girlgeek33 wrote:I had to respond. Couldn't help myself. Though, I thought I was tactful and clear headed... Here it is:
"You make some very inflammatory statements, without having all of the facts.
First, the only people to make the claim that this is a cure, are the critics. Dr. Zamboni and all other doctors involved do not claim this to be the cure of MS. They have however been making note of how this procedure is showing to improve MS symptoms. I myself have had the procedure, and I love the quality of life improvements I have had because of it! Nothing they have offered us to date have done anything even close to what this procedure has done!
As for fraud, and unproven treatment, you couldn’t be further from the truth. The procedure is a well proven, well practiced procedure, for over 30 years. It is allowed and considered “off label” use of the original purpose of angioplasty. Which is also done for other medical conditions. But make no mistake, the procedure itself is proven and allowed. As for fraud. There are several existing insurance ICD codes that cover this procedure. Stenosis of veins and congenital abnormalities of the cerebral vascular system to name a couple. The second code has existed and some doctors out there must habpve been doing something about these veins if there is an already existing insurance code.
What needs to be studied and addressed is the implications on the course of MS in patients that have had this procedure. As well, what is the best protocol for testing, treatment, stents, balloons, etc., specifically relating to CCSVI.
When you cloud the specifics with retoric without the facts, you become one of the critics that keep the true information out of the discussion.
These doctors are not preying on those of us with MS. Ive never met a group of more caring, patient focused doctors in my life. I’ve personally met many of the big names involved in this. These are amazing men! They hardly take advantage. They understand the procedure is an easily tolerated procedure that they perform quite often on other patients, for example, dialysis patients have this same procedure done all the time, on the same veins! These doctors are pioneers, not afraid to stand up to fear mongering critics that like to scream as loud as they can that this is dangerous and irresponsible. It is not dangerous! It is not irresponsible! Personally, I couldn’t believe how absolutely easy it was to make such a huge difference in my life!!!!! EASY!!!
Am I cured, no! Do I still have MS, yes! Do I still have significant symptoms, yes! But, am I feeling better, YES!!! I was able to tolerate the hot summer NJ days with no impact on the MonSter! I can sleep without sleeping pills! I can wake up feeling like I don’t need to go back to sleep! I can do a little more and I can enjoy more out of life. Prior to being liberated, I spent way too much time in bed, watching TV. I went kayaking with my son, 2 days in a row! I went to an all day concert yesterday. 3 days in a row of activity and I’m not feeling like I want to sleep for a week!!!
Tell these doctors to stop?! Are you kidding??? Absolutely not! Keep going and get more of your colleagues involved!!! The procedure is proven and they should continue to treat us while they do the studies to understand the implications to the course of MS!!!!
If you are going to come out so strongly about something and tell fellow MSers that they are committing fraud, perhaps you should make sure you have your facts correct!"
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