What a wonderful trip!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by CNClear » Sat Oct 03, 2009 10:09 pm

and sorry, Jamie...

wanna make up, now? C'mon...this is bringing back bad memories of no one wanting to play with me, cuz I was an only kid and too bossy!

..................................hated not being in the good cliches.....and you guys are a really really good one! :?


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Post by Ernst » Sat Oct 03, 2009 10:48 pm

This discussion about placebo/ccsvi shouldn't be in this topic.. I'd rather read the wonderful effects of stent-surgery and how Mel is doing. Operation results like her's are really incredible and I'm always happy to read good news here. So keep writing Jamie and others, your experiences are very important to many TIMS readers.
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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Post by guitarguy » Sun Oct 04, 2009 6:10 am

Lyon wrote:
patientx wrote:
cheerleader wrote:I just want to say that the doctors I saw today are much better behaved at questioning than some folks online here....they understand the nuance of "tone". It is possible to question people without being nasty or deriding them...and yes, debate is very important, but so is respect. I was impressed by that today. Even when people had completely different opinions (venous stenting was one such topic)...everyone spoke with respect.
Point well taken px.

For future reference, personal opinion and threatening behavior is the new gold standard for objective science:
Jamie wrote:The FACTS ARE:

1) Mel now works full time
2) Mel is now back exercising when she chooses to. (She used to run 10ks and half marathons pre-MS.)
3) Anyone who says the fatigue was in her head to my face will get punched in theirs.

You now what's funny, I was defending Jamie, then he turned around and attacked me. By the way Jamie I am in fact really a female, but for future reference I will make a note of it not to disagree with you for fear that you will punch me in the face. :roll:

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Post by MrSuccess » Sun Oct 04, 2009 10:52 pm

Okay ..it looks like things got a little sideways here . :roll: Some of my posts were misunderstood. Radek seemed to be the only one that got the message. I aided and abetted everything by using the bold function in my comments. To my horror ....when I submitted my posts ..MOST of it was in bold ! Yet my preview was normal text. Yikes. When I saw the post , I thought - OhOh , that 's going to look bad :oops: Lesson learned ...no more BOLD until I learn how to turn the damn function off ! OK Cheer ? :?

My opinion on CCSVI. I think it is real. I have been following the progression of the idea here on This Is MS. Thanks to some very bright people , this concept has captured great interest. And hope.

In addition to providing us with an amazing amount of eye opening research material , these incredible people have actually stepped up to the plate and put themselves into the operating theatre. WOW.

I cannot wait to read the posts of Dignan , MrRhodes , and most of all our dynamo ...Cheerleader. I also read all other CCSVI posts ....everyones opinion here is important. Even Bob's. :wink:

You cannot help but feel the frustration , agony , and another dozen emotions that various posters build into their posts. And this is a great place to deal with it. BUT . Some of the frustration and comments are a little over the top......and I have suggested on several occasions that perhaps the best policy is to be respectful ....while disagreeing.

But as Cheerleader has posted ....even the doctors can get rude. Sad.

I found this incredible forum while searching for information on MS drugs.Then followed the TOVAXIN[sp] and Revimune [sp] stories.
Which in turn , lead me to CCSVI.

Like thousands of others , I was content with lurking , as eventually any question I had ...would be posted by others. When some CCSVI questions I had , were never addressed, I registered.

To repeat : I think the CCSVI concept is solid. It looks like the answer.

However there are some serious problems and hurdles facing CCSVI .

They are : [1 ] So far , few doctors are onside with this.

[ 2 ] M S Society's are ignoring or luke warm to the idea

[ 3 ] Neuro's seem not interested

[ 4 ] The media attention - or lack of - is glaring

I hope this all changes when Dr.Zamboni publishes his work. :idea:

Mr. Success


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Post by CureIous » Mon Oct 05, 2009 8:55 am

Just a quick fyi to everyone in case you don't know, you can edit your own posts at any time. Just click the little edit button on the upper right and you can delete your entire post or modify it. I'll go back and make sure all of mine are relegated to smiley faces. Think that would be a great way to return the thread back to it's original "owner". Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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Post by SammyJo » Mon Oct 05, 2009 9:54 am

You cannot help but feel the frustration , agony , and another dozen emotions that various posters build into their posts.
This is why we must put on our objective hats, and remove the emotion.

For those willing to post their procedure results, please go to the post
CCSVI tracking project

Thank you Radeck for following up on what Joan and Marie started, and thank you Sharon for making the first entry on the new thread.

Nothing but the facts, and no comments allowed. There are plenty of therapeutic venting opportunities on this forum, which is part of the healing process. Now we can have the crucial details all of us are craving on each brave subject, and results can be tabulated, so we'll have a one page snapshot that tells the stent-o-teers story, like change in EDSS.

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Post by Jamie » Tue Oct 06, 2009 5:55 pm

Hey guitarguy, I apologised! Or I meant to.

I got a bit heated the other day, for that I really am sorry.

This whole thing can be emotive for all those involved.

I got flashbacks to when my family was struggling to understand Mel's MS and I overhead them deriding her as 'lazy' etc when I knew what a struggle she was having to even try and entertain them.

Not a good reason to lose my temper such as I did on here, but there you go.

Chums everyone?

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