As many of you know, I answer questions on the MSF forums (Ask the Doctor and African Americans with MS), and I wanted to share a recent question and answer.
Question:
I am 45 year old American woman with rr ms. i am pretty stable, have drop foot, fatigue. I read that the CCSVI could block the illness and improve symptoms. Of course I am curious. My family urges me to wait until there is more solid evidence of success. How long should I wait? If I can find a doctor here in Italy (I live in Italy) who is willing to do the angioplasty I think I would do it tomorrow. It seems to be helping the many who have done the procedeure. Isn't this evidence enough? What are the major cons?
Answer:
Thank you for the question.
CCSVI (chronic cerebrospinal venous insufficiency) is the name of the proposed condition, not the procedure -- which has been termed the Liberation Procedure, and is venoplasty with or without stenting.
A few previous blogs of mine on this, can be found at:
So, what does this all mean?
The testimonials and videos of people with MS undergoing venoplasty are impressive, but so is the response of people in clinical trials, of medications which may ultimately found to not be effective overall.
On the other hand, people with MS don't want to wait until the procedure is either proven or disproven; this is why we are designing research where everyone still gets the procedure, but at least we collect useful information that will help the entire MS community in the future ... so stay tuned for the research.
In regards to "evidence enough," sadly the answer is no. Scientific evidence is a process that has rules and processes. Suggestive - possibly, hopeful - definitely, but evidence has a very specific meaning.
Thank you,
Daniel Kantor, MD BSE
Medical Director
Neurologique
President-Elect
Florida Society of Neurology
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People continuously take a huge leap of faith with DMDs, yet angioplasty has been around WAY longer. Would I suggest people run out and get their veins stented, no, but if this gives people relief for a year, two years, etc. then why not? Why would it be any different from a person with cardio disease? That is the argument.
ReplyDeleteThe human body is a different animal altogether. Many functions of the body we, as doctors, cannot even explain how they work. We do not even know how the currents therapy available for MS works and tell our patients that 'it is believed that the therapy works this way'. This may be another one of those examples.
ReplyDeleteAlso, the liberation has a much higher safety outcome than that of Tysabri. How many people have died from Tysabri?
Sad to say, but the solution may be to take the neurologist out of the equation due to the venous nature of MS.