Another con-CCSVI

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

Another con-CCSVI

Postby Algis » Sat Jul 31, 2010 1:15 am

http://www.lfpress.com/news/london/2010 ... 35416.html

Dunno if already posted; if yes; please forgive and skip.
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Postby Notdoneyet » Sat Jul 31, 2010 5:21 am

Auto-immunity is an unproven theory and why didn't people get the the same placebo effect from CRAB drugs or Tysabri?
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Another con- CCSVI

Postby eyebrow » Mon Aug 02, 2010 3:11 pm

I haven't seen the 'robbery' accusations before, but the name rings a bell. Dr. Spence that is. Didn't he already make an accusation that CCSVI doc.s are 'quacks'? I read that on this site somewhere I think. Please forgive if I'm mistaken
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Postby Chris1967 » Mon Aug 02, 2010 6:54 pm

I dont see a thing wrong with this doctors view point. After all, does he stand to gain from discrediting the CCSVI theory? I would guess not.

Ive had CCSVI treatment in Bulgaria on May 5th of this year. I have gotten much worse in the following months. You couldnt prove this theory by me at this point. That is for sure.

~Chris
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Postby livabird » Tue Aug 03, 2010 12:23 am

Chris you seem to be all over the place just being negative. Sorry you have not had good results but many have. I have noticed that some people with negative results were on DMDs before treatment. These drugs take a long time to get out of system no matter what neuros say. Were you or are you still on any. You were just recently treated also and it can take time depending on how long you have had MS. This treatment even if there are a few blips is still a much better option than the expensive, sometimes even dangerous, not properly tested, fasttracked drugs.

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Postby frodo » Tue Aug 03, 2010 12:45 am

Chris1967 wrote:I dont see a thing wrong with this doctors view point. After all, does he stand to gain from discrediting the CCSVI theory? I would guess not.

Ive had CCSVI treatment in Bulgaria on May 5th of this year. I have gotten much worse in the following months. You couldnt prove this theory by me at this point. That is for sure.

~Chris


If you have really got worse that means that your blood flow affects your MS. In this case your new flow is bad for it, but it modifies the course of the disease.

Maybe they just don't know enough to fix your problem, but your case is another proof that the theory is right.
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Postby Asher » Tue Aug 03, 2010 3:57 am

Chris, Liva and Frodo, I have remained silent for a while following my CCSVI procedure in Poland. I'm one of the cases where the procedure has done nothing much apart for dwindling my saving account. This is not a complaint though; I knew this is an unproven experimental procedure and as nothing else seems to work for me I opted to give it a shot and I accept full responsibility for my choices and action.

But here's the thing; All the advice, suggestions, explanations, interpretations and hypothesis of why someone is getting worse, better or no change at all are well meant but remain exactly that: advice, suggestions, explanations, interpretations and hypothesis that are not scientifically and empirically proven or disproved.

MS is an illusive condition and no one, I repeat, no one knows for sure what's really going on there - neither Prof. Zamboni nor Dr. Friedman.

In this context the hypothesis raised in the article is as valid as any. In the article MS is not referred to as an autoimmune condition but rather as an inflammatory condition. Now this is a FACT. Whether this inflammation is caused by a virus, bacteria, immune system that has gone array, a blood brain barrier pathology or by blood reflux and iron deposition so far remains a conundrum. Non of us has the right, at this point, to silence any voice or opinion that honest and is not motivated by greed.

My OPINION (not fact) is that nearly everyone of the above theories will prove to be part of the explanation of the phenomenon called MS.
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Postby livabird » Tue Aug 03, 2010 4:10 am

That is true Asher. I had procedure in poland had a few good results they are long gone and i have progressed. I feel stuff especiallt azygos was missed so i am now going to bulgaria. I don't believe this is a quick fix i have no miconceptions it won't happen quickly i have had ms over thirty years. I believe perhaps this is the tip of the iceberg but it is on right path. poor bloodflow cannot be good. I will keep trying i am not willing to give up.

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Postby thisisalex » Tue Aug 03, 2010 4:13 am

Asher wrote:.

In this context the hypothesis raised in the article is as valid as any.


Yeah but that guy dont know what he is talkin about:

One of the problems with the theory that multiple sclerosis is connected to blocked veins is that narrowed veins in the brain can cause strokes. But the part of the brain affected by strokes is not the same part affected by MS, Spence said.

In addition, many MS lesions are found in the spinal cord, not in the brain, so the narrowing of veins in the brain is not going to cause those lesions, he said.


it is simply bullshit, he just don't understand what CCSVI is about.
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Postby kiwee » Tue Aug 03, 2010 4:21 am

over the last few days i have really started looking into ccsvi and the different clinics that offer it.
could it be the locations (clinics) that differ and their approach? ie, mixed reviews seem to be coming from people who have had it done in poland and bulgaria, yet i have seen no one stating negative or neuteral results from other clinics.
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Postby livabird » Tue Aug 03, 2010 4:33 am

Sometimes i think Kiwee people may be stirring. There will be a few negatives everywhere but by in large there seems a higher abundance of positives. Poland was good i just belive they missed stuff with me. Every case must be treated individually as we are all vastly different. I guess sometimes for certain cases i tratment is not enough. Some peoples expections are too high i will applaud any small difference in my life this makes. The cost is nothing compared to the cost of drugs people take. A few weeks or months is not enough time to decide it didn't work. I for one am staing positive. This is the best chance we have

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Postby JCB » Tue Aug 03, 2010 9:43 am

I believe that our expectations of the Liberation treatment need to be tempered. We (pwMS) have all seen the you tube success videos and hope that that could be our future. I have a procedure date scheduled for September, I have to keep my expectations in check. If you asked anyone with MS (including me) if we could do nothing but halt the progession would you consider that a win? I would say yes, but of course I want it all back. It is part of our nature that we want it all ie."too much money is never enough". What we have maybe all we get, an educated risk I'm willing to take.

We don't know what we don't know, but I believe that fixing our blood flow can't be a bad thing. I also believe the association between MS and stenosis in Veins is too strong to be ignored. We are still in the early stages of this paradigm. The true paradigm shift will occur as more patients (early adopters) are treated and results are recorded and shared.
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Postby BooBear » Wed Aug 04, 2010 6:22 am

Very well put, JCB. My thoughts are in line with yours- there is a lot to be learned, but I believe we are finally on the right path to getting the answers we seek.

As you so rightly said, restoring proper blood flow cannot be a bad thing.
Three veins angioplastied.  One renewed life.  
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Postby magoo » Wed Aug 04, 2010 6:50 am

We don't know what we don't know, but I believe that fixing our blood flow can't be a bad thing. I also believe the association between MS and stenosis in Veins is too strong to be ignored. We are still in the early stages of this paradigm. The true paradigm shift will occur as more patients (early adopters) are treated and results are recorded and shared.


JCB, absolutely! These are early stages and doctors learning a NEW technique WITHOUT formal training. There are bound to be "bumps" in a road like this. The successes and failures are part of the path to discovery. Everyone going into this now should be aware of the fact that they are taking a chance. Everyone's course of this disease is different and we need to remember that.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby NotFound » Wed Aug 04, 2010 10:50 pm

Asher wrote:. In the article MS is not referred to as an autoimmune condition but rather as an inflammatory condition. Now this is a FACT. Whether this inflammation is caused by a virus, bacteria, immune system that has gone array, a blood brain barrier pathology or by blood reflux and iron deposition so far remains a conundrum.


Image

That is how I see it too. MS is rather a symptom than a disease by itself.
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