This Is MS Multiple Sclerosis Community: Knowledge & Support

Thats an affirmative Mark. I'll be posting a recent patient experience soon with pics.

Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Thanks Mark aka CureIous. I am pleased that Dr Mike Arata now uses IVUS as well venography. Looking forward to the details. Sounds like good news for IVUS and CCSVI in California.
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

Pleased to add Dr Mike Arata at Synergy Health, Newport Beach California.
MarkW

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My findings on 24-September-2012 are that these 8 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
USA....................Newport Beach, CA.......Dr Mike Arata.......................Synergy Health
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.
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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

Our friends from Buffalo confirm that BOTH Catheter Venography and IntraVenous UltraSound are required to diagnose CCSVI. Using just one will miss some issues.
MarkW

Chronic cerebro-spinal venous insufficiency (CCVI)
Thursday, October 11, 2012, 15:30 - 17:00
Comparison of intravascular ultrasound to gold standard catheter venography for detection of extra-cranial venous abnormalities indicative of CCSVI: results of the PREMiSe (Prospective Randomized Endovascular therapy in Multiple Sclerosis) study
Y. Karmon, R. Zivadinov, B. Weinstock-Guttman, K. Dolic, C. Kennedy, K. Marr, V. Valnarov, A. Siddiqui (Buffalo, US)
Background: A combination of 5 Doppler Sonography (DS) criteria was proposed for diagnosis of chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis (MS). A subject was considered CCSVI positive if >=2 venous hemodynamic (VH) criteria were fulfilled. A number of recent studies evaluated accuracy of the DS criteria against the “gold standard” catheter venography (CV) with discrepant findings. Despite being used as a gold standard for assessing vascular problems, CV only provides luminography, with little or no data on the vessel's wall or intraluminal structures that are the main characteristics of CCSVI-related venous abnormalities.
Objective: To investigate frequency of extra-cranial abnormalities in the azygos (AZY) and internal jugular veins (IJVs) using CV and intravascular ultrasound (IVUS).
Methods: PREMiSe is an endovascular angioplasty study that enrolled 30 patients with relapsing MS who fulfilled >=2 VH extra-cranial DS criteria at screening. The study was conducted in two phases. Phase I was open label and included 10 MS patients, whereas phase II is placebo-controlled, blinded and randomized, and included 20 MS patients. CV was performed on all AZY and IJVs, while IVUS was performed across suspected stenotic segments (>=50% restriction) of the AZY and IJV's in phase I, and on all vessels in phase II. CV was considered abnormal when >=50% restriction of the lumen was detected. IVUS was considered abnormal when >=50% restriction of the lumen, or intraluminal defects (septa, multiple channeled vein, intraluminal hyperechoic filling defect, double/parallel lumen) or reduced pulsatility were detected.
Results: Out of 22 AZY veins studied with IVUS and CV, 19 (86.4%) showed abnormal finding on IVUS, whereas 12 (44.4%) of those showed abnormal CV. In the left IJV, 21 (84%) out of 25 veins studied with IVUS and CV showed abnormality on IVUS, and 19 (76%) on CV. In the right IJV, 14 (58.3%) out of 24 veins studied with IVUS and CV were abnormal. The most frequent venous abnormalities were the intraluminal ones (86.4%) in the AZY vein, whereas in descending frequency order, reduced pulsatility, stenoses and intraluminal abnormalities were detected in the IJVs.
Conclusions: IVUS assessment of AZY and IJVs showed a higher rate of venous abnormalities compared to CV. IVUS provides a diagnostic advantage over "gold standard" CV in detecting extra-cranial venous abnormalities indicative of CCSVI.

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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

Dr. Simka included the following in his recent case study publication:

http://www.hindawi.com/crim/surgery/2012/293568/

Conventional venography did not discover the external compression by muscle of a jugular. He posits that IVUS may have been able to do so.

There may be overlap between bad veins in the same patient. It might be nice to see overall prevalence of patients that show any abnormality using both tools vs. those who show none. These folks seem light years ahead of the Italian MSS, who are still trying to prove Doppler does not diagnose, which everyone knew already. If you want conclusions you need fluoroscope and IVUS both. Doppler is so frequently wrong, especially in the wrong hands, that the CCSVI Alliance and the IRs as a group should issue a joint statement deprecating it.

Someone should study the frequency of studies with results tainted by conflicting interests showing results negative to CCSVI theory versus frequency of untainted studies that do not. It's time the doctors taking drug industry graft stopped being paid the big bucks by the MSS, the research institutions, the government and the insurance companies to do faked-up phony research. This is not science it is commercial marketing.

Even though they publish results that are favorable to the theory that CCSVI causes symptoms of MS, the Buffalo folk are not doing anyone favours by allowing the drug industry to give them money.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Please remind the researchers that CV (catheter venography) ALONE is NOT GOLD STANDARD TOOL.

I agree with 1eye's comment in the thread:
Re: Dr. Zamboni's 2004 research
by 1eye » 22 Feb 2013, 01:43
So isn't the way to reproduce the finding to use the gold standard, venography and IVUS, rather than wasting time trying to use an obviously inferior tool?

Earlier in this thread there is Italian research which shows that CV and IVUS in combination and used by a skilled practionioner is required to find all stenoses. So any CCSVI research or diagnosis which does use both CV and IVUS is a waste of money.

Not a popular statement with many CCSVI researchers or practitioners.

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

The question is not really about finding the stenosis, as much as what to do with said stenosis once they are found, if Dr's are treating stenosis one day by angio or whatever, only to have restenosis occur on a regular, and unaffordable basis, then what's the point? We know so little about restenosis rates from certain clinics (unnamed), but it does happen much more frequently than you know.

Not only that, but the narrowings MOVE. So now what? Monthly angioplasties?

We tried obliterating the valves. Meh, the stenosis come back. We chase the variable little buggers around like petulant children. We angioplasty over and over until the veins can take no more, I speak of those that have fallen between the cracks, the hopeless, scarred an untreatable.

Yet scanning techniques are the only issue when it comes to evaluating clinics?

I think not. Talk with the woman I talked with, personally, this past weekend. They paid their money, did the procedure, got their couple of months of WOW.

Right back to square one, I saw the UT scans, before, and after, on a regular basis.

I will tell you to keep in mind stenosis is variable. A bad spot today is great tomorrow, I've seen the numbers. Shilling patients at 10-15k a pop for a variable condition, is not sustainable. You eventually run out of green recruits.

Keep this in mind all you Drs, we are guinea pigs, but with limits. Bad news travels just as fast as the glory stories. I detest any Dr., regardless of his title, experience, or accolades, using us MS/neuro patients to fulfill his/her own need for whatever career goals.

Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

The randomized controlled trials will give us some sense of what the restenosis rates are. If insurance were covering the procedure, it might not matter if the veins restenosed once a year and got retreated. Out of pocket, it matters.

Really sorry to hear that your friend has lost her improvements. And yet yours and mine are going strong. Why us and not her? What was done differently?

my beautiful, brave and (still) battling wife had CCSVI in Edinburgh around 2 years ago with Donald Reid, a wonderfully kind and caring man - and although there were some minor mainly QOL improvements, perhaps not as many as hoped for!
we estimate that today she is probably on or close to 9 on the EDSS and with no NHS or any other available treatment for those with PPMS and without the luxury of time on our side, we once again find ourselves "exploring alternatives"
top of our current thinking - and hence this message - we are giving serious consideration, probably our last throw of the dice, to a combined Autologous Stem Cell & (repeated / optional) CCSVI treatment package and wonder if anyone has started or thought about starting a Gold Standard Clinics assessment for this? We are only too aware of the cowboy fraternity out there looking for desperados like us!

Cureious, I would disagree with you about roaming stenoses. Transient stenoses are not true stenoses they are most commonly muscular compressions that do not really respond well to angioplasty and may not need treatment at all. "restenosis" at different points in the vein can truly happen if angioplasty is done at an incorrect location with too large a balloon, thus forming a new stenosis.

almost all the restenoses I have seen have been exactly at the site of the original stenosis, that is most commonly at the valve. These restenoses are most likely caaused by
1. inadequate angioplasty
2. annulus injury due to too large a balloon
3. thrombus forming around the angioplastied valve leading to adhesions
4. a dominant collateral that diverts blood away from the normal pathway
5. Thrombosis
6. recoiling valve leaflets, and i cannot figure out what causes this or how to predict it.

I cannot comment about others, but i work with wonderful doctors who are trying to understand ccsvi, causes, treatments, diagnosis.

Medical care costs are expensive and without government and insurance support, all modern medicine would be unsustainable.

In the US patients with kidney failure require repeated angioplasty to keep their arteriovenous fistulas open for dialysis. Without the government's decision to include dialysis care for all, many people would have died for lack of insurance to support this expensive treatment.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

I am so sorry about you and your dear wife. What an awful situation. and how grand you are as a husband! you touch me dearly and i admire you so much.

To get to an EDSS of 9, neuronal damage is quite severe. At the current time, expectations for dramatic improvements should be tempered in such situations. It is unlikely that angioplasty of jugular veins is going to reverse neuronal death. Angioplasty in such situations may improve function of severely damaged but not dead neurons by improving cerebral perfusion and possibly improving cerebrospinal fluid drainage. This is beneficial and valuable to some, for example ability to clear secretions, cough, move a hand a bit. but it is unlikely to reverse this terrible situation.

I wish i could help you.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com