Life returns for MS sufferer following U.S. surgery

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

Re: Life returns for MS sufferer following U.S. surgery

Postby Cece » Tue Mar 29, 2011 2:49 pm

scorpion wrote:Can any of the doctors or members on here please explain to me how "opening up a vein/s" enables someone to be able to cross their legs when they could not before???

Our doctors are always off at one conference or another this month!

I seem to have a low inflammatory version of MS (no oligoclonal bands in spinal tap, no change in MRI over a number of years, no apparent impact from the DMD I was taking). So rather than an inflammatory explanation, I have leaned toward the explanation that the restoration of blood flow allows the spinal cord or brain to fully function and enables better transmission of nerve signals through the damaged-but-not-dead nerve cells.

The lady in the article was specifically talking about spasticity and spasms in her leg before saying that that was gone and she could cross her legs at the computer now. I don't know much about spasticity and spasms, what is the cause of them? That would help answer the question of how they were gone.

I also should have quoted her talking about her motor improvements (going from needing a cane just to walk short distances to needing it only for long distances or when she was tired). Motor improvements are a big ticket item.

I think if someone is at TIMS who does not yet understand CCSVI, they'd do well to trust Dr. Sclafani and Dr. Cumming's professional opinions and to trust the anecdotal stories coming back from patients since we hear those both good and bad.
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Postby MrSuccess » Tue Mar 29, 2011 4:07 pm

let's all keep one thing in mind ..... it would be foolish to tally the post CCSVI treatment results .... based on singular patient reports.

This applies ..... for Positive CCSVI results and Negative CCSVI results .

This is why a registry is so important .

My straw poll .... at present ..... has the Positive results ..... outnumbering the negative .

Take away the stenting problems ..... and the positive CCSVI results seem to be greater.

that's how I see it .....



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Postby thornyrose76 » Tue Mar 29, 2011 5:25 pm

Resulting studies down the road will basically con firm what it looks to be at present, that angioplasty works for some not others.
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Postby Lyon » Tue Mar 29, 2011 5:34 pm

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Last edited by Lyon on Wed Jun 22, 2011 4:25 pm, edited 1 time in total.
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CCSVI

Postby blossom » Tue Mar 29, 2011 6:24 pm

i have to admit that i know more about ccsvi now than i did before i went for treatment. i also because of wearing my own rose colored glasses did not think much about scar tissue or clots as it was not really a likely thing to happen. i was at the point i felt i had to try. i am very grateful that i was loud and clear that i did not want stents no matter what they found. and yes, it concerns me big time that my veins will stay ok and not scar and clot and loose them. to me i hope they can come up with something to prevent this.

as far as ccsvi goes i still feel that it has a lot to do with our symptoms--at least some of us.

i get ticked off that this factor that has been known about for a very long time and conveniently put in the closet. had dr. shelling's work and other great dr.'s been able to pursue their work as aggressively as we have had drugs shoved at our face i think that a lot of people would not be suffering the way we are today.

but it is what it is at this moment. and , as far as ccsvi helping someone cross their leg--i can very easly accept that. did you ever have your arm fall asleep and try to lift it--won't work--but get the blood agoing and up it goes.
i know that is off the wall a bit but think about it--if our blood flow isn't right{the river of life} or say your spine is out of line whether it is damaging a nerve or blood vessel how can it not have something to do with the symptoms some of us have?

that's why it is so important to have dr.'s from all walks get in on this and welcome their expertee. ccsvi is real ccvbp is real the door has been opened. i just don't want dr.'s with closed minds in anyway trying to stop this any longer. there is way too much work to do and i'd love to hear all good stories. "would love to be able to tell one about myself someday"

and even if there are the eyes of big daddy or whoever watching this site--so what----maybe aome of them should hop in and help fine tune the things needing to be addressed. ccsvi is not going away ccvbp is not going away so why not help get this all worked out sooner than later?
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Postby thornyrose76 » Tue Mar 29, 2011 6:28 pm

You have the better point, I agree! :)
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Re: Life returns for MS sufferer following U.S. surgery

Postby NHE » Wed Mar 30, 2011 2:56 am

Lyon wrote:At this moment there are 6 registered, 2 with their ID's hidden and 30 guests.


Not all guests are real people sitting behind a computer and a web browser. Many of them are search engine bots.
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Postby eric593 » Wed Mar 30, 2011 4:36 am

I've also noticed the # of people here reading and/or participating has definitely waned in the past few months. So many people who used to post regularly suddenly vanished without a word or note about how their treatment went. And just the # of people browsing has declined a lot too. The # of new users interested in this seem scant as well which would seem to be opposite what would be expected if more and more people were having wonderful results and spreading the word. I don't see all these new treating doctors with impossible wait lists as demand grows either. I'm not sure what this forum is representative of or if we can extrapolate to the treatment's efficacy or the theory's merit. No one seems to be "clamouring" the way they used to; there's a different "feel" now.

I wonder if it represents a more realistic understanding of CCSVI and treatment's effects or lack therof, and the realization that the risks seem much greater than the initial sense that there were no risks.

Whatever the reasons, there's definitely been a loss of activity here, less follow ups, and fewer browsers.
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Re: Life returns for MS sufferer following U.S. surgery

Postby Lyon » Wed Mar 30, 2011 5:12 am

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Last edited by Lyon on Wed Jun 22, 2011 4:26 pm, edited 1 time in total.
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Postby HappyPoet » Wed Mar 30, 2011 5:35 am

Right now at 9:30 a.m. EST, the stats say:

"There are currently, 164 guest(s) and 40 member(s) that are online."
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Re: ccsvi

Postby erinc14 » Wed Mar 30, 2011 5:44 am

Lyon wrote:
blossom wrote:i think we have all taken off our "rose colored glasses" when it comes to the total picture. but, why does there have to be a good guy bad guy?

as long as someone isn't acting like mr. filthy mcnasty and has a story or opinion that may not be what we want to hear but it is what it is-what's the problem? same goes for the good stories-what's the problem? i love hearing them.

i'd rather hear all good-i wish i experienced good but i'm very happy for those who do. and, my heart aches for those who are experiencing the which way do i go now.


I don't like it to seem a "good guy/bad guy" situation either but since the very beginning of interest in CCSVI I've been trying to point out that there are people who have heard a little about CCSVI and who desperately want nothing more than to come here and reinforce the miraculous things they've heard about CCSVI.

It's nothing more than a cop-out to carry the mindset that if someone doesn't investigate CCSVI well enough and goes into debt and takes the risks and has a bad outcome without having done their homework they only have themselves to blame. From the beginning has been the place for laymen to go to find out about CCSVI and we should always be mindful that there are ALWAYS multiple people out there who may never register but are reading what we say. At this moment there are 6 registered, 2 with their ID's hidden and 30 guests.

With it in mind that there are FAR more guests than people who are able to ask questions or respond it's important to keep in mind (I think) that:

Because MS is a chronic, progressive disease a good percentage of those people are on one income or disability with dial up internet or limited time to search for info at a library computer

Obviously because optic neuritis is such a common MS symptom, poor eyesight can make it time consuming and a huge chore to exhaustively search thisisms to get as well rounded picture of CCSVI that someone would need to make a reasonably educated opinion.

Not flattering but needing to be addressed anyway is that cogfog and fatigue hammer a high percentage of PWMS so comprehending some of the complicated things about CCSVI they are reading at thisisms is harder and more time consuming and fatigue compounds the problem and makes it that much more likely that they'll trust someone else's opinion rather than making their own educated opinion. Which way are they going to lean? Likely towards what they most want to believe.

It's not up to me but I am and have always been fine with someone's educated decision as to whether they want to be liberated or not but I think we owe it to the loved ones of others to make a balanced view as accessible as possible and not repeatedly scour the internet for glory stories and even at that mine them for quotes which only highlight the especially swooning quotes.
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Postby Cece » Wed Mar 30, 2011 5:57 am

[...]but I think we owe it to the loved ones of others to make a balanced view as accessible as possible and not repeatedly scour the internet for glory stories and even at that mine them for quotes which only highlight the especially swooning quotes.

I missed that, lol, is that a reference to me? I've posted press articles with negative outcomes too but there has only been two of them that I've found so far, amid dozens of positive outcomes in the Canadian press articles. I think this is a natural bias of the press and not a scientific finding! They seem to print the more dramatic stories, as those can be easily found. Personally I love to read them, and it is a part of the balance as you say; there is plenty of doom and gloom being spread here too. ;)
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Postby HappyPoet » Wed Mar 30, 2011 6:12 am

At 10:00 a.m. EST, the stats say:

"There are currently, 194 guest(s) and 38 member(s) that are online."
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Re: Life returns for MS sufferer following U.S. surgery

Postby HappyPoet » Wed Mar 30, 2011 6:24 am

Lyon wrote:I'm sure Arron's going to love the advertising dollars dropping by 75%.

Lyon, have you considered making a monetary donation to TIMS, most especially because YOU have more posts than anyone else?

In FACT, you are a mere 41 posts away from a whopping 6,000 posts :!:

I'm sure Arron would appreciate your support since you're the biggest user of TIMS.

Edit: Lyon, just in case you're wondering, yes, I have donated money to TIMS as NHE knows.
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Postby erinc14 » Wed Mar 30, 2011 6:37 am

yessiree " Fair and Balanced ". now where have i heard that 8O
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