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Friday, November 5, 2010 8:30 PM
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Linda Rousay
- Comment by Linda Rousay 2 seconds ago
- This is part of a response I wrote to Wayne's post about follow up care and I want to take it a step further:
- Follow up is a real concern for anyone having the procedure.It is NOT readily available.
- Delete CommentThis was beginning to remind me of the Patients Like Me Website in house fighting, so I waited a while before I responded. I agree that we need to worry about follow up care. I can say that because I know I have that care, though except for having a second procedure,which was totally my own mistake for not listening to my IR in the first place,I haven't needed it. I am not Canadian. If I were, I might be more fearful of not being treated for clotting afterward, or any other circumstances that warrant follow up.It has happened here in the US and all the people I am aware of were treated, not left to die. I have accompanied six of your fellow countrymen and women to my team of doctors to have their procedures. Two of them were ones who had restenosed and needed a second procedure. The last one was a mom with a brand new baby. During her pregnancy she was berated for having the procedure in the first place. She had minimal improvements but decided to get pregnant before it was too late to have a child at all. The pregnancy was a nightmare. She had to have someone "help" her nurse her brand new baby. Her second procedure was wonderful. I have blogged about it before. The one difference in her procedure that I am not seeing anywhere else, is a guarantee that she will have the means to come back to have any follow up that is needed. This is what is lacking with the procedure everywhere. Why? Because it can. Follow up is important, but so is having the procedure.There are many ways that we are dealing with these issues that are not posted on the web. It would be nice to know that funds have been set aside for people like Meghan, but each time I have tried to bring something good to light, I have enough resistance to back off. We need comprehensive care. We are blind if we don't think that things are going pretty much as the MS Societies, neuros and government have counted on. It will be many years to have a system in place to address all of these issues as long as PwMS are in house fighting. I intend to address this with a video because a book is just not going to cut it this time. We have to work together. Neuros used to be the Savior's d'jour. Now we have transferred that same blind faith to IR's and VS. They have done miracles for us, but they are still the suppliers of our demands. We are not demanding enough. As long as we are mired down in political debate and petty posturing, we will continue to receive our treatments with no constant standard. that would tend to validate the need for clinical studies. Who wrote the rules for the studies? Why are some early doctors applauding the procedure now backing down in their rhetoric? What amazes me is that we don't see it. That anyone cannot share Dr. location and information after this much time has passed is a testament to how successful Big Pharma has been overall in impeding our progress. Are they now intimidated like their neurological counterparts? We are constrained to tolerate the clinical studies, though the guidelines are unfair and poorly orchestrated.
- The price of the procedure itself is overinflated ,updated equipment not withstanding.Doctors afraid of being aggressive enough to cause real improvement openly admit it and the bill is paid while the patient looks for another doctor. Dr. Zamboni deserves all the credit in the world for what he has done, but those who have taken the baton to run with it, are going their own way. Because of IRB approval in the states and medical leaders in Canada who could care less, they will get away with it. One of the positive things about clinical studies was so that this would not happen. Having said that, if we all sat back and waited for that to happen,our generation would be consumed before it ever came to light. I wonder how many people realize that there were key people who were well aware of the venous insufficiency with MS. Their attempts to keep it from the masses was fairly simple until the internet gave us a forum to act upon information which had been with held. We aren't hearing a great deal about this are we? As I said before, what is happening behind closed doors is far more interesting and informative that much of what we have available to us on FaceBook. I spit my coke all over myself when I read that Dr. Hubbard announced that a non metal stent has been designed and will be available soon. That would have been a most gratifying revelation had it not been 8 months too late. I have five of them in my neck and chest. The first was placed in June. I'm sure it has occurred to somebody that Albany is not the only Mecca for CCSVI. You won't hear about disagreements among the doctors whose names are best known. There are other doctors who want no part of any of these groups because none of them offer comprehensive care. The procedure has been developed far beyond what it was a year ago. With all due respect to Dr. Scalani, Siskin, and others, they aren't the only kids on the block. they have patients who are very disillusioned by their treatments and the brakes that are being applied to please the powers that be. We aren't naive enough to believe that only drug companies, neuros and MS societies are concerned about their bottom line are we? Years ago many people died from improperly performed bariatric surgery. There was no comprehensive care. Patients were not followed up, they lost weight too quickly, labs weren't checked regularly. Some people starved to death. Now bariatric surgery includes a great deal of pre-care psychological testing and lifestyle planning. Wound care and healing issues have been dealt with. Still, many overweight people were dying from complications secondary to morbid obesity. They chose the surgery over the terrible lives they were living. Most are alive and well today and some paid with their lives.
- CCSVI is not the same as morbid obesity, but any new innovative treatment takes time to fine tune. We are the beginning. There will be many instances of regrouping and planning as we learn more about this condition. In that respect, we are speeding along. Keep in mind that the place we stand today is at least a decade behind what it should have been. The real enemy here are those who are doing their level best to impede the progress that will not be stopped as much as humanly possible. As much effort as people are expending in this effort, it is far short of what is needed. Our little successes and are nothing compared to what needs to occur. The fund raising is like filling a pool with an eyedropper at this point. I personally won't donate to any one "face" on the internet. We do not have the public behind us and are not likely to as long as we acquiesce to the detractors who are far better schooled than we are in public relations. We don't even have the support of many PwMS because everything has not been pre-done and tied in a neat little package for them. I get very frustrated with the posturing, fighting, climbing over people's backs to get ahead. I realize that I won't make a dent in the promotion of the liberation procedure. I was naive to think that if people saw me and the others who have had successful procedures it would be enough to make real progress. The truth is that being right doesn't mean that "right" actions will follow. Now that I have that off my chest, I'll work on improving my current attitude.The hoops we have to jump through are so absurd that it would be comical if not so tragic.
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