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 - diagnostic tools ?

Postby CureOrBust » Tue Nov 01, 2011 1:30 am

MarkW wrote:Being a pedantic person I call the external Doppler Ultrasound a screening tool and the internal Intravascular Ultrasound (with catheter venography) a diagnostic tool.
Pedantic is good, and I agreed with you at first, but then I remembered, that Dr Sclafani used the venogram, followed by an IVUS on me, then treated what he had found, BUT, THEN, after treating me while still on the table, he actually checked / confirmed via a doppler US that he was satisfied the veins were flowing correctly. Now, I am sure if he was to drop one method, it would be the final US, but the fact that he used it within the treatment, just may raise it above a "screening" tool.
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Tue Nov 01, 2011 7:08 am

Hello CureOrBust
The Doppler US can be used as a screening tool and as a diagnostic tool. In the hands of a skilled person it can be used to diagnose CCSVI in general (eg restricted veins in the neck or back flow). However neuros are using doppler US to show CCSVI does not exist so we need to be careful how we define it. In your case I would say that Dr S used it as a screening or checking tool at the end of your procedure. It shows that the ballooning of vein valves he undertook treated your CCSVI problem. I will try to summarise these ideas in the coming days, as there is a need to be precise or the neuros will misuse what we say.
MarkW
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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 - diagnostic tools ?

Postby Cece » Tue Nov 01, 2011 10:47 am

CureOrBust wrote:Pedantic is good, and I agreed with you at first, but then I remembered, that Dr Sclafani used the venogram, followed by an IVUS on me, then treated what he had found, BUT, THEN, after treating me while still on the table, he actually checked / confirmed via a doppler US that he was satisfied the veins were flowing correctly.

I wish everyone was as thoroughly checked out as you were.
It is possible in some scenarios that the catheter itself might hold open the valve or obscure a lesion if it's flap-like and can be lifted away which gives the appearance of good flow. So that is a scenario where an on-table doppler could be of benefit, if the catheter is withdrawn from the vein.
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Re: GOLD STANDARD - who uses the best diagnostic tools ?

Postby MarkW » Tue Nov 08, 2011 3:55 pm

Thanks Cece and bump....................MarkW
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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 Diagnostic Tools

Postby MarkW » Wed Nov 23, 2011 9:59 am

I hear from other threads that Dr Mike Arata is testing the use of IVUS on some patients. Also that 38% of stenoses are missed if IVUS is not used. Please add info on this thread. "Going to a clinic with IVUS costs more" but is worth in my view.
MarkW
Last edited by MarkW on Thu Dec 01, 2011 4:59 am, edited 2 times in total.
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Mark's CCSVI Report 7-Mar-11:
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IVUS - one of the Gold Standard Diagnostic Tools

Postby MarkW » Thu Dec 01, 2011 4:56 am

With apologies to Dr S but my one line synopsis of his explanation is:
IVUS is needed for gold standard diagnosis, the upper IJV is an example.
MarkW

http://www.facebook.com/Sal.Sclafani.MD ... 8890834465
A link to a very in-depth answer from Dr. Sclafani over on his Facebook page.
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 Diagnostic Tools

Postby Cece » Sat Dec 03, 2011 11:28 am

I also think the upper IJV is a very bad place to get an inappropriately placed stent, due to misdiagnosis of a physiological stenosis, due to not using IVUS to see if the upper IJV can distend under certain maneuvers such as valsalva.

It was an excellent in-depth answer from Dr. Sclafani, that showed some of the complexity of CCSVI treatment. Use IVUS, check for phasic vs persistent narrowing, treat the lower narrowings, check again at the upper narrowing, check the dural sinuses for jugular/sinus continuity, check for condylar emissary veins to distinguish between hypoplastic and recanalized thrombosis, consider the patient's ability to return for follow-up care, consider possible ramifications of stents in the upper jugular ... you can see the decision tree sprouting through the answer, and different decisions possible at every branch.

But I am posting about his IVUS abstract, that he has just posted to his Facebook account, which shows that in patients with azygous disease, 8 out of 30, which is 27%, have stenosis that is undetectable by flouroscopy. In these patients, their azygous stenosis was only seen on IVUS and would have gone untreated if the IR did not use IVUS.

If we estimate that 40% of patients have azygous stenosis, which is a guesstimate and I hate starting off with fudged numbers like that, but if we estimate this, then 27% of those 40% means that approximately 10 out of every 100 patients will have an azygous stenosis that would go untreated if IVUS were not used.

Check out the abstract: http://www.facebook.com/Sal.Sclafani.MD
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Dr S on IVUS a Gold Standard Diagnostic Tool

Postby MarkW » Fri Dec 09, 2011 11:08 am

Dr S's paper on IVUS a Gold Standard Tool, which is used in combination with catheter venography. This reduces the rlsk of veln lnjury during angioplasty.
Any questions please ask Dr S on his thread.
MarkW

TITLE: High pressure balloon angioplasty to treat internal jugular vein stenoses in patients wlth CCSVl
AUTHORS: Sclafani Salvatore JA, Zhang, Karl
INSTITUTIONS: 1. American Access Care, Brooklyn, NY, United States. 2. Radiology, SUNY Downstate Medical Center, Brooklyn, NY, Umted States.
PRESENTATION TYPE: Original Scientific Research - Oral
CURRENT CATEGORY: Venous Interventions: Other
KEYWORDS: Venopiasty, multiple sclerosis , veins.
ABSTRACT BODY:
Purpose
The nature of Internal Juguiar Vein (IJV) obstructions associated with chronic cerebrospinal venous insufficiency (CCSVI) is not well established, but it appears to be different from those stenoses caused by thrombosis,recanalization, scarring, tumor encasement and access intimal hyperplasia. We sought to determine the balloon sizes and pressures that were necessary to attain complete distension of IJV obstructions due to CCSVI.
Materials and Methods
The records of all patients undergoing endovascular treatment of CCSVI were reviewed. Angioplasty was based upon venographic findings such as stenosis >50%, stasis, reflux, collaterals or upon intravascular ultrasound (IVUS) findings, such as cross sectional area stenoses (CSA)>50%, immobile valves, septum, membranes or webs
Balloon sizing was initially calculated by vlsual estlmatlon, but converled to IVUS measurement of CSA. . lnflatlon endpolnts were ellmlnalion of balloon waist wlthout recoll or exceedlng rated burst pressure. Balloon size and maxlmum pressure were recorded. Compllcatlons were revlewed.
Results :
93% of 150 treated patients underwent angioplasty of 239 lJVs. 82% recelved bllateral angloplasty. Balloons used were sllghtly larger ln dlameter on the rlght (avg. 15.8mm, range 10-20mm) than on the left (avg 14.4mm range 8-20 mm). Endpoint pressure requlrements averaged 12.7 Atmospheres (range 4-25 atm) on the rlght slde and 13.2 atm (range 6-23 atm) on the left slde.
There were three balloon ruptures, two occurred during removal from the sheath.There were three dissections, two perforations and ten thromboses (6.3% of treated veins). All but one dissection and one thrombosis occurred prior to using IVUS CSA for balloon selection. Complication rate of 16% using visual estimation was reduced to 1.3% using IVUS CSA measurements.
Conclusion :
1. Hlgh pressures are requlred to completely dilate the lesions of CCSVI.
2. IVUS reduces rlsk of veln lnjury during angioplasty.
======================================
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 Diagnostic Tools

Postby MrSuccess » Fri Dec 09, 2011 2:11 pm

IVUS is expensive. From what I gather .... an extemely powerful tool for surgical planning and exploration. It is a " one time only " medical device. This is why it is so important to be able to diagnose as accurately as possible CCSVI locations.

And it now appears Dr Dake is causing some excitement with his doppler tools.I think Ringleader almost pee'd her pants ....... :lol:

This thing just keeps getting better ........




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Re: Gold Standard Diagnostic Tools

Postby Cece » Fri Dec 09, 2011 2:47 pm

The IVUS machine costs around $100,000. The disposable, one-time-use IVUS ultrasound catheters cost around $500 each. If you happen to be one of the people with stenoses that cannot be diagnosed without IVUS (and I estimated elsewhere, based on limited data, that this is about 10% of us), then IVUS is invaluable. Also if your veins aren't perfectly round, which veins aren't, IVUS is invaluable in getting an accurate measurement of the veins, to properly size the balloon, to prevent damage due to oversizing or recoil due to undersizing.
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5 Clinics Offer Catheter Venograms and IVUS for diagnosis

Postby MarkW » Mon Dec 19, 2011 10:44 am

When deciding on your clinic please consider what the clinic offers as diagnostic tools.
Recent research in Italy says over 30% of stenoses are missed if IVUS is not used.
Please do not fly after any de-stenosis procedure as you increase your risk of thrombosis.

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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Dr Makris does use IVUS

Postby MarkW » Mon Dec 19, 2011 4:53 pm

I asked:
Please let the forum know if Dr Makris uses IVUS or not.
Donnchadh replies:
he did not with my procedure and if not mistaken he does not use it at all in his normal practice.
When I asked him about the possible use of IVUS, he said the corporate suits resisted the idea on cost considerations. If it was up to him, I think he would like to be able to use it.
I am becoming more and more convinced that Dr. Sclafani is correct about the usefulness of IVUS.
Thanks for the info Donnchadh, we need more use of IVUS and catheter venography. The research from Italy (posted by Cece) showed that over 30% of cases are missed without IVUS.

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 - who uses the best diagnostic tools ?

Postby Cece » Mon Dec 19, 2011 5:30 pm

Cece wrote:http://abstracts.webges.com/myitinerary/session-10035.html?congress=cirse2011#.Tmz8Vbsjpx0.facebook
Cece wrote:
Presentation Time: 2:00 PM - 2:00 PM

Pres. No.: P-492 - Usefulness of IVUS in diagnosis of chronic cerebrospinal venous insufficiency and multiple sclerosis

M. Stefanini, S. Fabiano, C. Del Giudice, C.A. Reale, S. Marziali, V. Cama, R. Gandini, G. Simonetti
Rome/IT

Purpose:
Chronic cerebrospinal venous insufficiency (CCSVI) is a cerebrospinal venous disease that recently has been considered related to multiple sclerosis. Diagnosis may be performed by Doppler ultrasonography and angiography. One limit of angiography is the lack of visualization of venous wall aspects. We investigated in our study the usefulness of IVUS to detect CCSVI anomalies.

Material and Methods:
From September 2010 and January 2011, 13 patients with multiple sclerosis and CCSVI, evaluated by Doppler US, were enrolled in this study. Venography was performed through a left transfemoral retrograde access with 5 Fr introducer sheet. Venography and IVUS control was performed at ileo-lumbar level, bilateral jugulars and azygos vein.

Results:

All patients showed a stenosis of at least one vein. In all cases IVUS confirmed flebographic control. IVUS allowed to evaluate anomalous valve movement that was not evident at flebographic control in 5 patients (38%). 4 patients (31%) had an anomalous membrane of azygos vein. Moreover, a double lumen aspect was present in some cases.

Conclusion:
IVUS is a useful device to detect venous anomalies in CCSVI. Particularly it allows a complete evaluation of valve movement that could not be performed with flebographic control. Moreover, it is fundamental to evaluate the Azygos vein structure that could not be showed clearly with US Doppler.

In this small study of 13 patients, IVUS was used to find stenoses that would not have been otherwise found in 38% of them.

You're right, Mark! I did post that. This figure of 38% is considerably higher than my 10% estimate.

Over on CCSVI Locator, Dr. Arata suggested that perhaps this is not a finding of the value of IVUS, but of poor reading of the phlebography!
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Re: Gold Standard Diagnostic Tools

Postby MarkW » Fri Dec 23, 2011 4:02 pm

Hello Cece,
I am skeptical of Dr Arata's view on IVUS as he does not use it routinely on his patients. Simple question - how does he justify his view ? If one of the gold standard clinics said it was not required in 95% of cases I would pay attention. 38% could well be a high estimate due to the small sample. However, why would anyone with sufficient money take the risk of missing some stenoses by not getting a gold standard diagnosis with catheter venography and IVUS ??? I do not understand how all webs are detected without IVUS, do you ?? I am also concerned that insufficient veins are being investigated by most clinics, leading to under diagnosis and insufficient treatment.
Early stages, lots of questions, fewer answers.
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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For civickiller and milesap

Postby MarkW » Wed Jan 04, 2012 9:06 am

Hello Civickiller and Milesap,
I think this thread will answer your points.
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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