drsclafani wrote:When most IRs started treating these veins in 2010, they were unsure of how large a balloon to use. It was becoming clear quite that the balloon size we expected to use was smaller than we actually needed. We were basing our balloon sizing on veins that were stenosed by scarring which requires smaller balloons. Recommendations from those who started treatments earlier than the majority of us, suggested things like 18-20 mm balloons in woman and 20-24mm in men, use of cutting wires were also advised. These were very damaging. Moreover anticoagulation utilization was unclear. Some used no or very short term anticoagulation (remember patients were traveling long distances to reach their interventionalist.). It wasn't clear to me until january-february of 2011, by the use of IVUS, that the stenoses were caused by immobile valves not stenosed veins. and that larger balloons could be used
In response to injuries and occlusions, many treating doctors played it safe, using smaller balloons that would not injure the vessels. Not surprisingly this incomplete treatment resulted in very short term improvements caused by opening the valve obstructions only for a short time before restenosis occurred. When restenosis was treated by smallish balloons again, it is not surprising that improvements would be limited.
I would say that i have treated more patients who had been treated previously by others than patients who had never been treated. If you recall, i was stopped from doing procedures after about 25 patients back in April 2010. By the time i returned to treatment full time, nine months had elapsed and many patients had been treated with, as you can imagine, short term benefits or problems with occlusions. In the beginning I also had a fair number of thromboses. However rather than move to smaller balloons as was so tempting, i persisted and worked out my algorithm using cross sectional area of the vein to select my balloon size. so i continue to use fairly large balloons, averaging at 14.5 mm with range from 8mm to 24 mm. My occlusion rate is fairly low at this time and early detection has allowed salvage of about half of those.
I have therefore treated many patients who were underdilated before and in some improvements have been better than the first time. treatment remains a "crapshoot" with unpredictable results. But many of my best improvements have come in patients who had improvement from prior treatments that required another treatment.
^ These are very interesting observations and in part answer my question of a week or so ago which was "Where are you now with CCSVI".
The description above for "average patient" first treatment mirrors Emma's treatment in Dec 2010 in Edinburgh.
Even back then Donald Reid was concentrating on valvular malformations rather than "stenosis" per se. He explained the treatment was in it's infancy and balloon size and treatment would err on the side of caution. It's the main reason we chose Scotland and we agree completely with how the process was handled at the time.
Emma improvements were transient but took some months to regress rather than days, weeks or hours.
Questions:- (I do realise it may be difficult to give a general one size fits all answer to these as every patient will display subtle difference - so please answer in majority):-
1. What would be the ideal (best case scenario) treatment for a malformed/malfunctioning valve? Rupturing with a balloon or removal completely with a cutting device that may not even have yet been perfected/designed?
2. How important in the anatomy are these valves? Would removal cause other potential issues?
3. How does hypoplasia of an entire jugular effective prospective treatment? One of Emma's veins measure circa 12mm the other 6mm (and diagnosed hypoplastic.)
4. Where do valves fit in with the azygos and renal veins.
Sorry if some of this has been covered already. I don't expect answers to the following, these are my thoughts being transferred to type, do feel free to comment if appropriate though.
In my mind - Emma's improvements from the first procedure (albeit transient) confirm a relationship with the procedure and some symptoms currently attributed to MS, particularly eyesight improvements and circulation of blood to the extremities.
This leaves us now in a position where we're weighing up the possibility that procedure one in Edinburgh was not fully effective for the reasons described above so clearly.
So do we start saving for a second procedure at some point in the future? Is there significant risk that a second procedure may in fact do more damage than no procedure at all.
I've always wanted to visit New York!