More tidbits from our discussion during my appt:
Dr. Cumming has grown more conservative than he was initially. He does not go over 5 atm for pressures. (Compare this to my procedure in Brooklyn two months ago, where a still relatively mild 8 atm was used, and the tactics of last fall, where pressures over 20 were in common use.)
When patients restenose, they want more aggressive treatment the second time. This may be the exactly wrong thing to do.
He cares for his patients. He is not used to seeing the same patients every six months, and the same problem has cropped up again. There are people with double occlusions (both jugulars lost). Even if you can get an occlusion open, it is not easy to keep it open.
Personally I pay attention to how long a doctor's longest procedure is, as a sign of just how far he'll go for a patient. Dr. Cumming mentioned a five-hour procedure, with some real challenges. Five hours is a long time and a lot of effort.
He uses IVUS on every patient. He would not treat CCSVI without IVUS. One interesting thing is that, since using IVUS, he has been treating less often in the azygous. What looks like a stenosis on flouroscopy turns out not to be a stenosis on IVUS. This prevents unnecessary treatment, which can lead to complications. (It's interesting that IVUS helps identify what is a stenosis in the jugulars and what is not a stenosis in the azygous.)
He is examining the dural sinuses on every patient, unless the patient requests that he does not. If the dural sinuses are really messed up, such as from a prenatal thrombosis, then the outflow might be very abnormal starting within the cranium, and it is uncertain whether treating any obstruction down at the level of the jugular valves will be of any benefit, since the extreme abnormalities within the dural sinuses cannot be treated. (Whether or not to check the dural sinuses is a matter of some debate. I was glad to have it done during my second procedure, because it laid to rest any concerns, but if it increases the risk of subdural hematoma, then maybe not.)
My own concern that we may see some narrowing in my right jugular, since it is now 7 months out from treatment, would seem to be a valid concern. My other concern is that my left jugular would close up again, since it had the gall to do so once already. Right now they both look good on doppler ultrasound. If I experience a loss of improvements, then he would recommend another procedure regardless of what's seen on ultrasound, since it is an imperfect imaging tool. I didn't get a chance to ask him what he thought about increased risks from multiple procedures. Or maybe if the warnings (from Dr. Siskin and Dr. Arata) about repeat procedures being less effective could be because of damage done to the veins in one of the first procedures that causes the need for multiple procedures.
He also only treats in the lower jugular. He does not treat the up-high jugular stenoses. These are real stenoses but in his experience, they do not respond well to treating. They may be due to external compressions. You can balloon and they can go immediately right back to the way they were. Other interventions like stents can lead to occlusions and the patient can end up worse than they started.