Wednesday, October 3, 2012

ECTRIMS Abstracts on CCSVI 2012

 ECTRIMS Abstracts on CCSVI 2012
Reviewed by David Hubbard MD, Hubbard Foundation
Very brief summaries of each abstract are presented below. First we summarize the highlights:

There is an abstract from a doctor in Kuwait reporting that patients were actually worse 1 year after treatment. Here is an email to me from Tariq Sinan MD, the lead author of the work referred to in this abstract.

Oct 1, 2012
Dear David,
Absolutely. you can forward my emails to anybody you want.
Furthermore his poster is not just repudiated. its illegal. he did not get permission neither from all investigators nor from the Kuwait research authorities. All papers and results have to be approved by them. same paper was rejected from ANM after we wrote to them. The author in his poster is not even part of the study team.
Dr. Alrougani met less than 30 % of patients once only. the rest of the patients refused to go to him because they thought he was biased. We used another Neurologist. its now more than 2 years since we started the study. 70% of patients feel they have benefited from the procedure. 1 patient got worse, he got thrombosis in one vein and the neurologist thought he got worse because he stopped Tysabri suddenly.
We hope our 2 yrs follow up prospective study will be out soon.
Best regards,
Tariq Sinan. MD Kuwait

The British Columbia CCSVI Registry reported that most patients who had the treatment said it “met their overall expectations,” and that there were no serious adverse events.
Zivadinov reported that venoplasty improved CSF flow.

A method not previously studied, called transcranial brain photplethysmography, may shed light on what is happening in the brain microcirculation.

Thirteen of the 21 abstracts were ultrasound studies and predictably were negative, inconclusive, and/or repetitive. I think we have all learned that ultrasound is not able to provide diagnostic criteria for the hypothesis of chronic cerebro-spinal venous insufficiency, and internal jugular ultrasound will not help us understand what is happening in the small veins of the CNS white matter where MS lesions occur.

Abstracts in the order listed by ECTRIMS:

Panczel etal. Hungary
20 aneurysm patients and 14 MS patients were tested with Doppler and DSA. Normal flow was found leading the authors to conclude that their DSA findings were "not real," and explained by dilution by flow from the subclavian vein.

Trufyn et al. British Columbia Group
Burton's group found "incidental findings" such as thyroid cysts on MRI of brain and neck in 22 of 156 MS patients.

Yee et al. British Columbia CCSVI Registry
Of 50 MS patients interviewed by phone, 68% said their venoplasty "met their overall expectations. 5 patients reported minor complications including 1 hospitalization for arrythmia.

Diaconu et al. Fox's group at Cleveland Clinic
11 MS patients and 5 normals had additional ultraounds. 5 of 7 subjects with abnormal ultrasounds became normal after hydration.

Wolinsky et al. Houston MS Clinic
3.88% of 206 MS patients and 7.14% of normals met CCSVI ultrasound criteria, that correlated poorly with MRV findings in a sub-group of 83 patients.

Alroughani and Lamdhade. Kuwait (not Sinan’s group)
42 MS patients had venoplasty and were signicantly worse at 1 year by relapse rate, EDSS score and MRI .

El Sankari et al. France
17 MS patients were compared to 12 normals with fast cine PC-MRI and showed no differences.

Denislic et al. Argentina
Cadavers of 15 non-MS patients had normal extracranial veins.

Karmon et al. Zivadinov's group
In 30 MS patients IVUS (intravenous ultrasound) was more sensitive to abnormalities than catheter venography.

Dolic et al. Zivadinov’s Buffalo Group
In 240 normals, heart disease, obesity and smoking increased the risk of Doppler ultrasound abnormalities.

Zivadinov et al. Zivadinov’s Buffalo Group
In 15 patients, venoplasty significantly improved CSF flow using a cine MRI method.

Hoogervorst et el Netherlands
Of 14 MS patients 6 had CCSVI by color-Doppler ultrasound. No correlation was found between these abnormalities and chronic fatigue measured by the Fatigue Severity Scale.

Burton and the Canadian CCSVI Systematic Review Group
A literature search of 14 studies of CCSVI ultasound found a statistically significant association with MS compared to normals.

Banwell et al. Toronto.
Of 26 MS patients under age 18 only 2 met ultrasound CCSVI criteria.

Knox et al. Saskatoon, Canada.

Blinded ultrasonographers found CCSVI in 4 of 5 MS patients, 0 of 10 with CIS, and 2 of 15 normals.

Zivadinov et al.
Echo-color Doppler found CCSVI criteria in 53.9% of patients with "other" neurological diseases, and 29.9% of normals.

Zivadinov et al.
Ultrasound found CCSVI criteria in 43.5% of pediatric MS patients, 40% of patients with "other" neurological diseases, and 30% of normals.

Simka. Poland
In 126 MS patients and 13 normals, ultrasound was compared to catheter venography and correlated poorly.

Visser et al. Netherlands
Echo-color Doppler met CCSVI criteria in 8.9% of 90 MS patients and 0% of 41 normals.

Viola et al. Italy.
Transcranial Brain Photoplethysmography, that measures microcirculation in capillaries and venules, was used over the frontal lobes before and after 10second compression of both int. jugular veins. Cerebral blood volume increase was 80.4% less in MS patients than normals, suggesting lower flow-pressure posssibly due to CCSVI.

Blinkenberg et al. Denmark.
In 24 MS patients, color Doppler, transcranial Doppler and phase-contrast MRI were all essentially normal compared to 15 normals. 


  1. Dr Alroughani's abstract did not include any patients that were assessed by Dr Tariq's group. Dr Alroughani included patients who did the procedure outside any other study protocol as indicated in the poster. Patients performed the procedures outside Kuwait but they were patients of Dr Alroughani and he has been following them for year. Dr Alroughani's team performed a chart review and a retrospective snalysis. I do not see why Dr Sinan is so upset! These patients were not assessed by Dr Sinan's team.

    Two other points should be raised in response to the email posted by Dr Sinan:
    1. I do not it is ethical to accuse colleagues publically and only present one side of the coin. Sit together and discuss any concerns. At least show some respect to the profession
    2. Any research has to get approval from the ethics committee but the results do not need this since it is scientific. Dr Sinan's has a major misunderstanding of this concept. If you read his email, i would have serious concern about his accuracy, behaviour and medical ethics.

  2. An interesting and exhaustive piece of research on this matter can be found here.

    1. We have attended the poster today. Dr Alroughani said that the studied parients underwent the procedure outside Kiwait and in fact Dr Sinan's group were not involved since there were conducting the trial in kowait.

      Dr Alroughani indicated that he and the co-author did a chart review of his patients who did the procedure outside their country. He did not look at the safety of the procedure nor he has data on angio results. He basically presented neuro and MRI data.

      Dr Alroughani deserves an apology from this blog and Dr Sinan because of their false accusation. I think he is being so kind in not pushing for legal actions against those who tried to ruine his reputation.

  3. interesting discussion in this blog.

    It seems that Dr Sinan does not know what he is talking about !!!! Dr Alroughani showed results of patients who underwent the venoplasty outside Kuwait and those patients were not followed by Sinan's group.

    Why are they so doing this to this poor neurologist !!! Think and think. It is money. The interventionist and surgeons are doing it for a fee (up to 8000 USD). If they are so empathic and concerned about the patients, who do not they do the procedure for free or at least by govenmental funds through trials or after the approval of venoplasty through the authorities