This Is MS Multiple Sclerosis Community: Knowledge & Support

Glad to hear it Cece ... I'm sure it brings peace of mind.

i am going to predict that the one month scan offers no benefit but added costs in the asymptomatic patient after valvuloplasty or venoplasty.

It will be of benefit in earlier detection of thrombosis in symptomatic patients, in those with antiphospholipid syndrome and other hypercoagulable syndromes, in those who have been stented and those who have previously had thrombosis.

Lanie.... thank you for your input. It is reassuring to here from someone so knowledgeable.

Dr. Sclafani... your point about not requiring a Zamboni protocol ultrasound to test for thrombosis (clots) is a very important point that I don't think many people understand. That is why I started this thread. The Zamboni protocol did not seem like the best approach for finding thrombosis.

This information can be a HUGE benefit to Canadians and others who have to travel great distances to find trained ultrasound technicians. I would think that this information should be explained to every patient since we now expect almost every patient to lose their gains at some point after their procedure.

Bruce

Very much agree.

Glass half empty there?
I don't think it's as dire as that. If we go with Dr. Zamboni's original findings, 50% of patients retain their opened veins.

Congratulations, Cece. I was thinking about you yesterday. It was worth having the test early for the peace of mind.

Cece, you are a master at seeing the glass as half full and I thank you for that. We all benefit from your positive attitude here on TIMS.

Dr. Zamboni's original findings were indeed 50% but I just can't believe that any more. I have no actual data but from here on TIMS it seems that there are a few people who's improvements have lasted several months but most (??) seems to have setbacks, with many having second, third and fourth procedures.

With all the publications that have been released lately, are there any that address the outcomes after several months?

Bruce.

THANK YOU BRUCE.
I agree with 100%. And when I had my first done in June 2010, my great improvements were short lived (1 week) followed by getting worse and worse. At that time, "they" said having the procedure had no negative effects. Now, many are reporting they have restenosed and are worse than ever.
I think those that have had it done once, improved, kept their improvements longer than 6 months are among the lucky few.

I don't think there were any. Dr. Simka's had a large number of patients (around 500) but I think it only looked at immediately post-procedure. To my knowledge, Dr. Zamboni's is the only one to look at long term results post-procedure, at 18 months initially. He has talked about 3-year results at conferences. Actually Dr. Dake also presented on 1-year results of his Dake patients, which showed continuing improvement on fatigue among RR patients at one year. It's hard to say, though, because I know Dr. Dake did follow-up procedures particularly at the 2 month appointments for whoever needed them.

I feel for anyone paying for this procedure out of pocket, I think it is true that the odds are uncertain. Glass half full is not glass fully full, unfortunately. The risk of clotted jugulars and thrombosis is a serious concern. I have questioned the claim by Dr. Arata's group that they are seeing 99% to 100% lasting results with no restenosis, that seems very improvable, maybe they are the glass-fully-flow-and-overflowing folks.

Hi Cece, dr Arata is using the agressive techniques dr Sinan started. Dr Sinan has similar results. He told me that they have monitored patients for over a year and they saw fewer leasios for all of them. 4 partial thrombosis out of 400 patients. All of them was treated right away. He experienced no scarring. I am wondering how reliable all of this data. I talked to an IR who went to Poland to dr. Simka and he said that their administration of patients was very poor.