PRIVATE MESSAGE

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

PRIVATE MESSAGE

Postby dania » Sun Aug 07, 2011 10:15 am

This is a private message that sent to me.

"I've literally quit posting because of the constant badgering against anyone who makes statements perceived as being "against" ccsvi.

I'll never understand how they think that someone affected by MS would ever be against something that could be helpful?

If ccsvi really is all they'd like us to believe, why do they feel they have to protect it so strongly?

At any rate, although they've worn me out it's good to see you stand your ground and I'm sure I'm not alone in feeling that way. "
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Postby dania » Sun Aug 07, 2011 10:27 am

Second private message.

"As you are finding, I found that there are a lot of people out there who silently rooting for you but are afraid to speak up. I still empathize with the people who consider 'SOME PEOPLE' a source of accurate information but I finally realized that I can't save the world and LOTs of people never tire of going on the attack in the effort to confuse the situation.

How is it beneficial to anyone to intentionally confuse and camouflage the truth as they do? I'll never understand their single minded goal of protecting the reputation of CCSVI above everything else."
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Postby civickiller » Sun Aug 07, 2011 11:03 am

Some people have put all their faith in in CCSVI so when somene, says i want more proof that it works before i spend $10k and when it might make me worse, the faith people thinks that person is against CCSVI when in reality they are not, they just to be safe.
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Postby 1eye » Sun Aug 07, 2011 11:26 am

In my country, sick people are allowed to die rather than let them pay cash to have the procedure done, let alone have it done on provincial or any other health insurance. This brand of treatment is sicker than they are. Say nay all you want, but let me (and them) have angioplasty.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby fee001 » Sun Aug 07, 2011 11:28 am

H

We are all individuals have different beliefs likes and dislikes and oppinions that we are entitled to have.

We may have the same diagnosis but that in some cases is our only thing in common.

It must be very confusing and upsetting for new visitors to witness confrontation and angst over a particular subject.

Sometimes it is necessary to agree to disagree and move on

Fiona
I do my own research, and find my own answers Its good to talk
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ccsvi

Postby blossom » Sun Aug 07, 2011 3:43 pm

there are pro's and con's to many ms treatments as anything else. ccsvi is the main topic here and there are a variety of pro's and con's in the stories we have all had to tell before and after treatment. at first-it was like God had finally answered the prayers that many of us have wanted wellness for such a long time. but, as with many things, the con's started appearing.

these things should be told-good or bad-in order for someone making the decision of getting treated. when i went, there were no bad things that were being reported. you either got better or stayed the same basically. BUT, we were not hearing of anyone actually getting worse afterwards. especially cases like dania's or rici's. myself, i got an instantly numb leg out of it and i feel i have deterioted at a faster rate. had no improvement. and stay concerned about vein damage.

for other's it is the yellow brick road they were looking for.

all in all i feel this is a great site to get info. about ccsvi. definitely ccsvi has brought new life to the cause and treatments of ms "and other health problems". with more research and things are moving faster but not fast enough for some of us, ccsvi has taken the symptoms they named ms out of the box that had become stagnant following the route and "theory" for too many yrs. that ms was all about autoimmune and should be treated as such. makeing drug co.'s richer and richer while patients became sicker and sicker.

bottom line, look at the pro's and con's and proceed with caution if that's what you want. or wait until more is known. had i known then what i know today, i would have definitely waited.

no fighting to all this. this is a discussion board. the good and bad pro's and con's.

i feel dania and some others has a result from the ccsvi treatment that has to be told. I DON'T SEE IT AS BASHING CCSVI THE CON'S OF CCSVI ALL HAS TO BE DEALT TOO. THE RESULTS THEY HAD ARE PRETTY SCAREY. but time and research hopefully will address these things. in the meantime, everyone has their own mind and will make their own choices.
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Postby HappyPoet » Sun Aug 07, 2011 6:42 pm

Well said, blossom. :)

I believe pwMS should be tested/treated for Atlas vertebral (C1) misalignments before they are tested/treated for CCSVI.
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Postby fee001 » Sun Aug 07, 2011 7:26 pm

Hi!

I know Blossom, it must be very distressing that it is not the answer people hoped it would be.

But hey! answer will be found. scientists and Drs have had 70 years to come up with something. Praps its now our turn to have a little delve, we know more about our own bodies and its reactions especially to stress than we are given credit for.

So onward I plod, and weigh up some issues, pros and cons.

talking of cons reminds of my son who is called Connery Anyway I digress.

By the way Blosso, you have a good way of putting things.

Fiona
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Postby civickiller » Sun Aug 07, 2011 7:30 pm

HappyPoet wrote:I believe pwMS should be tested/treated for Atlas vertebral (C1) misalignments before they are tested/treated for CCSVI.


+1

Im getting my atlas misalignment corrected before i get the sugery, hopefully by then, at least 6 months, more information on the surgery is found on how to improve
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Postby blossom » Sun Aug 07, 2011 8:23 pm

happy poet--you know i agree 200 per cent with what you said. it just doesn't make sence not to. i would hope that the doc's involved in this soon start putting all their knowledge together and working together. dani's case is not an isolated case. now what for cases like hers? and by the way as we are aware it could be one of us. somebody soon i hope is coming up with a better back up plan than is offered. 0!!

civickiller good plan. if atlas adj. is helping and you are not getting worse the longer you put off the ccsvi treatment the more they will know.
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Postby blossom » Sun Aug 07, 2011 8:27 pm

fee001, i'll bet your son connery is a sweetie and more of a pro than a con.
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Postby MegansMom » Mon Aug 08, 2011 10:01 am

The reason I have become somewhat of a CCSVI proponent( maybe even a zealot) is that in medicine sometimes things are overlooked and ignored that should not be. An example of this was Ignaz Semmelweis.(google him)
He knew that hand washing was in patients best interests,and he was mocked. Patients suffered and died.

In this century they laughed at the doctors that suggested that ulcers were caused by bacteria too.



In this era we have the rich billionaire Pharma industry basically funding most clinical research or influencing it in very negative ways. Cheating and skewing results in many cases.

As a nurse I realized the promise and connections of Zamboni's theories. I knew there were risks but they were relatively low.

I am never rude to those opposed to CCSVI but I find it difficult to understand the lack of support for research.

Someday in the near future the fog will be cleared and we will know enough to clearly understand the MS/CCSVI connection.
Last edited by MegansMom on Mon Aug 08, 2011 2:56 pm, edited 2 times in total.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby dania » Mon Aug 08, 2011 10:18 am

I do not think most people (here) are against CCSVI. I think most would agree that there is something to it. And from a personal point of view I believe if doctors are able to open the stenosis you get improvements. At least that is what hapenned to me with the first treatment. It was wonderful. It did not fix me completely but I was so much better. But I restenosed after only 1 week. It was so disappointing. I did try again, but I got little improvements that were short lived again. Tried 3 more times but now my veins are so scarred that all the doctors could not do angioplasty.
There is so much more to be learned about this procedure and it is criminal that the US and Canada are not doing something, anything to help us.
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Postby bluesky63 » Mon Aug 08, 2011 1:49 pm

Fee, I also have a son called Con. :-)

There wasn't that helpful now. :-)
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Postby erinc14 » Mon Aug 08, 2011 1:52 pm

there are skeptics on every message board because they have nothing to do and are losers .
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