This Is MS Multiple Sclerosis Knowledge & Support Community

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It is people like you that makes this forum so special: your post is so sensible and intelligent. Beautiful!

Pierre

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Bob, I think the points you make are valuable. And I definitely said a few times this past week "that is what Bob had been saying."

So I only want to add, and I don't think you are contradicting what I am about to say but just want to get it out there, that for me, for some of us, we have been and will continue to use our minds as we make CCSVI choices. Even knowing that there are risks we know and risks we don't know, we have and will still choose, with full mind, to proceed with some kind of intervention.

I think there needs to be, and will be, years of rigorous testing. And some of us are saying, 'that's great, go ahead, let's just get my blood flowing first for the years it will take to conclusively sort things out. This makes too much sense, and the not doing something feels wrong - - intellectually and emotionally."

I have long suspected that those of us who have gone ahead have very similar personalities and decision making styles so this fits for us, but surely not for everyone.

And one last point, personally and professionally, I truly believe that the decisions we make are a mix of rational and emotional. We're human, that's how we do things.

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Hey Bob,
I also cannot fault your post and it is true that people need to make an informed decision when it comes to CCSVI and not be swept along by the current hysteria.

I just hope that CCSVI is the anwser and that the risks that are unfolding in this early stage can be overcome to provide a routine and safe procedure.

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I for one am choosing to believe in the science of CCSVI until proven otherwise. It just makes too much sense not to, and although there are definite risks, I don't see them as really much higher than current risks associated with other MS treatments (and those are just treatments whereas this could be an eradication of the trigger). My wife was diagnosed three years ago at the age of 30, just three years later she is using a walker to get around. She did a year of Copaxone and had not only severe site reactions that lasted for days and caused a sort of physical deformation she had 2 severe post injection reactions, one that felt like a heart attack and another that crippled her to the point where I had to physically carry her because she was in so much pain (lasted about 15 minutes). She's been on Tysabri for two years now with a couple of short vacations, and has numerous times though about discontinuing it due to the risk of PML.

Everyone has different risk thresholds, and I definitely wouldn't begrudge caution regarding any MS treatments or theories. The way I see it I'm either 1) Jumping the gun in my excitement and faith which will eventually be proven not to be misplaced 2) Jumping the gun with much disappointment ahead if this proves untrue....either way I get to feel really hopeful for at least a short period of time which just makes me feel all warm and fuzzy.

Lyon wrote:In our case my wife is doing very well and we don't feel immediate desperation, but of course eventually we will need definite advancements in MS treatments..and the sooner the better.

That's pretty much how I feel too. At first I was ready to dive in head first, then I realized that I probably (hopefully) have quite a bit of time until I progress futher into the ugliness of MS. I'll hold off and see what else can come from the research.

I do have a question though. After having the procedure, is the hope that your symptoms will stop, or will they also improve?

LoveActually wrote:
I do have a question though. After having the procedure, is the hope that your symptoms will stop, or will they also improve?

That is definitely the hope, but its a big unknown from what I've read. In some cases the brain seems to be healing itself to a certain extent but again I think that going to be different for everyone. Check out this blog, I just came across it today and think its definitely worth a read:

http://myhopefuljourneyintoactualmsreco ... gspot.com/

Johnnymac wrote:I for one am choosing to believe in the science of CCSVI until proven otherwise.

That's pretty much how I feel. So far, it seems to be the most promising thing I have seen. Now, I wouldn't put all my eggs in one basket, but if I had to choose a basket to hold more eggs than the others, ccsvi would be that basket.

Very responsible post when you do consider (I'll get in trouble for this) the "doe-eyed-ness" of some of the people who saw the video. This post you made brings about the summation of your and my disagreements we've had on this subject. What Randi says sums it up. I had already made my mind up, in the vacuum of proof positive, to do this despite known and unknown risks because of who I am and where I was at. I did the same thing when I chose Tovaxin. For me to say I fully understood everything about it would be lying. But I wanted the touted benefit; simple as that. This was the same for me.

That risks are there was immaterial in MY decision making process, but I think it not smarmy of you at all to at least say, "slow down, look around and understand this isn't just like a vasectomy". I was at the point where it was get screwed up from MS, or potentially get screwed up by this. It didn't matter. For me to say I've not received any benefit from this procedure would also be irresponsible as I believe I have. Do I have scientific proof? No I don't, just me feeling better. I'd do it again tomorrow even presented with all the new facts we have, but that is also tempered with the 20/20 hindsight goggles.

A good friend reminded me the other day that with 'real MS', no one can sneak past it, trick it, get ahead of it, etc. Anyone fortunate enough to be in the camp of having it for 20 years and still going to exercise class and not physical therapy I envy the greenest of green. But I simply couldn't supplement, exercise, or diet my way out of progression. That simply wasn't how my MS was going; and it wasn't for lack of trying the aforementioned things. It didn't 'touch' me, it bitch slapped me, so that simply is what it is. So thanks Bob for presenting this as you have. I can't even by like Johnnymac and say I believe until it's disproven. I didn't believe, I just hoped.

Thanks all for this sensible discussion. As a parent of a newly diagnosed 16 year old, having "Zamboni' and his possibilities break at the same time we are looking at medication decisions, is a very welcomed circumstance. However for every question that gets answered about this scan and the associated corrective procedures, 10 more are raised. Can someone explain the difference between the MRI and MRV scans and the doppler ultra sound which I believe Zamboni refers to? I have a basic understanding of the difference in magnetic resonance imaging and ultrasound, but am foggy about why one or the other may be the best and most accurate choice for identifying venous malformations. We are considering a trip to Buffalo to have MRI, MRV scans done for our daughter at the Seton Imaging, but have some concerns about the reliability of the technology, considering it has come on the radar so quickly, as a result of demand. Thanks to anyone who has a comment/suggestion.

If you look under the related information in the publications section of this site you may find the info you're looking for: http://csvi-ms.net/en

I've read most of it but wont pretend to be able to tell you the differences between the techniques as I think its one of the things the scientific community is still working on fine-tuning.

Very sorry to hear of your child being diagnosed at such a young age. Don't discount traditional treatments yet just because of the CCSVI news, as the theory/testing and procedures are further investigated over the next few months anything in the meantime that can help prevent progression in my opinion is a good thing.

Thanks Johnnymac!