Dr. Sclafani: I have assembled below your replies concerning your proposed treatment protocol when you are able to resume CCSVI procedures. It seems that you are planning on performing an initial Doppler screening yourself. Post-op, patients who had to fly-in will stay over a few days to be sure there aren't any problems. A prophylactic dose of a relatively safe short acting anticoagulant for three weeks will be prescribed. No stents will be used.
Follow up visits by neurologists to assess conditions. Doppler ultra sound testing performed according to Dr. Zamboni's criteria.
These last two are real stumbling blocks for me, at least. I live near Chicago and I am not aware of any neurologist here who isn't opposed to the CCSVI theory, so I doubt if follow-up observation is a real possibility. The IR who did my first procedure did have a Doppler ultrasound test done on me by his hospital, but they have since slapped an IRB on him in March and it still hasn't been satisfied.
Does this mean someone cannot be treated by you until they already have a local neurologist and ultrasound testing facility lined up for post-op surveillance? Or does this mean that treated patients should plan on flying back for these follow-ups?
Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.
Yes, it is important that a group of ultrasound facilities be accredited by someone to assure that they do a standardized examination that is reliable. Training is very important, otherwise abnormal findings will be missed. There is not much concern for the ultrasound done prior to treatment of ccsvi. In my practice, I would generally want to perform that baseline examination myself, at least unless there were mitigating circumstances. However as we will likely see insufficient centers in each city for a while, it is important that those treating have access to local neurologists and ultrasound labs to do the surveillance testing necessary to stay on top of follow up. The on line survey of symptoms can only go so far. We need more objective signs indicating possible restenosis, etc.
I have spoken with Dr Z about this and we will develop a standard at the first isnvd meeting in bologna in 2011. In the meantime, I will have to assure adquate long distance followup for my own patients.
Some neurologists have "fired" their patient.
many patients do not routinely visit neurologists and have given up on medications. thus i surely need colleagues who will cooperate. Many i have spoken to have demured and walked away.
Other patients DO NOT want to share their treatment with their neurologist. Some dislike or mistrust their neurologists or are dissatisfied with their neurology care and would be interested in referral to an MS specialist who is open minded regarding ccsvi
So therefore I needed some neurology colleagues close to me that I can refer patients to.
The decreases in oxygen saturation are slight The body is highly effective in extracting oxygen.
However, hypoxia is a factor increasing risk of thrombus formation and with intimal damage could lead to thrombosis. I think that studying outcomes of those who travel is an important point to collect. Good job!
I plan to anticoagulate all my patients with a prophylactic dose of a relatively safe short acting anticoagulant for three weeks. Thus those traveling home will have some protection. I was planning to restrict patients from flying for a few days too.