I wanted to take this opportunity to correct myself in this public forum.
You raise excellent points about the easily misinterpreted phrase "false hope." Hope is never a false
thing, in fact it is what keeps us moving forward everyday.
Unfortunately "hope" has been thrown around a lot during the last election and this may have led to these imprecise statements.
CCSVI is definitely something that needs to be further investigated -- this does NOT mean I am saying that people cannot choose to have procedures done prior to more definitive research. I truly understand a person or a family wanting access to something NOW and not wanting to wait until it has been proven.
As usual, people in this forum made excellent points, such as the comment about a neurologist saying a few years ago that there is "hope" because the oral medications will be coming out. While the medications are still not out yet, so it would have been difficult then
to say that they were going to work, there was preliminary evidence, as well as mechanism that makes sense
As an MS specialist, I couldn't help my patients without thinking outside the box of on label medications (ABCERT and N). I would have no 'hope' to offer my primary progressive MS patients, if I didn't offer them off laebl medications, such as chemotherapies (not FDA approved for MS) and LDN (low dose naltrexone), among other things. Even if venoplasty works for 1% of the MS population, that is still 1% better than right now.
I know all the doctors (the MS specialists) that everyone is talking to and I can tell you that (by and large) they are extremely caring people who went into Neurology and then as a sub-specialization into MS, not because they wanted to prevent their patients from getting the care, they so desperately DESERVE, but because they care about helping others. There is something you have to realize about neurologists, though, neurologists are very conservative. Neurology is the field of bow ties and 19th Century names for physical examination findings. 75% of neurologists are over the age of 45 and it is not that your doctors don't want to help you, but that they do -- it is just that leaps of faith are not suited for everyone.
I read another good point by someone on this forum -- why are the people opposed to the Liberation Procedure so vocal and why not just let it happen? Truthfully, I agree with that person 100%. All I want to do as a physician is protect my patients -- our first and core principle is primum non nocere ("first, do no harm"). Well, there are 2 ways of causing harm, and I think doctors are focusing on the more conservative one:
Harm can be prevented by:
1. Taking less risks.
2. Taking risks that have the potential for great benefit.
Unfortunately, depending on how conservative you are, you may lean more towards "1" than "2." People, especially with aggressive or progressive MS, are much more likely to lean towards "2." This is exactly what I do in an office visit, I try to gauge a person'a risk tolerance. Everybody is different -- some people come in asking for medications that have potentially lethal side effects, while other people refuse to even consider taking any chance of a side effect (even if there is a chance of benefit).
Some of my patients have flown to Italy to see Dr. Zamboni and others would never dream of it. This is also why it is so gratifying to be an MS doctor and to be a part of the vibrant MS community -- because every single person's personality and life view are so unique. My job as a physician, is to help you reach the goals that you have, while not acting irresponsibly.
This is where, I think, the concept of "false hope" arose -- when a new drug is being developed, we never say that it is going to have such dramatic effects that people's expectations far surpass the potential benefits and this is exactly what doctors are concerned about (remember that doctor who spoke about "hope" with oral medications -- she wasn't saying "hope" because it will cure MS, but "hope" because you may be able to escape from the bondage of a needle).
The people who have the most to benefit from treating CCSVI are those with progressive MS (since there are NO effective treatments, although some that I do think help somewhat) but in the paper published by Dr. Zamboni's group, there was no clinical benefit for people with SPMS and PPMS, even though it should have been easy to show a benefit, since it was an open-label (non-controlled, randomized or blinded) study.
This was hugely disappointing, and I remember clearly speaking (and giving the article) to Dr. Dunn. He was frustrated because there had just been those two terrible outcomes at Stanford, and he felt pulled into taking responsibility for patients who weren't his and a procedure he didn't sanction. It wasn't that he doesn't want his patients to have hope; the opposite is true -- he wants hope, but reasonable hope.
I really appreciate the opportunity to share some of my thoughts in this amazing dialogue. I always try to be that bridge between patients and "mainstream" medicine and I hope that, at least, some people find the things we do useful -- such as the video with Clay Walker about CCSVI:
So, I want to apologize fpr the use of the phrase "false hope;" you have to understand that we care deeply about our patients (otherwise, I wouldn't be writing this at 3:10 AM EDT!), and that also means trying to make expectations )and hopes) more reasonable.
Could the Liberation Procedure be amazing?
Would we be ecstatic as physicians and PEOPLE if that were the case?
So, am I hopeful? Yes; but that hope is tempered by the many other things we have seen come and go in regards to the treatment of MS .... hopefully this will be different....
Daniel Kantor, MD BSE
Florida Society of Neurology
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