Sept 8, 2009 Bologna CCSVI conference- finalized notes

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

Postby Loobie » Thu Sep 10, 2009 5:50 am

fernando wrote:Cheer,

My gratitude to you and your efforts are beyond words. God bless you.


DITTO!
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Postby skydog » Thu Sep 10, 2009 8:32 am

I am in Awe with having read your conference notes. The enormity and power of this conference will change our lives and those to follow in our footsteps forever. I write this with tears of joy streaming from my eyes. Thank You! Dr. Cheer. Peace and Health to All, Mark
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Postby chrishasms » Thu Sep 10, 2009 8:45 am

123
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Postby Jamie » Thu Sep 10, 2009 8:49 am

Fantastic.

Thank you.
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Postby cheerleader » Thu Sep 10, 2009 9:06 am

chrishasms wrote:This is absolutely wonderful Cheer. Correct me if I am wrong:

Did I read in 2 different places within your postings that:
1. No one is too far gone to benefit?
2. Even with SPMS and PPMS there was improvement but it just took longer for it too happen?


Chris-
What the Ferrara/Bologna team is saying is that approx. 18 months after the Liberation procedure, progression stops in all progressive MS patients, and the disease course is changed. This is why they claim no one is" too far". The full results will be in the Vascular Surgery Journal next month as far as MRI changes, EDSS changes, brain atrophy, iron deposition, etc. They are not claiming miraculous healings. There were progressive patients at the Italian press conference, and some needed walkers, canes, etc. But the claim is that progression stops. Who knows what the future may bring...

The RRMS patients have even better results, and show an end to relapses, as long as the veins remain open. Any relapses in the Liberation procedure patients happened because there was restenosis in the jugular veins. I think it's important to differentiate between disease cessation (ending) and healing of damage that has occurred. These are two separate categories.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Thu Sep 10, 2009 9:30 am

123
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Bologna

Postby GiCi » Thu Sep 10, 2009 9:37 am

Dear cheerleader,
I am sorry we did not get to know each other in Bologna.
You report of the meeting is superb and will have a tremendous effect.
Well done!
GiCi
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Postby Sawdoggie » Thu Sep 10, 2009 10:18 am

I have been lurking since I found this thread a couple of weeks ago. So, first time poster, but big fan of everyone on here. This is the most exciting news that I have read since I was diagnosed this past spring. I know that it wasn't that long ago and right now I am pretty much symptom free, but I hate being told I have something that they a) aren't sure really what it is, b) not sure what causes it, c) not sure of the exact mechanism of the $2700/mo worth of drugs is, and d) there is no cure and it is degenerative. Needless to say, I am still in the pretty pissed off category versus accepting. Here is where I think CCSVI really gets interesting (at least from my perspective)... I was diagnosed with hemochromatosis about ten years ago when I went to the doctor for a physical because I was feeling run down and "foggy" (probably my first onset of symptoms but it just didn't smack me in the face or raise the doctors curiosity like going numb from the chest down). I felt better after going through a pretty aggressive program of phlebotomy which pushed me into the anemic category as my ferritin levels fell from 600+ to under 10 over the course of a year. My theory is that as I became more lax in managing my iron levels (kids, owning a business, yadda, yadda, yadda) the MS crept back in. I'll know more in a couple of weeks as I am having an iron battery done in about a week. I am seriously considering trying to be tested for CCSVI as it , if I have it, could explain how this would specifically have an impact on the CNS. I have been following my own research thread on the hypothesis that the hemochromatosis (iron) and MS are somehow related. As many more people have hemochromatosis than MS, it may be an aggravating factor that coupled with CCSVI is the trigger. Like MS is it much more prevalent in people of northern European descent and it is vastly underdiagnosed. I feel CCSVI neatly ties the two together and I also believe that sometimes the simplest answers are the most correct. Has anyone else on here had a history of hemochromatosis, high ferritin levels, or other iron disorder? Thoughts?
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Postby Arcee » Thu Sep 10, 2009 11:24 am

Joan, I have been reading and re-reading your post - - on planes, in bed, anywhere I could! What an incredible gift you are giving all of us. Thank you so very much. And I am so glad that Dr. Dake gave you a shout out during his presentation :D We're all screaming from our rooftops too.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Loobie » Thu Sep 10, 2009 11:28 am

Fe sucks!!
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Postby Sawdoggie » Thu Sep 10, 2009 11:41 am

Loobie wrote:Fe sucks!!


Maybe we can blame it all on living in the rust belt!
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Postby cheerleader » Thu Sep 10, 2009 12:17 pm

The reason for the iron is that there is microbleeding into the brain...yes, iron depletion and chelation could be considered as therapy....but stopping the reflux and blood leakage into brain tissue is the most effective means of stopping iron deposition -as evidenced on the SWI pictures.
thanks for all the kind words, guys. honored to serve-

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Thu Sep 10, 2009 12:36 pm

Loobie wrote:Fe sucks!!


Quick thought on this: aren't women more likely to be anemic and in need of iron supplementation, due to natural phlebotomy, than men? This would (perhaps, in a very simplified manner) argue against iron oversupply as the main root cause of CCSVI and MS, since women are more likely to get MS than men.
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Postby cheerleader » Thu Sep 10, 2009 12:47 pm

radeck wrote:
Loobie wrote:Fe sucks!!


Quick thought on this: aren't women more likely to be anemic and in need of iron supplementation, due to natural phlebotomy, than men? This would (perhaps, in a very simplified manner) argue against iron oversupply as the main root cause of CCSVI and MS, since women are more likely to get MS than men.


...it's not iron over-supply. It's because of microbleeding into brain tissue. Venous reflux causes deoxigination, microbleeding and tissue death.
Read the section in the notes from Dr. Haacke- he saw all of this in MS brains using SWI and SWIM MRI technology.
Amounts of iron in the blood has nothing to do with the cause of CCSVI...BUT it might exacerbate it, thus the looking into chelation therapy.
AGAIN I'LL SAY....it's NOT IRON's FAULT, it's because of CCSVI-
hope that clears it up 8O
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sawdoggie » Thu Sep 10, 2009 1:02 pm

I don't believe that iron oversupply has anything to do with CCSVI or at least I haven't seen anything that indicates that it does. Where I think that the iron oversupply can become an issue in MS is through "iron-enriched" microbleeding so to speak which could exacerbate the localized damage caused by CCSVI. The big hole in my theory still revolves around the fact that women have a higher rate of MS compared to men. Excluding rates (maybe women are more likely to have CCSVI) men, traditionally and statistically have a poorer prognosis with MS when diagnosed in the "normal age range". After normal menopause (when women and men accumulate iron on an equal footing), the prognosis for men and women is similar. The iron overload may be merely an exacerbating factor that helps speed progression. Just observations, but I believe it fits well with everything I have read on CCSVI as the primary cause.
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