Wednesday, March 24, 2010

Gotta keep posting...

This evening I was reminded by a friend that there are some people following (and presumably getting some value from) my blog and it made me realize that my work has been getting in the way of keeping my scribblings up-to-date.  There have been quite a few encouraging developments on the CCSVI front that may be news to those not following the relevant discussion threads on or the CCSVI sites on Facebook. I'll try to summarize some of the nuggets of information and impressions I have gained from following those main sources of information (and speculation) - note that I am writing most of this from memory, so may be "mis-remembering" some details:
  1. There have been, apparently, over 200 "liberations" conducted in Katowice, Poland by Dr. Simka's team and they have now ramped up their operations to the point where they are treating 50 people per week.  It's not clear if that includes a second clinic that Euromedic was supposed to be opening soon, but it certainly means that the operation has become more efficient - mostly in a good way, apparently.
  2. The patients reporting on their trips to Katowice under the new protocol (more expensive, but all the details in Poland are handled by Euromedic) have indicated that they were treated very well and the ones that mentioned it said that the extra attention given to them was worth the extra money.
  3. Of all the people who have been "liberated" in Poland (and there are now many who have reported), I have heard of two "non-positive" reports from the perspective of symptoms:

    • Rici, a Polish MSer, had very good results after treatment of his left jugular last fall, but after a time things started to get worse than before he was treated.  A new assessment showed that his right jugular was huge and had "pancaked".  The jugular is too big for a stent, and it is not clear what can be done about it.
    • Another Polish MSer had only reported very minimal improvements (if any at all) up till a couple of weeks after being treated.
  4. Otherwise, pretty well everyone else has reported improvements that range from those that could be called minor (feet warm again, slightly less fatigue) to huge (fatigue drastically reduced, mobility increased, spasticity decreased, sleeping better, bowel and urinary problems reduced).  Stories on TiMS by contributors (you can look through the CCSVI tracking thread or search for the postings of individuals in their own threads) like "Edser", "ErikaSlovakia", "fraser", "Donnchadh", "Richardk", "Dovechick", "Brynn", "alby", "openmind" "sophie", "LR1234" and quite a few others talk about improvements after treatment in Poland, while others who were patients of Dr. Zamboni's report continuing good results and patients of Dr. Dake (of Stanford) are coming to their first anniversary and are almost all reporting continuing improvements.
There are other good things to report like new places where the assessments and treatments are being undertaken (Georgetown University, Frankfurt, Warsaw, Sofia, Mumbai, New Delhi, some place in Jordan), more interest from the media and more signs that the CCSVI theory is winning (grudging) acceptance in the medical community... but I better go work out since I missed last night and I want to be in as good shape as I can possibly be when (if) I am liberated and my mobility starts to improve again.

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