- I have reported people who have seen no change on this blog. I wouldn't be surprised if a lot of the people who have seen no change are not reporting, but there is not much I can do about that and, as I mention below, I think it is appropriate for them to take a "wait and see" attitude because no improvements are not necessarily a bad thing at all.
- I have also talked about people having too high expectations, though most of my discussions with such people have been in private messages. I feel good about the small changes I've seen, but if I wanted to feel bad, all I'd have to do is focus on the stories of huge improvements a few people have reported.
- Nothing happening is not necessarily bad news at all. When I had my treatment, I went into it saying that NOTHING happening (no improvement, but no worsening) would be a big win for me. It is unfortunate that some people have unrealistic expectations based on anecdotes from a few lucky MSers, but since all we have are anecdotes and nobody in our health system is doing a survey of results (why not?!?), I'm only guessing that good results are being "over-reported".
Tuesday, August 31, 2010
Negative liberation stories
An anonymous commenter says "Funny that you only speak of the positive stories about ccsvi, how about those who had the procedure and it did not work!" and "When you speak so highly of ccsvi & the fantastic outcomes you make those who did have it done and it did not work feel like CRAP!". Of course, he/she meant speaking highly of CCSVI treatment. I would respond to those statements by saying that:
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Negative liberation stories
ReplyDeleteJust a little comment on this, every time we have spoken with Ted, he never left us with a feeling that this procedure is a miracle. I'm schedule for my procedure tomorrow in Poland and I do ear all kind of stories and never that I put my hope to hight. I'm trying to take one thing at a time. Althought I'm quit positive we don't know what will become of it. This is hope in front of us and I'm taking the chance. Ted thank you very much for all the information on your blog and please continue.
I KNOW SOMEONE WHO HAS HAD THE LIBERATION PROCEDURE AND IS REPORTING NO CHANGE .... AT FIRST I BELIEVED HER BUT QUESTION HER HONESTY. SHE IS ON LTD AND CPP AND IF SHE REPORTS HER PROCEDURE TO THESE AGENCIES SHE WILL LIKELY HAVE TO GO BACK TO WORK AND I THINK THAT IS THE ONLY REASON SHE DENIES ANY IMPROVEMENT. I HAVE SEEN HER A FEW TIMES SINCE THE TX AND I NOTICED IMPROVEMENT BUT SHE DOES NOT WANT IT UNCOVERE. I DO UNDERSTAND WHY, BUT IS NOT REPORTING CCSVI TO INS OR CPP FRAUD? WHEN A PERSON GETS CCSVI MUST THEY CONTINUE ON THE ALL THE HIGH END MEDS OR ARE THESE STOPPED. I HAVE READ ONLINE WHERE MANY WITH UP TO 22YRS OF MS HAVE HAD IMPROVEMENT THE SAME DAY LET ALONE 2 MTHS AFTER .... HAVE NOT READ OF ANY WITH NEGATIVE OUTCOMES
ReplyDeleteThere ARE people who have seen little or no change and they have no reason to be fibbing. If someone is on LTD and CPP, it's likely because she is quite disabled and probably has permanent damage to her nervous system. Nobody is saying that fixing CCSVI fixes permanent damage. I've had some improvements, but there's no way that I could give back my disabled parking tag yet.
ReplyDeleteI accepted the fact that I would not be having the surgery at $15,000 that was not going to happen on disability. It was recently when I heard the procedure being done in Albany, NY for $5000 that the possibility became more obtainable. But I want to know the good and especially the bad to put things in perspective. I have my apprehensions when going under the knife. I know one thing a stent is out of the question. I don't know if it's worth trading in twenty years of MS for a lifetime of being on blood thinners. Just one hell for another that I've learned to live with for something that will need regular blood tests to keep the thinners regulated. One dose/pill does not fit all. And Warfaren is a common rat poison that is a standard thinner used. No I don't think it's an option. But the idea of it possibly erasing a chronic fatigue closer to Narcolepsy and being able to swing my leg over my bike is appealing. Funny thing I have balance on my bike:)
ReplyDeleteEverybody is different. Though I didn't "want" a stent I was quite ready to accept one if it was needed... and in my case, it was pretty obvious that one was needed. I have no problem being on blood thinners, either. They recommend using it one year, but from what I've read, there may be added benefits (nothing to do with the stent) to be on low-dose thinners... kinda like life-time aspirin. Anyway, I'll be discussing it with my GP.
ReplyDeleteI had mine done on 16 jan in egypt. I have had my ms symptoms 4 and half years - bladder urgency and frequency, optic neuritis for 6 months in 2007, and only able to walk 10 min. Think this is because of balance cos when I'm walking with a supermarket trolley I can go way further.
ReplyDeleteAnyway I am one of those who hasn't had any improvement yet. I went knowing that about 1/3 people experience improvement, hoping I would be in this group, but sadly I wasn't. Anyway I've given it a try. I believe that MS isn't 1 condition anyway. I am sure there are many causes.