Posted: Mon Dec 07, 2009 3:41 pm
Speaking as someone who spoke to Dr. Dake very early on, did a CT venogram and found out that I do have stenosis, was told by Dr. Dake that he recommended stenting my upper jugulars, consulted with some world-class doctors (a variety of specialists at the National Institutes of Health, among others) who warned me of the experimental nature and probable dangers of Dr. Dake's procedure, and then decided to not go through with it, I have to say that it seems to me that Dr. Dake's recent actions are entirely prudent.
To start blaming anybody who may have complained about unforeseen complications resulting from the procedure is painting a bull's-eye on the wrong target. Yes, they submitted to an experimental procedure, but apparently were not told of the number and placement of stents that were to be implanted in them during the surgery, nor of the dire possibility of stent migration.
Remember, Dr. Dake was operating in uncharted waters here, as the type and amount of stenting he was doing had never been tried before. I'm sure he was almost as shocked at the stent winding up in his patient's heart as the patient was. It was the patient, though, not Dr. Dake, that had to have his chest split open, his heart stopped, and then sliced open under emergency circumstances to save his life. Put yourself in that patient's position, might you not be a little pissed?
As others have mentioned, at this point everything is conjecture, but I'd have to imagine that Radeek's experience played a large part in the decision to cancel all surgeries, as well it should have. Until more is understood about this type of surgery, I'm sure Dr. Dake did not want to risk the lives of any more patients without having a full understanding of the effects that placing multiple stents in the CNS venous system might have.
I am at least as desperate as anyone here to find some relief, and I'm probably among the most disabled on this board. Without intervention, I fully expect to be bed ridden within 8 to 12 months, maybe sooner. I do know that the NIH is looking into the CCSVI issue, and in my particular case, trying to determine if my stenosis is relevant to my neurodegeneration, and if it is, what kind of procedure would be best to address it. My primary neurologist, a noted research scientist in his own right, is also consulting with some of the top neuro radiologists and interventional radiologists in New York City to try to figure these things out.
The consensus among all of the doctors I've spoken to about this, and I've spoken to quite a few, is that stents in the jugulars are inherently risky, and at this point a largely unknown entity. Zamboni seems to share this opinion. Remember, too, that CCSVI is still just a theory, and has by no means been proven. The evidence seems strong, but still only comes from one source. Until results can be verified by independent studies, nobody can state definitively that the theory is either valid or invalid. Unfortunately, wishing won't make it so. The CTV piece was only a report on a news magazine television show, not an objective exploration of all the issues involving CCSVI. It raised as many, if not more, questions than it answered.
I truly feel for those who were scheduled for surgery and filled with hope, only to now be stopped at the gate, and dealt some enormous frustrations. But please, try to divorce your emotions from this issue, and look at it objectively. Going out to Stanford for stenting is not a trip to the dentist to get a tooth pulled. It involved submitting to a highly experimental surgical procedure that has only been done on about 65 patients, one of whom suffered a disastrous consequence. Dr. Dake and Stanford University would have been derelict in their responsibilities if they had not pulled back and given themselves time to evaluate the situation. A clinical trial, while time-consuming and cumbersome, is probably a necessity at this point.
I only hope that whatever the solution is, it doesn't come too late for me, although at this point it seems like it probably will. I'll keep everybody updated on all the info that comes my way, as I'm trying to push the issue hard on several fronts. My tolerance for risk is high, and getting higher by the day, but I understand that I must make my choices objectively, at least as objectively as is humanly possible.
My best wishes and hopes go out to everybody. MS sucks. And I'm not even sure that what I have is MS...
To start blaming anybody who may have complained about unforeseen complications resulting from the procedure is painting a bull's-eye on the wrong target. Yes, they submitted to an experimental procedure, but apparently were not told of the number and placement of stents that were to be implanted in them during the surgery, nor of the dire possibility of stent migration.
Remember, Dr. Dake was operating in uncharted waters here, as the type and amount of stenting he was doing had never been tried before. I'm sure he was almost as shocked at the stent winding up in his patient's heart as the patient was. It was the patient, though, not Dr. Dake, that had to have his chest split open, his heart stopped, and then sliced open under emergency circumstances to save his life. Put yourself in that patient's position, might you not be a little pissed?
As others have mentioned, at this point everything is conjecture, but I'd have to imagine that Radeek's experience played a large part in the decision to cancel all surgeries, as well it should have. Until more is understood about this type of surgery, I'm sure Dr. Dake did not want to risk the lives of any more patients without having a full understanding of the effects that placing multiple stents in the CNS venous system might have.
I am at least as desperate as anyone here to find some relief, and I'm probably among the most disabled on this board. Without intervention, I fully expect to be bed ridden within 8 to 12 months, maybe sooner. I do know that the NIH is looking into the CCSVI issue, and in my particular case, trying to determine if my stenosis is relevant to my neurodegeneration, and if it is, what kind of procedure would be best to address it. My primary neurologist, a noted research scientist in his own right, is also consulting with some of the top neuro radiologists and interventional radiologists in New York City to try to figure these things out.
The consensus among all of the doctors I've spoken to about this, and I've spoken to quite a few, is that stents in the jugulars are inherently risky, and at this point a largely unknown entity. Zamboni seems to share this opinion. Remember, too, that CCSVI is still just a theory, and has by no means been proven. The evidence seems strong, but still only comes from one source. Until results can be verified by independent studies, nobody can state definitively that the theory is either valid or invalid. Unfortunately, wishing won't make it so. The CTV piece was only a report on a news magazine television show, not an objective exploration of all the issues involving CCSVI. It raised as many, if not more, questions than it answered.
I truly feel for those who were scheduled for surgery and filled with hope, only to now be stopped at the gate, and dealt some enormous frustrations. But please, try to divorce your emotions from this issue, and look at it objectively. Going out to Stanford for stenting is not a trip to the dentist to get a tooth pulled. It involved submitting to a highly experimental surgical procedure that has only been done on about 65 patients, one of whom suffered a disastrous consequence. Dr. Dake and Stanford University would have been derelict in their responsibilities if they had not pulled back and given themselves time to evaluate the situation. A clinical trial, while time-consuming and cumbersome, is probably a necessity at this point.
I only hope that whatever the solution is, it doesn't come too late for me, although at this point it seems like it probably will. I'll keep everybody updated on all the info that comes my way, as I'm trying to push the issue hard on several fronts. My tolerance for risk is high, and getting higher by the day, but I understand that I must make my choices objectively, at least as objectively as is humanly possible.
My best wishes and hopes go out to everybody. MS sucks. And I'm not even sure that what I have is MS...
