I remember on the flight up to Stanford for my MRI/MRV tests, my wife and I joked that I would probably be the ONE ms person with absolutely perfect veins - our expectations were low, but we were hopeful there might be some answers and possible solutions.
There were 2 things that convinced me almost immediately to go forward with my stent surgery later that day. Sitting in Dr. Dake's office we could so clearly see what were very damaged jugulars - the right constricted, and the left, basically a tangled mess! Here I was, staring at something so obviously broken in my anatomy - the veins draining my brian - but unlike those boatload of MS lesions in my head, we could actually DO something about this, as Dr. Dake said 'I can fix that' - wow.. something we don't often get to hear from our neurologists.
Another confidence booster for me was Dr. Dake himself. He was truly excited, compassionate, completely interested in my precise case history, and inquisitive about progress in the best possible way. And, fresh form a visit with Dr. Zamboni in London - he had a lot of conviction and confidence that this might be a key to helping us. All three of us were so surprised to see such a clear example of yet another ms case with irregular veins on our 1st try.
I knew there were risks, but these were realtively very small- the risk/reward ratio felt in my favor: in the possibly of bringing symptom relief or even reversing the course of my ms was too good to pass up. At the very least - something clearly anatomically wrong could be improved.
So from my perspective, since I am able to make this trip happen, and my neuro and PCP think it's really intriguing, there's no harm in finding out what is going on. As one of my friends said to me 'you have to go. this is the kind of thing you will regret not knowing about.' She is right about that for me. But I can totally see why it's not the right choice at this point in time for other people
efficacy can't be judged only by miraculous symptom relief or lack thereof because some symptoms are caused by inflammation and some symptoms are caused by damage to myelin and axons which aren't capable of showing quick improvement
Are these venous stenosis really causing situations in which the blood doesn't meaningfully circulate
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