This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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 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

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 So that is a scenario where an on-table doppler could be of benefit, if the catheter is withdrawn from the vein.

Thanks Cece and bump....................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

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

_________________
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

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). 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

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

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). 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

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 .......

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




MrSuccess

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.

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). 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

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). 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

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!

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