Tuesday, April 13, 2010

WELL THIS REALLY SUCKS!!

It only took days to bring my mood from one of jubilation to complete frustration caused by the forces that are committed to thwart any progress for the treatment of CCSVI. It was April 2nd I believe when I received a call from Holly who is the coordinator for the CCSVI program at Kings County Hospital informing me that my scheduled date to begin testing on June 7th was no longer a confirmed date. She wasn’t able elaborate on any details other than to say the program has been delayed so appointments will have to be adjusted. She told me that Dr. Sclafani would be sending an email to explain the situation but in the meantime, don’t book a flight. This really took the wind out of my sails, I was so close and now I’m left in a state of complete uncertainty. It took a week for Dr. Salvatore Sclafani, he goes by Sal which is how I’ll refer to him, to send out the email explaining things.
The exact circumstances that I was always worried might derail the procedure had indeed come to light. Just as in Dr. Dake’s case at Stanford, the hospital has stepped in to halt all Liberation procedures! The positive part is that no one has used the term cancelled, just postponed. Apparently this all started with an article written in the Wall Street Journal outlining the serious adverse effects that have occurred at Stanford. The result of this article gave the hospital and its owner the idea that they were vulnerable if another adverse event occurred so they felt it necessary to postpone all Liberations until a formal research proposal has been approved. Out of nowhere another treatment alternative has been stopped based on bogus information! First of all why does a financial paper like the WSJ have an interest in reporting on a medical procedure and CCSVI? Based on the conclusions of one reporter who is relying on and propagating misinformation, the procedure has been demonized. I’m floored that the truth regarding the Liberation procedure is not being explained in the media or by MS organizations. The adverse effects being referred to are the slipping of a stent into the heart of one patient that required heart surgery to correct and the unfortunate death of a woman that was not a result of the procedure but the blood thinner medication taken post treatment that caused a brain hemorrhage if I’m not mistaken. Yes these events are very unfortunate but in no way should they lead to the negative stigma now being cast over the procedure. I haven’t read the following week’s column but apparently this same reporter wrote an article singing the praises of an MS drug, this coming from a financial paper…hmmm, I wonder if the big pharm companies have any influence???
The use of stents in the Liberation treatment is very uncommon and as far as I know the only cause of complications resulting from Liberation however the media isn’t interested in reporting on this. Balloon angioplasty is the current treatment standard throughout the world until there is more research on the use of stents. I’m unsure of how many angioplasty procedures have been performed for CCSVI but I have not heard of any adverse effects and we are for sure into the hundreds and perhaps over a thousand surgeries! The simple fact is that the angioplasty procedure is very safe and all the fear mongering about the high risk and safety of the process is completely BUNK! Fortunately there are doctors like Sal who are committed to the cause and genuinely interested in helping patients. He must submit a proposal for a research project and have it approved by the Investigational Review Board of the State University of New York and by the HHC's (the parent company) review board. Dr. Sal is hoping to have an expedited review but realistically this will take 2 or 3 months but he still hopes to be operational in June. I don’t think it’s possible to be as disappointed as I am or anyone else that was on his list for treatment but I know that he genuinely shares our feelings of frustration and distress. In fact he is so committed to CCSVI that he has delegated many of his responsibilities as Chairman of Radiology so that he can focus more of his time on ramping up to perform more Liberation treatments than he had originally planned by the end of the year. He has personally committed to everyone that was on his treatment list that we will be treated as soon as he can resume and commented that we are at the front of the line. I’m not sure how long this line is or if the program will change after being designated as a research project so I’ll just have to wait for more news. Sal really is an awesome doctor, he follows people’s comments on web chat rooms like TIMS (This Is MS) and actually answers questions, posts comments and updates. I can’t hide my disappointment but I am still very encouraged and positive about getting Liberated, I just hope its in time to prevent further damage that I know has taken place in the last few months.

W-5 did another CCSVI report on Saturday, if your interested you can view it on their website w5.ctv.ca, it was another very good story and unbiased in the reporting. Again the views of Dr. Freedman as an expert in MS were expressed and again he made himself sound like a “jack ass”. I think his closed minded approach to MS and overinflated ego has reduced his credibility to zilch! Some of his statements are so hypocritical and make no sense when viewed from a compassionate and pragmatic medical viewpoint. My jaw dropped when he said “why would you fix something that may not have anything to do with the disease?” Where’s the logic in that, if a venous abnormality is discovered and you know that blood is not draining, why wouldn’t you want to fix this?! I’ve had huge differences with Freedman in the past but his recent comments reinforce his treatment biases and arrogance and I know for a fact that many patients have dropped him as their neurologist, as would I in a heartbeat!

We are now seeing positive results from the angioplasty procedure from around the world, so much so that the “anecdotal evidence” is overwhelming. I can’t accept Freedman’s comments that patient improvements could be attributed to the placebo effect as rational thinking. There’s not enough coincidence in the world to explain the positive results flooding in daily from across the globe. The fervour created around CCSVI has been amazing and woken up the world yet some stubborn, ignorant and unyielding members of the medical and scientific community remain asleep clinging to the traditional and unproven theories and treatments for multiple sclerosis. Testing and treating CCSVI is not the answer to MS but definitely an important part of the puzzle. Until we can put the rest of the pieces together we need to capitalize on what we have discovered and provide any hope and relief possible to those of us suffering with the debilitating effects of MS everyday. I can tell you that things are worsening for me if not everyday then by the week and I may not recover from the additional damage being done. Time is of the essence and all players with a vested interest be that patients, doctors, researchers, insurance companies and governments need to accept this fact and act with urgency and compassion. The government of Kuwait has set the example by committing to testing and treating all 6000 citizens with MS! The government of Alberta should stand up and take notice, the societal cost of this disease is enormous and anything we can do to stop it or at least slow it down would be a very wise investment!
LC

1 comment:

Loobie said...

Leroy,
Hang in there man. Dr. Sal says it will probably only be a 3 month delay as he is preparing his IRB review to get his research trial going. That piece of asswipe that wrote that article was apparently going to right a neutral/positive articly about CCSVI. Well he got scooped by the gal that wrote the AP article and he had sour grapes is what I've been told.

I've seen correspondence from Dr. Sal about what happened and he is calling it only "a bump in the road". I know that doesn't help someone waiting; I've been there and I know. Hang in there man, I think he may be your best chance. I just sent you a link to a webpage I found yesterday that has a couple of docs in Canada that are now doing it also, but they're probably swamped also since one of them was on the W5 segment (McDonald). Hang in there dude, this can't be easy, but if anyone can deal with this, it's you.