARD TOOLS used close to ND

Postby MarkW » Thu May 24, 2012 1:33 am

Bumped for Gardenia...................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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AMEDS is SIXTH Clinic?

Postby MarkW » Wed May 30, 2012 5:12 am

Coming Soon - AMEDS in Poland uses Venograms and IVUS. Details soon....................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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GOLD STANDARD TOOLS now at 7 Clinics?

Postby MarkW » Sat Jun 02, 2012 5:49 am

Dr Mike Arata at Synergy is now using both tools...............Will update after Jubilee holiday................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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