After Bologna- What can we do?

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

After Bologna- What can we do?

Postby cheerleader » Thu Sep 10, 2009 6:39 am

For those of us wondering, what can we do? There are many things available to us now.
(Maybe a sticky, NHE? I'll let you make the call...)

1. What we can do to find a doctor to treat CCSVI:

If you are an MS patient or care taker, and want to bring CCSVI information to your doctor- go to
http://www.fondazionehilarescere.org/eng/index.html

Every single bit of Dr. Zamboni's research is available there, for free, to print out under the publications section. Go to the press section and print out the press release from the Bologna conference.

If you live near a major university, call this university, get the name, number and address of the chief neurologist and the chief vascular doctor there. Tell them BOTH you are sending them the research, and you want them to talk about it together about CCSVI. Hold them accountable to dialogue.

Dr. Dake will be having a big meeting with the neurology and vascular departments at Stanford next week. After Bologna, we all believe that COOPERATION is key. Spread the word, hold the doctors accountable-they need to work together for MS patients worldwide.

2. What to do for your own health and well-being-

The evidence is in. The vascular system is connected to MS. If you are an MS patient, you must live life as though you have survived a heart attack or stroke. This means living a life of "cardiovascular health." There are many rules for this type of life, and all apply to MS.

-No more smoking (it advances MS progression)
-No bad fats (stay away from saturated animal fats)
-Exercise...it keep the blood moving and promotes vasodilation
-Limit stress. Learn how to deal with daily frustrations thru meditation, prayer, yoga, and deeeeeep breathing.
-there are many books for cardiovascular health, written by Drs. Weill, Dean Ornish, etc. All would be applicable for you, too.
- If you want to take this further thru supplementation- read the Endothelial Health program at
link to Facebook Page for CCSVI
The Cardiovascular Cure by Dr. John Cooke would also be a good reference book
-Although these measures do not remove a stenosis, they can mitigate some of the damage- until endovascular procedures are available. Every little bit counts.

3. How to spread the word in your own community and beyond:

This is going to be a true grassroots movement. It will mean people talking to each other, to explain a new paradigm.
-If you have had the stenting procedure, and want to talk about it, maybe start a blog. Lew's excellent blog is a great example.
-Carry the information with you - and bring it to doctors' offices....pediatricians, eye doctors, even dentists! All see patients with MS, and believe me, all are interested. My Mom takes the info with her whenever she has a doctor's appointment :) (love you, mom)
-write to medical bloggers, national docs with radio shows, local TV docs, whoever you think might be interested. Send them the official CCSVI packet to read.

It may seem overwhelming, but we are not alone. By working together, we can spread the word more quickly. By encouraging each other to live heart healthy lives, there are self-empowering ways to limit the damage of CCSVI. Everyone matters in this. Everyone can make a difference. We're all connected in this, and we all count.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ErikaSlovakia » Thu Sep 10, 2009 6:53 am

Yes, you are right.
I have started in Slovakia and Czech Republic.
I will try my best.
I have it easier because of my 2 University degrees, so people listen to me.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby catfreak » Thu Sep 10, 2009 6:59 am

Cheer,

If it is OK with you I am going to take the notes you wrote and give them to my PCP and Neuro.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby cheerleader » Thu Sep 10, 2009 7:49 am

catfreak wrote:Cheer,

If it is OK with you I am going to take the notes you wrote and give them to my PCP and Neuro.

Cat


Cat-
Feel free to print out whatever- anything I write on here is public domain (available and printable to all)- and I'm just happy to help. But I do know the doctors' words are alot more impressive to other doctors.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby fernando » Thu Sep 10, 2009 8:07 am

Cheer,

I'm in the process of printing the papers and your notes and put them together in folders to send to vascular doctors and neuros. Printed paper in a nice envelope carry "more weight",

I'll send one copy to Jorge Correale, the doctor who conducted the experiments with helminths in MS patients down here.

One question, do you have at least an estimation about when the procedure will be available in Italy for the rest of patients? As I've said before, besides being Argentinian I have Italian citizenship and Italy would be my "natural destination" to get treated asap.

Cheer, thank you so much. God bless you, really.

Fernando
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Postby guitarguy » Thu Sep 10, 2009 8:13 am

I am lucky enough to be a patient of Dr. Frohman so I won't have to go through all this. but, I do feel many people will have a difficult time having doctors listen to them.

Wil be interesting to see what Dr. F does here in Dallas. Impossible to see him nowdays because most of his time is doing research and very little time seeing patients, most of the time we are forced to see one of the other neuros at UT Southwestern.
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Postby ErikaSlovakia » Thu Sep 10, 2009 8:44 am

Good news.
A doctor from Slovakia, radiologist has just asked me for permission to add information about CCSVI and MS on his blog.
It will be done next week.
I also go to see him next Monday, he wants to do Doppler, even he knows, he will perhaps see it OK, but he has got so much information from me, that he is sure about CCSVI.
Erika
P.S. So I travel to Polish borders and I must stay one night there, because it is very far from my place.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Jamie » Thu Sep 10, 2009 8:51 am

Erika! You are amazing!
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Postby Ernst » Thu Sep 10, 2009 9:52 am

Something happens in Finland too. Just got mail from one of of our top ms-researcher (whom I mailed in summer about ccsvi) and he said that there is some discussions with neuros and vascular guys - they know about Zamboni research, about bologna, about Michael Dake, etc. So - hopefully things happen here too.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: After Bologna- What can we do?

Postby ibex » Thu Sep 10, 2009 10:03 am

cheerleader wrote:By working together, we can spread the word more quickly.

I want only to let you know that we're working on the German-speaking world.
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Postby ErikaSlovakia » Thu Sep 10, 2009 10:05 am

Jamie wrote:Erika! You are amazing!

Well, I have been working on it longer. I knew what I was doing and I wanted him to suggest it.
I know his blog.
The second thing" he lives only 120 km far from Dr. Simka. So, one day...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby radeck » Thu Sep 10, 2009 11:06 am

I think something that is very important on the way towards furthering this cause is to understand why the general MS "specialists" community has not picked this up.

Is it only because they haven't heard enough about it? If not...

Is it because the theory is so simple that they feel embarrassed for not having looked at it much earlier? I mean, if MS lesions are mostly towards veinous outflows it seems an obvious thing to do to look at the single major veins getting blood from the brain to the heart.

Is it simply because they are so used to the assumption that MS is auto-immune in origin?

Do they possibly already have alternative theories for why lesions are almost exclusively close to venous outlets, as opposed to diffusely scattered or towards arterial inlets?

The most important aspect in my view could be: Do they think it's "nothing new" in the sense that venous and blood flow anomalies in MS patients brains have long been known? Do they think that jugular stenosis is just an extension of those venous problems further down towards the heart? In other words, if you fix the jugulars, the problem persists in venous structure closer to or inside the brain? Cheer wrote she heard at the conference that MS brains have 40% less veins. Could this in some way be traced back to the stenosis in the jugulars, or is it caused by auto-immune issues (I'm aware that researchers at Bologna showed arguments against auto-immune involvement in the jugular stenoses, but this doesn't necessarily apply to the intra-cerebral veins, which are closer to the inflammation-action)?

I just feel it's important that we don't take a "We have to convince them" stance but try to understand where our discussion partner (established MS specialists) is coming from as much as possible.

This is just a random collection of thoughts I just have. Sorry if it's a bit disorganized.
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Postby CureOrBust » Thu Sep 10, 2009 4:47 pm

I have rung and spoke directly with a Dr who is, from what I was lead to believe, the medical director for research for the Australian MS Society. He was very interested in the possibility, but I think his hands are tied until even more research is published.

He has asked I keep him up to date as details are published.

I think a few (hundred) phone calls to the MS society in your own country will bring it to the forefront a little quicker.
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Postby Frank » Thu Sep 10, 2009 5:15 pm

Hi all,

the Bologna conference was a great leap in the right direction of cooperation and spreading the word, and as everyone else I'm very happy to see things grow!

Regarding what can be done now I would like to add another (more reluctant) point of view. I'm not really sure if my idea/analogy applies for CCSVI but it might be favorable not to be too aggressive in bringing out the idea in a possibly too optimistic way.

In the past other science/medical trends (gene-therapy, stem cells, maybe even viral/bacterial role in MS) have been overhyped in a too early stage of knowledge and possibilities.
This hype leads to a strong interest/funding at a level where the new method is not able to prove itself because it needs more time to define and standardize itself. Maybe its necessary to develop some new technology/technique.

Thus the hype is then followed by public disappointment - at this time the new method was not able to fulfill the hopes it raised. Funding/interest will therefore be taken away.

In the future, when real progress in the method will be achieved, it will be more difficult to raise attention again.
People will remember it with a bitter aftertaste and might even think/remember that (at the first attempt) the method had failed all together, even though it was just too early for it to produce the predicted results.

I really dont want to thwart anyone, its just what came to my mind...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby daverestonvirginia » Thu Sep 10, 2009 6:06 pm

cheer thanks so much for putting all this information out for us.

I really believe this whole ccsvi area is so interesting and positive for us, but sometimes I feel my head spinning trying to keep up with it. Trying to tie what I thought was true with these new discoveries.

I found what you said about "living a life of "cardiovascular health." Really helped me connect some dots, at least in my mind.

I have been a big believer in the Best Bet Diet and I believe it has worked for me and others. If you take a look at the BBD it is great for cardiovascular health. ccsvi also presents a method for the blood brain barrier source.

I would like to get Ashton Embry's thoughts on this.

Thanks again, Dave
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