MS_mama wrote:Dr. Sclafani, I was speaking with a cardiologist who was unfamiliar with CCSVI but when I was explaining the general gist she did tell me that one thing to keep in mind is that when we do angioplasty, we are, in a sense, "offending" the vein and then there is a tendency to re-stenose and for the vein to become hyperreactive. So, she said, she would theorize that post-angioplasty, a vein may become more severely stenosed than before.
Also, in her opinion, she said that she is unfamiliar with the research but just hearing a little bit about her she would question intervening in a situation where the benefits are unclear. In other words, her view of "do no harm" would mean--do not intervene if there is an unclear benefit, especially in light of the fact that veins do not "like" angioplasty and there are some potential risks, esp of irritating the vein and causing it to become worse off than pre-angio. What are your thoughts on this?
Lastly, she brought up the issue of going to a university provider vs. someone in private practice, because sometimes the profit motive can cloud a person's judgment as to whether to intervene, whereas university dr's are salaried and so therefore more judicious as to whether to intervene or not (because there is no profit incentive). I'd appreciate any thoughts on this.
Thanks so much for your time and we're all hoping your IRB goes through as soon as possible!
nn98200 wrote:Dear Dr Sclafani,
I had balloon angioplasty in Poland in the middle of March after which I had a great improvement for about two weeks. Afterward most of my improvement went away and I became even worse than before the procedure. Last Thursday I had venography locally (Albany) that found out one more narrowing of about 50-60% at the top of my left jugular vein in addition to the two narrowings the docs found in Poland (one of the bottom of the left and one of the right jugular). Is it possible that the third narrowing appeared as a result of the angioplasty in Poland? I doubt it that they'd miss something like that in Poland and I am afraid it is a result of the angioplasty. But my much bigger concern is that after the 2nd angioplasty here I only had one day, which was the day right after the procedure, that I felt a big improvement of symptoms. Since then I have been feeling just like before the procedure. Of course, I started to think I have restenosis again and I need stenting. But today I talked to the doctor and he expressed the opinion that stenting may be too risky in my case because my veins seem to restenose very fast and the stent(s) may not be able to hold them. He said that if the stent collapses they have no options at all how to help me. I know that there are many people who had stents in Poland and in Stanford (with even bigger stenosis than mine which is about 50% at the three narrowings and Dr Dake didn't do just ballooning at first to check if and how quickly these veins would restenose and decide if a stent is a good option). I forgot to mention that the doctor said he had a patient whose stent collapsed.
By the way, this morning (Wed.) I was stunned by the lightness and the looseness of my legs that I had right after getting up! I walked 100 meters on my own (with little stops) even before taking a shower to loosen my body (a few months ago I could do that but only after taking a shower and far not as well as now)! I felt like I felt a day after the procedure in Poland! Even better than the improvement I had last Friday - the day right after the procedure here! I really thought I had restenosed as I was not doing well since Friday last week! But the issue with stenting remains. I am also worried about the third narrowing the doctor found after the angio here - can a new narrowing pop up after an angio?
I'd really appreciate it if you can share your thoughts on the matter! Thank you very much!!!
HappyPoet wrote:Dr. S.,
Your knowledge of MS is most impressive. Why, you know more than all of my past MS specialists, my GP (and his PA), and my radiologist.
I hope you won't mind me saying that your CCSVI research within our state's university system, SUNY (my alma mater), makes me especially proud.
Hoping everyone has a happy day,
cheerleader wrote:If I could just clear up a misconception--in my husband's case, his left jugular vein was closed 95% very high, and for quite some length. Dr. Dake ballooned it for many, many minutes and it collapsed immediately. The decision to stent this vein was not made lightly. He has since had 2 other angios, to clean up the lining and to check for lower stenosis. He has none. He had high jugular stenosis, extending above into the dural sinus (which has been left alone, and is still not normal) This presentation does exist...perhaps not for all patients, but there is always ballooning first in these cases. Dr. Dake is using the internal ultrasound on rechecks if there are any questions. I know this is a learning process, and we all look forward to all the IRB approvals, so these wonderful doctors can work together and share their info...
Cece wrote:CureorBust, they do inflate at lower pressures when using a cutting balloon compared to a regular one, so: good question!! Maybe? The advantage of the cutting balloon comes later, when it appears to have less restenosis.
"Lower balloon inflation pressures (4-8 atmospheres) are recommended with the cutting balloon. The cutting balloon also dilates the target vessel with less force to decrease the risk of a neoproliferative response and in-stent restenosis."
Lower pressure and less force during dilation = more likely to close immediately?
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