Barre google de traduction indispensable!
On approche du prix Nobel de médecine pour Paolo Zamboni!!! Article en italien:
Dear Dr Sclafani,
Have you read the German and Swedish studies re Chronic Cerebrospinal Venous Insufficiency commented in the Wall Street Journal?
Did these studies use the doppler ultrasound with the right protocols?
Dr Sclafani's response
11 August, 2010
It is regretful that Drs. Doepp and co-authors' attempt to reproduce Professor Zamboni's discovery of a link between multiple sclerosis and disturbance of the outflow veins of the brain and spine has been unsuccessful.
It is particularly unfortunate that the authors' misunderstanding of Dr. Zamboni's publications about this subject have led to their conclusions that "No cerebrocervical venous congestion in patients with multiple sclerosis" exists
The authors mis-state several of the criteria for a positive ultrasound examination. They state that reflux must be present in both internal jugular veins or both vertebral veins. This is not accurate. Reflux in any one of these veins was considered a positive criteria by Zamboni.
It appears to me that Dr Doepp and colleagues have tried to elicit reflux by testing for incompetent valves in the lower jugular vein. Incompetent valves result in reversal of blood flow from the heart back up into the jugular veins. They used the Valsalva maneurer, a technique to increase pressure in the chest that reverses blood flow. However, Zamboni explicitly states that one should assess flow "never in (by) a forced condition such as the Valsalva manoeuvre."
That the authors' attempts were unsuccessful is not surprising. The ultrasound examination used by Zamboni is a simple one but the description of the technique has not been fully elaborated in his papers. Thus performance of the ultrasound by some investigators is often at variance and this may lead to differences of results. At my own institution, we were surprised that non-invasive testing by ultrasound did not correlate with the very obvious obstructive phenomena seen on catheter venography, which remains the Gold Standard of assessing veins. We also had difficulty identifying CCSVI on ultrasound, initially using the Valsalva maneuver during out testing. In fact we were able to find an obstruction in only one patient of twenty. It was only after being shown how to correctly perform this simple screening test by the Zamboni team during a visit to Ferrara, that we have become facile in detecting these abnormalities. It is clear that there is a learning curve to the use of this technique.
Nor does this paper refute the concept of CCSVI. Doppler ultrasound is only a screening test for CCSVI. When Doppler shows signs of CCSVI, the gold standard test of catheter venography is indicated to detect the sites of potential obstruction.
Doppler is not the definitive test of CCSVI because it cannot assess the azygous vein, an important contributor to cerebrspinal venous outflow resistance. Catheter venographies routinely show evidence of outflow obstructions. Sluggish flow, reversal of flow, extensive collateral veins, strictures, duplications, reversed valves, thickened incompletely opening valves and misplaced valves are among the many abnormalities seen in MS patients that we never see in patients without MS.
The paper by Sundstrom and coauthors similarly rejected the CCSVI hypothesis by performing MR venograms and flow quantification in the neck. MR venography is suboptimal as a screening test because it underestimates and overestimates stenoses quite regularly.
One can see from their illustrations two MRV images. It is noteworthy that neither image shows the portion of the jugular vein where lesions causing flow resistance are usually found: behind the clavicle as the vessel enters the chest. Both images show considerable collateral vasculature suggestive of CCSVI. Moreover the image on the right on page 258 purports to show a stenosis with an arrow. It is well known that most of the narrowings referred to by the white arrow are a common transient, non-stenotic narrowing caused by a true narrowing below the clavicle. Catheter venography shows abnormalities that cannot be detected by MRV.
I was struck by the rapidity of publication of both articles. Surprising! Both papers were accepted within six weeks. I have never had such rapid decision, editing and publication of any of my more than 120 publications.
This debate is going to be a challenging one. One side wants randomized prospective trials to prove efficacy.
However while many proceduralists have noted sometimes impressive gains for patients, these proceduralists need to evaluate nuances of techniques before consensus can be built regarding the best approach to therapy. Only then can intelligent, carefully designed randomized prospective trials begin. Some who commonly perform randomized trials will try to reduce the work of those who will try to develop the best practices because they are not randomized. However, in my view this is a necessary initial step toward the final trials.
I want to share this story with everyone as I feel it is wise and necessary to look at every angle of the equation whether pro or con if they have some validity. I know Michelle so I can vouch for the authenticity of this blog post.
It has been a while since I sat down to thinkabout myself and where I am at. It has been busy at home this summerand although the weather has been rather wild it has been a lovelytime.Our girls have the revoving door on Hotel Zanini just spinning, andwe we have had plenty of fun with friends and family. Of late there has beenpositive attention towards the procedure (Mr. Wall is certainly stepping up!),yet there is plenty of negative press too (such as the test results coming outof Germany and Sweden). What I know for certain is I enjoyed relief from MSsymptoms post procedure and I want it back. There is so much of life ahead ofme!
I have had MS for 20+ years. I remember theday I was told I was "suspect" MS". I knew then that I had it, even though thediagnosis was not clear to the neurologist. I figured "no problem" I come from good, strong genes, I am an athlete, it would take it's time and although someof the symptoms were annoying...I would walk to my grave. I didn't do anyresearch, I did what I felt was best. I tried to walk off numbness, andconducted a normal, healthy everyday life. Hey, I had a hard-working, handsomehubby and two beautiful, young daughters that would keep me fit and upbeat. Howlucky can one girl be?
I admit though, there wasn't and isn't a daysince then that I forget I have MS. Even when the symptoms were mild and notoutwardly visible I was more careful, alerted, attentive and guarded to theaffects it had on my day to day life. I often wished I could shut off my brain,but everyone knows that isn't an easy task. I sure tried, probably too hard attimes. For the first 7 years I was not on any of the disease modifying drugsand was doing very well. For the next 7 years I injected Copaxone everyday(talk about a daily reminder that you are battling MS). Now every move I makeis a constant reminder.
In the early stages, I remember seeing abrochure on a desk at MS clinic, it read "I have MS but it doesn't have me".Honestly even the most positive, healthy, person living with MS knows that is aload of bunk. That particular brochure was lined up with many others aboutliving with a chronic illness, depression and managing fatigue.Seriously!!! How could it not have me, when it has slowly been robbing me myvitality? I am a 50 year old trapped in a 90 year old body. Oddly enough Istill think I am a lucky girl.
There is no doubt that I am suffering from many of the MS symptoms that eased or disappeared after being Liberated. Not all of the symptoms are back to the extent they were before the procedure(which I am grateful for) but for the most part, the party is over. It was a wonderful break and I am looking forward to more of the same in the near future.
Steve and I are being patient (not really) asthe radiologist we are dealing with is on vacation. We hope he returns well rested and full of brilliant ideas in regards to Zamboni's theory and treatment for CCSVI. Waiting is painful and then there will be decisions to make and planning to do. The original decision to go for the vein angioplasty was a "nobrainer for me", but what to do next well it is scary and exciting in the same breathe. After all I am pursuing Freedom Fifty, and I only have 8 more years leftin this decade!
Thanks for still caring about what is happening, will do my best to keep you in the loop.
Hugs to all,
So many questions arise after reading this post. Did she re-stenose is the first logical one. Hopefully her radiologist will look into that. The other question is did they miss something like the azygos? Does she have May Thurners or more blockages hidden deep in the brain? I know naysayers will use this to say that the benefits were placebo effect and this proves it but since thousands of folks haave had the angio and are still symptom, attack and progression free I know there is more to this story than just placebo effect."