Search found 92 matches

by griff
Mon Apr 11, 2011 1:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Anybody with no stents and no restenosis after one year?
Replies: 25
Views: 3969

Re: Anybody with no stents and no restenosis after one year?

I think we have moved beyond all those rosy reports of instant improvements why keep pounding the obvious, we know lots of people improve with angioplasty, the first time in particular. I should think a newbie especially one that has to pay out of pocket is interested in hearing how likely he/she w...
by griff
Mon Apr 11, 2011 8:29 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Improvement reports
Replies: 332
Views: 71120

www.discovermoosejaw.com/index.php?option=com_content&task=view&id=16792&Itemid=399 Although Frankowski's trip to India was costly, at over $20,000 in expenses, he has had a significant increase in energy since returning. No one doubts these stories, but I think our point is that we experienced and...
by griff
Mon Apr 11, 2011 6:10 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Improvement reports
Replies: 332
Views: 71120

I am with Brainteaser. We all know it works. But the key thing is to have improvements that last. We are now seeing people going for their second, third etc angioplasty. I fully agree with dania. I think what it counts what we got at the end of the day. If I have a few weeks of improvement and then...
by griff
Mon Apr 11, 2011 6:03 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: One year later, MS patients track their progress
Replies: 2
Views: 1609

Re: One year later, MS patients track their progress

http://www.msrc.co.uk/images/gallery/img_ccsvi_3.jpg A year later, five Canadian multiple sclerosis patients have reported their progress to CTV News, and there are positive signs for some from a new MS treatment. Last year, Lianne Webb was flattened by fatigue -- the result of a decade of living w...
by griff
Sun Apr 10, 2011 5:46 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Think Twice if you have mild MS
Replies: 105
Views: 15926

It was a risk but she had too much to lose to wait. Everyone has to educate themselves, make an informed decision and live with their choice. Again I feel for those that do not have good outcomes but to discourage others , hmmm, that's not so good either. I am very happy if we see more and more suc...
by griff
Fri Apr 01, 2011 11:40 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: clotted off jugulars
Replies: 82
Views: 14461

I think is is pretty clear that the 1-2% rate with Dr. Sinan is a myth. I think we have come a long way since I read the first article in Globe and Mail that an Italian doctor found a simple and safe cure for MS. Now, what I see is more and more problems. I am also wondering how that 1-2% restenose...
by griff
Fri Apr 01, 2011 5:06 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1866671

We have never treated by angioplasty a disease like this. pure valvular obstructions i am not sure we need to continue to think that restenosis is an essential component of this. We just have to figure out how to do this properly. It would be tremendous if you are right about that! It's been said t...
by griff
Fri Apr 01, 2011 4:57 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1866671

we had a great informal session saturday night, speaking about things like anticoagulation, balloon size and my percussion hammer :lol: i got a sense that the giant balloons were out of favor. While no one mentioned the thrombosis issue, i think that many had instances of it when using very large. ...
by griff
Tue Mar 29, 2011 2:27 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: edss not a good marker for ccsvi research studies
Replies: 25
Views: 5181

I agree, we need measurable proof that at least some of the MS symptoms can be improved by venoplasty. If those nasty, useless drugs can fair well with the current neurological tests, then any new treatment claiming that it can cure this disease should do the same. The problem is that most of the pe...
by griff
Sat Mar 26, 2011 2:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: edss not a good marker for ccsvi research studies
Replies: 25
Views: 5181

I did not want to disparage any of your problems with fatigue, but I just think that we should have objective measurements of our improvements and we sould not forget that they are doing a not well-documented trial on us and we pay the bill. So, I think we should weigh the pros and cons when we all...
by griff
Sat Mar 26, 2011 8:52 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: And then I dreamt:
Replies: 24
Views: 4037

Welcome to the forum, griff! From what I can tell, there are doctors doing research and doctors simply doing procedures. Dr. Zamboni has said that we should seek treatment within studies or research, which includes any doctor doing registries. Dr. Hubbard comes to mind, as does American Access Care...
by griff
Sat Mar 26, 2011 7:58 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: edss not a good marker for ccsvi research studies
Replies: 25
Views: 5181

I did not want to disparage any of your problems with fatigue, but I just think that we should have objective measurements of our improvements and we sould not forget that they are doing a not well-documented trial on us and we pay the bill. So, I think we should weigh the pros and cons when we allo...
by griff
Sat Mar 26, 2011 7:20 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: And then I dreamt:
Replies: 24
Views: 4037

Re: And then I dreamt:

And then I dreamt: The result you all know only too well, especially if you are a Canadian with CCSVI. You have had the misfortune to arrive on the wrong side of history, in a world where neurologists rule, and science, evidence, and experience take a ride with you at the back of the bus. You are n...
by griff
Sat Mar 26, 2011 6:20 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: No Valves Now? Causing Trouble?
Replies: 18
Views: 4485

[quote Lyon actually has an interesting thought above ... though neck veins still scare me to have a stent in, considering unless you're in a halo, you move your neck quite a bit (awake and sleeping).[/quote] I talked to some decent IRs and a vascular surgeon who are involved in CCSVI operations and...
by griff
Sat Mar 26, 2011 6:09 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: No Valves Now? Causing Trouble?
Replies: 18
Views: 4485

Im just trying to convince myself to get the valve otomy. In poland last year they found bad stenosis at the valve on one side.After ballooning twice it closed back up on the table,so they asked to put in a stent across the valve. This would effectively make the valve destroyed too. I said no. Now ...

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