This Is MS Multiple Sclerosis Knowledge & Support Community

scorpion wrote:...
CureIous I do not know what to take as evidence pro or con anymore.

...So I do not know what to believe. 1 minute, 1day, 1 month, 1 year. All these "time tables" and the same procedure.

If you are unsure of what constitutes 'evidence based medicine' there may be experts on this forum who can help you.

It is certainly not Internet Forums, social networks, press releases, or advertising. My advice would be to stick to published work in established, peer-reviewed medical journals. What to believe there? Up to you.

CureIous wrote:I'm just wondering why Lyon and his contigent don't start their own thread instead of overpopulating this one, which to my view wasn't listed, "anything the so called skeptics want to say right here".

Mark

Totally. Get a room you two.

That the original poster started a different thread, rather than come back to this one, seemed to be something of a sign....

NotFound wrote: Totally. Get a room you two.

They keep saying "No Vacancy" in big neon letters.

.

1eye wrote:

NotFound wrote: Totally. Get a room you two.

They keep saying "No Vacancy" in big neon letters.

Hey the only things the "skeptics" have been pointing at is the possible "dead end" sign at the end of the tunnel.

scorpion wrote:Hey the only things the "skeptics" have been pointing at is the possible "dead end" sign at the end of the tunnel.

Now what a cruel joke that would be, to put a dead end sign at the end of a tunnel.

.

I could not have told you, in October last year, when this discussion took place, but I'll tell you now: you *can* get follow-up in Canada, by competent, caring doctors. If you do not have an appointment and a treatment plan for follow-up: Don't Leave Home!

1Eye, the challenge is often finding those caring, compassionate docs who are willing to do follow up care, especially when the position of the College of Physicians and Surgeons and governments is so unclear about this.

Annbanan, you started this thread months ago. How are you doing now? I hope you have improved since then. Please let us know how you are now.

Rokkit wrote:

scorpion wrote:Hey the only things the "skeptics" have been pointing at is the possible "dead end" sign at the end of the tunnel.

Now what a cruel joke that would be, to put a dead end sign at the end of a tunnel.

that still amuses me.

With the new caution about the very large balloons, which were so exciting back in October, Annbanan may have been right. Back then, clotting seemed like one of the few risks, now we have scarring and collapse of the vein. It's complicated.

For myself, my MS is mild but my CCSVI was severe and I was suffering from the CCSVI directly (as seen in the relief of hypoxia immediately post-treatment and restoration of colors, etc). I am very glad to have had it done but it has worked out for me, it doesn't for everyone.

Dr. Zamboni's recent advice in an interview on youtube was to wait if you have mild MS but to seek compassionate care or participate in a trial if you are deteriorating.

I went to my anger management appointment today and this doc complained about the College of Physicians and Surgeons. I don't feel so alone. Thought you might like a little poem I wrote:

Is the friend of my enemy the enemy of my friend?
If you can't be with us, do you have to seek our end?
Is the enemy of my enemy my friend?

When the summer has come and it's June once again
Now they open up that place the picnic tables live in
Where I'm learning how to print with a potato

Now I fell off the slide where the stairs cut my arm
So a girl wished the blood all away, all away
All the power of a wishing, it was in that girl today
So the blood went away, went away, all away

I'm leaning on that old picnic table with my chin
And I'm learning how to print with a potato

So I say what do you want to do want to do
I don't know, I don't know what do you what do you
Well I say I don't know what do you want to do
What do you want to do I don't know, what do you
I don't know do you I don't know too don't know too
I'm just learning how to print with a potato
Is the enemy of my enemy my friend?

Annbanan wrote:I would like to advise everyone planning on getting liberation treatment to please think it through well. If you are in the advanced stages of MS I would do it, but if you are like me, with minimal symptoms and trying to 'get things fixed early', I would advise caution.

Annbanan,
I just saw this, haven't read the rest of the replies to your post, so I apologize if I am repeating what others have said, but I want to comment. It seems those who have the most remarkable symptomatic improvement with CCSVI treatment are those with the least amount of disability, earlier in disease progression.

And, those with more advanced disability may have a harder time dealing with recovery issues and achieve fewer symptomatic benefits of treatment.

So, I'd suggest that people with mild MS have potentially the most to gain. If your MS is not mild, you might be better off waiting for the treatment technology and medical science to develop further, as you might be better off where you are instead of also needing to deal with recovery issues and unexpected impacts of treatment.

--Tracy

........

questor,
I'm afraid I agree with you...I'm PPMS, and have a stent and have intimal hyperlasia, but I know I'm way beter off than doing nothing. I know the answer is just around the corner. for mild, its been proven to work the best for.

do your research, and go for it...