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 in Use at 5 Clinics

Postby milesap » Fri Mar 16, 2012 9:22 am

Dr Sclafani American Access Care in NY uses IVUS all the time
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Re: Gold Standard Tools in Use at 5 Clinics

Postby Cece » Fri Mar 16, 2012 12:21 pm

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

milesap, Dr. Sclafani is #1 on the list! :)
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Re: Gold Standard Tools in Use at 5 Clinics

Postby MarkW » Thu Mar 22, 2012 3:02 pm

Bumped for Seabea.........................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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MRV NOT GOLD STANDARD TOOL

Postby MarkW » Mon Mar 26, 2012 2:43 am

I have long doubted that MRV provided a definite test for all instances of CCSVI syndrome, especially webs and septums. Now a leading practitioner/expert plumber says so. I have inserted Dr Sclafani's post here. I hoped to have this debate before now, but it is crucial for pwMS to make the correct choice when spending their scarce money.
My Advice Summary:
-Stay as local as possible;
-Choose clinic using catheter venogram and intravascular ultrasound;
-Choose Doctor who checks many veins (not just 3) and does not damage veins or vein valves;
-Do not fly after de-stenosis;
-Take anti-coagulant;
-Take vit D3 and Omega 3.
Easy advice to give, difficult and expensive to get right first time. :!:
MarkW

drsclafani wrote:There is no evidence at all that mrv is the gold standard. doppler is great for screening of ccsvi and much cheaper. It also often shows the intraluminal pathology that is rarely seen by MRV. It also gives moderate, although underestimated size of the veins useful for interventionalists making decisions on balloon size.
But personally, i think that venography plus intravascular ultrasound is the gold standard because the combination allows simultaneous treatment, detects things that cannot be seen by other methods, and allows assessment of the renal vein, the ascending lumbar vein and the azygous vein. MRV does not.
And most assuredly yes, ccsvi does exist outside of ms
Good luck
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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Why IVUS ?

Postby MarkW » Mon Mar 26, 2012 3:03 am

Cece wrote:http://www.sirmeeting.org/index.cfm?do=abs.viewAbs&abs=2117
Intravascular ultrasound: key role in diagnosis of azygous arch causes of CCSVI

Presented During: Venous Interventions I
Sun, 3/25: 11:18 AM - 11:26 AM
S. J. Sclafani1, 2
Institutions:
1. American Access Care, Brooklyn, NY, United States. 2. SUNY Downstate Medical Center, Brooklyn, NY, United States.

Purpose:
The azygous (AZV) vein is an important component of the venous drainage of the cerebrospinal vasculature. It is the primary venous outflow for the spinal cord of the thoracic and lumbar spine and forms an outlet for cerebral venous drainage when there are outflow obstructions of the internal jugular veins (IJV) as seen in chronic cerebrospinal venous insufficiency (CCSVI). Detection of venous stenoses of the AZV is challenging because of artefacts due to mediastinal motion. Intravascular ultrasound does not suffer from this problem. The purpose of this study was to determine how often IVUS facilitates detection of AZV arch stenoses in patients with CCSVI.

Materials:
Thirty random patients with CCSVI detected by Neck and Transcranial Doppler ultrasound whose endovascular procedures detected AZV arch lesions were reviewed. In all patients IVUS followed venography. We retrospectively reviewed venography looking for stenosis, reflux and webs and IVUS looking for immobile valves, webs, or septum.

Results:
IVUS was abnormal in each patient. Immobile valves (30 patients), webs (1 patient) and septums (2 patients) were discovered. The most common finding on venography was reflux (19 patients) Stenoses were identified in 8 patients. Venography was considered normal, even in retrospect, in 8 patients.

Conclusions:
AZV lesions may be difficult to identify on venography. Findings are often nonspecific reflux of contrast media that does not allow precise angioplasty. IVUS appears to be the gold standard for the diagnosis of azygous causes of CCSVI.


In 8 out of 30 patients who had azygous lesions, those azygous lesions did not show up on venography. If any of those patients had gone to a doctor who did not use ivus, those lesions would have escaped detection, and the patient would have left not knowing that they still had CCSVI. Dr. Sclafani uses the word precise in his conclusions, which I think is an apt word, as the use of IVUS adds to the precision of the diagnosis and treatment of CCSVI. Eight out of 30 patients means that approximately 25% of people with azygous disease would have the type of azygous disease that would go undetected unless ivus is used. That is a high percentage.


Thanks for the post Cece. I have no financial interest in any of these 5 clinics, in case someone asks.
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 Luvsadonut » Mon Mar 26, 2012 4:02 am

Mark,
Sorry for going slightly off topic here but you said

-Choose Doctor who checks many veins (not just 3) and does not damage veins or vein valves;


As I understand it, when you have an immobile valve (as in my case), I thought the current standard procedure is to use the balloon to 'force' open the valve with the likely result being that the valve would stay permamently open..i.e damaging the valve.

If you would prefer not to answer my query on this topic would it be possible to PM me or start a new topic with your answer.

regards
Darren
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby DrCumming » Tue Mar 27, 2012 6:49 am

we definitely are ballooning the valves which are abnormal to begin with.
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Tearing Valves ?

Postby MarkW » Tue Mar 27, 2012 7:13 am

Hello Darren,
As Dr C said, they use balloons to open valves. I would discuss your procedure with an expert before tearing your vein valve open. The tear causes initial bleeding and the formation of scar tissue (think of a jagged cut on the skin). By causing bleeding of the valve you are risking the formation of a thrombus. There are plenty of instances on this site which demonstrate this is not good. Early in the development of destenosis the use of very large balloons was undertaken. If you are choosing a clinic which has IVUS they should be able to calculate the correct size balloon to use. Cheer has posted on not tearing valves so you could search on her posts.
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 » Tue Mar 27, 2012 10:15 am

We need to distinguish between the valve leaflets and the annulus of the valve. The annulus is the ring of the valve. The leaflets are what stick out from that ring and, if the valve were functioning, the leaflets would be the flaps that open and close.

In my case, I had the fixed leaflets in the valves in both my jugulars, and after ballooning the leaflets were weakened enough that they gave way and no longer blocked flow. The annulus, however, which is the ring of the valve, remained in place and was not damaged.

If the IR uses a very quick inflation technique, he might 'pop' the valve. You would hear an audible pop sound. You do not want to have this happen. Popping the valve means tearing the annulus. Tearing the annulus means scar tissue may form and it seems to do greater damage which may mean complications such as clotting or intimal hyperplasia or occlusion.

So, you can treat the valve leaflets without tearing the valve annulus. Dr. Arata at Synergy had been in favor of tearing the annulus. Dr. Cumming at HCMC and Dr. Sclafani at AAC had been in favor of not tearing the annulus. We haven't really discussed the issue in the last year so it is possible that stances have changed.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby munchkin » Tue Mar 27, 2012 12:02 pm

In all fairness, I think it's important to remember that over one year ago just about all of the IR's were tearing the annulus. Some of them started to change their technique around Jan/11. At one point many of the IR's were fond of over sized balloons for various reasons. Some of the IR's still do this, so as a patient you must be sure to ask the specific questions from the IR's you are considering and decide which one you feel comfortable with. It is important to get specific answers to your questions and not accept the quick easy answer. You do not want to have a clot or occlude in any vein, the results are not nice. We are having CCSVI done because we believe that blocked veins make our MS worse and a clot or total occlusion is really blocking blood flow.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby Luvsadonut » Fri Mar 30, 2012 4:24 am

thanks for your replies, I suppose the sensible route for myself would be to have the IR reassure me that the upmost care will be taken when forcing the valves to open. If that means a higher possibility of the valves closing again then so be it, as Im currently in full time employment and support the family I feel caution is key for me. If the procedure was to make my MS symptoms worse it would be a huge, huge blow.
thanks again for your replies.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby Cece » Sat Apr 07, 2012 2:19 pm

http://www.medpagetoday.com/clinical-co ... osis/31979
In a recent study that we published in Functional Neurology last year in December, we said that combination of the Doppler and the MRV is increasing sensitivity and specificity of those people who will go to the invasive diagnostic approach, and that's catheter venography and IVUS, to really have these problems, and I think that's the way to go, multimodal imaging.

Dr. Zivadinov, who is an early leader in CCSVI research, is in favor of IVUS used in combination with catheter venogram during the procedure.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby David1949 » Sat Apr 07, 2012 3:50 pm

Dr. Ferral is no longer at Rush. Dr. Arslan has taken over for him, and Dr. Arslan rarely uses IVUS. Dr. Ferral has moved . I can't remember where right now. I'll post it when it comes to me.
Last edited by David1949 on Sat Apr 07, 2012 3:57 pm, edited 1 time in total.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby David1949 » Sat Apr 07, 2012 3:56 pm

OK Dr. Ferral has moved to the NorthShore University HealthSystem in Evanston Il.
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Re: GOLD STANDARD TOOLS used at only 5 Clinics?

Postby 1eye » Sat Apr 07, 2012 7:26 pm

I almost think I should wait for a specific CCSVI device to be developed; a plastic (maybe gas-permeable) tube that has some special feature that discourages migration. Inside, it would contain a man-made valve to prevent reflux. Something like this is used for hydrocephalus, with a flow restriction device, so as to allow drainage of spinal fluid without emptying the brain of it (I think). My brother, who is now 50, had one put in when he was a newborn, into his jugular. Maybe us old folks would not be as successful as he was, due to older jugulars.

I think it would not be installable with a catheter, which is how metal stents are put in.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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