CCSVI skeptics

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby RuSmolikova » Wed Sep 23, 2009 2:34 am

Thursday, September 10, 2009, 15:30 - 17:00
Endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis. A longitudinal pilot studyP. Zamboni, R. Galeotti, B. Weinstock-Guttman, G. Cutter, E. Menegatti, A. Malagoni, D. Hojnacki, J. Cox, C. Kennedy, I. Bartolomei, F. Salvi, R. Zivadinov (Ferrara, IT; Buffalo, Birmingham, US; Bologna, IT)

Objective: To evaluate safety of minimally invasive endovascular treatment (EVT) for chronic cerebrospinal venous insufficiency (CCSVI) associated to multiple sclerosis (MS) using MRI, clinical and haemodynamic outcome measures.
Background: CCSVI is a vascular picture characterized by multiple strictures at the level of the main extracranial cerebrospinal venous outflow routes including the internal jugular and the azygous venous systems. It is strongly associated to MS (JNNP 2009 Apr;80(4):392-9).
Design/Methods: We designed an open-label, MRI-blinded, two-center, randomized, EVT intervention parallel-group, 12 month study (EVTMS) following an initial cross-sectional (CVIMS) study. Sixteen relapsing-remitting (RR) MS patients, 8 from Bologna, Italy and 8 from Buffalo, NY were enrolled in CVIMS. All 16 patients who completed the CVIMS study and presented severe hemodynamic venous anomalies accepted participation in the EVT intervention prospective study (EVTMS). Half of the cohort (early intervention group, 4 from Buffalo and 4 from Italy) were randomly selected to have the EVT procedure (in Italy) at 3 months and half (delayed control intervention group, late group) at 6 months. The EVT procedure consists of selective venography complemented by balloon dilatation when significant stenosies are detected. All patients will be prospectively evaluated at 3, 6, 9 and 12 months with sonography, MRI, and clinical examinations, or in case of MS relapse only with sonography and clinical examinations.
Outcome measures: Safety, and preliminary efficacy will be monitored using MRI (T2 and Gd lesions measures), Doppler haemodynamic parameters of CCSVI and clinical measures (relapse rate, EDSS, MS functional composite). In addition, a variety of vascular and other MRI measures (including susceptibility-weighted imaging and CSF flow) assessments will be performed and compared to the 1-year outcome in all cohort as well as in between the 2 groups (early and delayed EVT intervention).
Preliminary Results: Mean age at baseline was 36.1±7.3 yrs, mean disease duration 7.5 ±1.9 yrs and median EDSS 2.5. Mean number of gadolinium (Gd) active lesions at baseline was 0.38±1.5 and mean number of T2 lesions 27.1±10.5. Median of Doppler parameters of CCSVI was 4 (2-5). Mean follow up at the time of abstract presentation will be 11 months.
Conclusion/Relevance: This study should provide valuable data on safety, tolerability and preliminary efficacy of EVT for CCSVI associated to MS.

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Friday, September 11, 2009, 15:30 - 17:30
Chronic cerebrospinal venous insufficiency is related to inverted and decreased cerebrospinal fluid flow and greater brain atrophy in patients with multiple sclerosis
P. Zamboni, E. Menegatti, B. Weinstock-Guttman, J. Cox, C. Schirda, A. Malagoni, D. Hojnacki, C. Kennedy, E. Carl, M. Dwyer, N. Bergsland, R. Galeotti, S. Hussein, I. Bartolomei, F. Salvi, R. Zivadinov (Ferrara, IT; Buffalo, US; Bologna, IT)

Objective: To investigate the cerebral Doppler venous outflow haemodynamics (VH) in multiple sclerosis (MS) patients vs healthy controls (HC) and to correlate VH parameters with MRI measures of disease severity.
Background: Chronic cerebrospinal venous insufficiency (CCSVI) is a vascular picture characterized by stenosies affecting the main extracranial venous outflow pathways. This picture is strongly and constantly associated to MS
and determines significant alterations of five specific VH criteria (JNNP doi:10.1136/jnnp.2008.157164). CCSVI diagnosis needs to fulfill at least 2 out of 5 VH criteria. VH in CCSVI is characterized by blocked outflow and a high rate of cerebral venous reflux, but the relationship with MRI disease outcome has never been investigated.
Methods: Sixteen (16) consecutive relapsing-remitting MS patients (mean age 36.1±7.3 yrs, mean disease duration 7.5 ±1.9 yrs and median EDSS 2.5) and 8 age- and sex-matched HC were scanned on a GE 3T scanner. CSF flow and velocity measures, as well as lesion volume (LV), atrophy and perfusion MRI outcomes were assessed. VH was obtained in MS and HC by means of the detection of the 5 above mentioned criteria.
Results: All MS patients and none of the HC presented severe CCSVI. Particularly, HC presented 1/40 pathologic VH criteria, whereas MS patients 61/80 (median 0 vs 4, p< 0.0001). MS patients showed a higher antegrade and retrograde peak velocities and higher antegrade and retrograde CSF flow than HC. The net CSF flow was inverted and significantly lower in MS patients than in HC (p=0.038). Both in correlation and regression analyses the number of VH criteria was highly related to decreased mean net CSF flow (r=0.8, p<0.0001, R2=0.6, p<0.0001, respectively). In addition the number of pathologic VH criteria was related significantly to greater whole brain atrophy(r= -0.5, p=0.05), and there was a trend for increased gray matter atrophy (r=0.46, p=0.079). Finally, the relationship with LV and perfusion measures did not reach statistical significance.
Conclusion: Inverted direction and decreased CSF flow in MS suggest the activation of patho-physiological mechanisms in CCSVI in response to impaired venous drainage of brain tissue. In addition, the relationship between brain atrophy and VH measures on one side, and the strong correlation between VH and net CSF flow on the other, clearly suggest a pivotal role of CCSVI in MS pathogenesis.
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Postby BBE » Wed Sep 23, 2009 3:32 am

Thanks, I finally found it. I was just surprised(disapointed) that it wasn`t mentioned in the National MS Society Summary. They probably didn`t consider it that breathtaking...
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Postby ErikaSlovakia » Wed Sep 23, 2009 4:07 am

Hi RuSmolikova and welcome here!
Yes, exactly these 2 papers.
This site is amazing. I am in Czechoslovakia again! :)
Say hi to Prague from me!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby RuSmolikova » Wed Sep 23, 2009 4:28 am

Hi, Erika.
Thanks for inviting me here.
Prague is looking forward for your experience.
My only question: do you have any findings about connection between corticosteroids therapy and CCSVI? What is your personal experience with corticosteroids therapy? How long have you been on it?
This question comes from general knowledge that corticosteroids have a negative impact on veins... :evil:
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Postby ErikaSlovakia » Wed Sep 23, 2009 8:39 am

Hi!
Well, I was taking pills of Prednisone in 2004 for about 2 weeks. I had really terrible problems with side effects so I did not even finish it. Since that time I do not take pills I really prefer to dye. It was so bad.
I was in hospital in 2005 for 5 days. I had IV of Solu-medrol. First day 500 mg and then 4 days 1,000 mg each day. I did not have problems with side effects. Only my skin was painful for couple os days. On the other hand I do not know if it helped, because it took another 3 or 4 months to get better. 2007 twice, 2008 twice, it always takes couple of months to get better but I never get as well as before the relapse. I just have really STRONG headache while been on steroids.
Last November I started with LDN. No relapse so far.
But I am not able to say for sure if Steroids are good or bad.
Yes, I also read the 2 papers. I did not ask the neurologist here.
So far I only talk to radiologists and angiologists.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby zap » Wed Nov 25, 2009 10:14 am

"MS expert downplays Italian surgeon’s treatment"

Research head at The Ottawa Hospital questions validity of clogged veins theory during education session

http://www.ottawacitizen.com/health/exp ... story.html
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Postby ikulo » Wed Nov 25, 2009 10:20 am

zap wrote:"MS expert downplays Italian surgeon’s treatment"

Research head at The Ottawa Hospital questions validity of clogged veins theory during education session

http://www.ottawacitizen.com/health/exp ... story.html


The last few paragraphs that quote a man whose wife has MS are on point. Specifically, he says

“The problem I have is that you take Dr. Zamboni’s work very lightly, and, quite frankly, you haven’t done any better,” Mike Sastre said during the question-and-answer session. His wife, Linda Hume-Sastre, has lived with MS for almost seven years.

“All I want to say is give the man a chance, give the people here a chance who haven’t been helped very much by what you’re promoting,” Sastre said. “If they get better using something very simple, you lose a lot of research money, and so does the MS Society.”


8)
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Postby ozarkcanoer » Wed Nov 25, 2009 10:45 am

Well, about the skeptics, there will always be skeptics. I myself in some hidden place in my mind am a skeptic. But what I am excited about is that there is scientific research going on NOW. At Buffalo... Zivadninov et al. And Dr Zamboni himself said that he looked for quote "EVIDENCE, EVIDENCE, EVIDENCE". And we have patients of Dr Dake that are walking evidence. And we have the evidence from peer reviewed journals from Zamboni. And Dr Haacke said he wants his MS-MRI protocol to be adopted so there can BE MORE EVIDENCE. What more can be done ?? Now that the news is out and the attention of the MS world has been captured then we can get funding for more studies and get more EVIDENCE.

You can tell I have watched the CTV M5 video several times, LOL.
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