NO improvements after procedure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Interrupted » Mon Jun 28, 2010 9:00 am

frodo wrote:She doesn't hav a winning card. If you feel worse that means that blood flow can reallly modify the course of MS. Your case is an additional proof that everything is true. Unfortunately we still do not know enough.


Well to be truly unbiased it doesn't really say that because you cannot rule out the chance the relapse would have happened anyway, or that something unknown happened to a nerve during the procedure. Or even that the stress of the procedure caused it. There could be many reasons.

I don't say that to be a wet blanket because I hope as much as everyone else that CCSVI is the root, I just think it's worrying sometimes when people want something to be true so much that everything get's written in to be pro the belief.
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Postby Jaguar » Mon Jun 28, 2010 8:34 pm

Hi Mila
I too have worsened since i saw you in Katowice. I don't believe that the procedure has anything at all to do with it. I was already declining and that hasn't changed. I'll be back at the end of October - who knows what they'll see. It's not like I can get checked here in Montreal...

In the meantime, I am hopeful that in another month I start to improve.

Paul
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Postby joanp » Mon Jun 28, 2010 8:57 pm

ikulo wrote:Has Dr. Zamboni or other pioneers of CCSVI research ever addressed the potential for getting worse after a procedure?


if one reads the news release on ny times, it says "Another doctor, Marian Simka, who has been performing the procedure in Pszczyna, Poland, has reported that it has made symptoms worse in some patients.. "

so yes, i want to know the good and the bad. i know the majority r good, but i want to know the bad too.
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Postby mila77 » Tue Jun 29, 2010 2:04 am

Jaguar wrote:Hi Mila
I too have worsened since i saw you in Katowice. I don't believe that the procedure has anything at all to do with it. I was already declining and that hasn't changed. I'll be back at the end of October - who knows what they'll see. It's not like I can get checked here in Montreal...

In the meantime, I am hopeful that in another month I start to improve.

Paul


Hi Paul,

It is nice to hear from you, I was wondering how are you after the procedure and I am sorry to learn that your symptoms also worsened :-( I really hope this situation will reverse and we will feel some improvements with time.

In the meantime I am wondering about enlisting for a checkup appointment at Ameds clinic (it is just 40 km from Warsaw), just to have the 2nd opinion. I know that they are less experienced at the moment but maybe it is not a bad idea to ask for reassurance somewhere else?
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Postby Jaguar » Tue Jun 29, 2010 5:25 am

Mila, that would be a lot easier for you than for me! I would go to Ameds for the checkup... why not? Unless it is prohibitively expensive, which I would doubt.

I'm off to my neurologist today - he has no time for CCSVI. He'll be suggesting that I start with cyclophosphamide, something I don't want to start.
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Postby mila77 » Tue Jun 29, 2010 11:31 am

Jaguar wrote:Unless it is prohibitively expensive, which I would doubt.


Well Ameds is definitely more expensive for Polish because unlike Euromedic, Ameds has the same prices both for Polish and foreigners.

But well, luckily it turned out that the cost is not an issue for me, because my american health insurance company covered the cost of the last procedure 100%. I had to pay for it first but then my claim was accepted so I got the money back. But I have to admit that after reading this forum and getting to know what is the attitude of Canada and USA when it comes to CCSVI, I was affraid that american insurance company will dismiss my claim and say that it is an experimental procedure or smething like that.

And speaking of the neuros, I had an appointment with mine today and I had to tell her about my liberation treatment. I was scared to death as she is the person responsible for clinical trials with MS drugs, but I was very positively suprised. Of course she was not enthusiastic about CCSVI bec there were no clinical trials yet but she showed real interest and wanted to see all the documentation, CDs from procedure and so on. I was her 4th patient who had undergone this procedure and she said many more reported her that they enlisted and are waiting for their turn. However, she also mentioned that the 3 other post-procedure patients did not report any improvements from it but they were in a worse condition than me before procedure.

Mila
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Postby pklittle » Wed Jun 30, 2010 1:19 pm

joanp wrote:
ikulo wrote:Has Dr. Zamboni or other pioneers of CCSVI research ever addressed the potential for getting worse after a procedure?


if one reads the news release on ny times, it says "Another doctor, Marian Simka, who has been performing the procedure in Pszczyna, Poland, has reported that it has made symptoms worse in some patients.. "

so yes, i want to know the good and the bad. i know the majority r good, but i want to know the bad too.



Do we really know the majority are good? Where are the official stats?
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Postby Jaguar » Wed Jun 30, 2010 2:29 pm

As far as I know - we have absolutely no idea. Some of us who are "liberated" come to TiMS, many of us don't.

You hear bits and pieces of info, but no clear picture exists. That's why there does need to be studies - we really have no idea what's going on. We think (and feel) that this procedure is the right thing to do. But I have to say - my impression at this point is not much different than if I was just asking a lot of people with MS who have NOT had the procedure - "how are you doing?" Some would say better, some would say worse, some would say the same.

I'm glad I went to Poland and I would do it again tomorrow (in fact going back in October). I still believe that anyone who thinks this might help should get it done as soon as possible.

But I do think we need to be critical of the process - let's face it - it's not very inspiring. We (collectively, including neurologists and bureaucrats) can and should do better than this. We need to work with the present MS Societies and help them find a better way than this antagonistic and "harmful to everybody" situation that we have right now.
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Postby BooBear » Thu Jul 01, 2010 5:31 am

But I do think we need to be critical of the process - let's face it - it's not very inspiring. We (collectively, including neurologists and bureaucrats) can and should do better than this. We need to work with the present MS Societies and help them find a better way than this antagonistic and "harmful to everybody" situation that we have right now.


Jaguar, I could not agree more. However, the collaboration required is not yet occurring due to a number of issues- from plain disbelief to monetary conflicts of interest, in my opinion.

Like others, I was disheartened by the studies the NMSS chose to fund on CCSVI. To me, it's simple- take a group of MSers, treat half and track results. Don't treat the other half. Compare in two years. Done.

We don't yet have enough time behind us to know how many benefits, if any, will still be there in 2-5 years. But the current studies don't allow us to see that, either. It smacks of stalling, to be honest.

Like you, I want to see the good and the bad. I am getting liberated in six weeks from today- I am excited, but I also have no expectations. I would be thrilled if the treatment simply stops the progression- drugs have been unable to do that for me- anything beyond that is simply a bonus.
Three veins angioplastied.  One renewed life.  
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Postby rssugg » Thu Jul 01, 2010 6:16 am

the best thing we can do, in my opinion, is sway the NMSS to change their focus from the neuro community to those folks who can help us. The neuro community is pretty much useless at this point. Groups like the NMSS need to engage people that can help.
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