lucky125 wrote:He noted that parts of the left vein behaved as if they were still patent from the last procedure, while others needed some more work. He went back to the right and inflated the balloon. He was surprised that although the vein looked wide open, it was not. We were looking at a 2D image. While the width looked normal, either the front or back part of the vein had restenosed. We could tell because as the balloon inflated, the telltale "waist" showed up. The oval shaped balloon looked more like an 8 than a 0. He ballooned the heck out if it. It was interesting to him that the stenosis was not uniform all the way around a particular section. Parts of the vein had held, while others had narrowed again. He learned fascinating information that day that he could not have known before. My veins were teaching school!
eric593 wrote:So glad it turned out well and you were able to dance at your daughter's special day.
How did Dr. H "determine" that you had re-stenosed beforehand? What made him even decide to balloon your vein at a particular place if it appeared normal on the venogram in a 2D image?
Vivavie, I assume you are talking about Albany as you have described their approach well. Those doctors are the MOST experienced in the U.S., that's probably why it doesn't take them long. They are concerned about vein health long term with repeated procedures, and if the person does not experience benefit, it seems reasonable to caution them from returning for more - they do have extensive experience with patient outcomes to base their opinion on.
The proposed u/s schedule seems reasonable to me when we're talking about clotting risks. I think Dr. Sclafani also recommends a follow up u/s schedule.
Do you think you know better than these highly experienced doctors who have a lot more experience and knowledge than you and are more qualified to understand vein characteristics and risks? Or do you just disagree because you feel like you should be able to have repeated procedures, regardless of the doctor's well qualified opinion on the merits of that given risks vs. benefit factors? It is entirely possible that going too many times too early will prevent you from accessing better care later on when the doctors have learned even more because you've damaged your veins too much by repeated procedures over a very short period of time.
Your approach of multiple procedures over a very short time frame hasn't worked well for you. Maybe you would have been far better off waiting after the first procedure and giving it time for your veins to heal and the doctors to gain more knowledge. Every procedure damages the veins, it seems really crazy to have spent so much money and taken the risks of rushing back for multiple procedures over a very short period of time without taking a break and reassessing in a year or more to see if perhaps they (and you) might be in a better position to re-try, given better knowledge and improved vein health.
I think I prefer the Albany approach for safety and likelihood of success than your approach, IMHO. You could well have jeopardized your future treatment when the doctors know even more because of the damage you've put your veins through by repeated procedures over such a short period of time.
Lucky, do you think you were setting your expectations too high to assume that if you had the treatment before the family event, you would be able to dance? Many many people see NO benefit at all - weren't you risking huge emotional consequences by expecting such high results from a treatment that in no way guarantees ANY result let alone such a dramatic one? I fear the aftermath if people are expecting so much from a treatment with absolutely NO objective evidence of neurological benefit at all. The only evidence we have is an open label study and anecdotal testimonials which NO doctor will tell you is reliable. I don't even think the Zamboni study data talks of improvements in existing neuro damage. Don't you think your expectations of the procedure were inconsistent with a realistic understanding of the data available? I'm glad it worked out, but it seems your expectations of the outcome were very unrealistic and you potentially set yourself up for great disappointment by your grandiose attitude. Were you concerned about that?
Cece wrote:When you say there was a slight hint of narrowing, it wouldn't have been enough to go in on if not for the symptoms pointing toward restenosis?
Was it a full Ferrara transcranial doppler ultrasound, with the 5 criteria?
I hope we don't hear more reports of the doppler not corresponding with whether restenosis is happening or not. I agree about the documention of symptoms except for people who do not have improvements or anything noticeable enough to document, which if we go by Dr. Siskin's numbers is a full third of us.
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