This Is MS Multiple Sclerosis Community: Knowledge & Support

How douchey and premature of them.

tilt

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My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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wow. cece, i'm curious why you are posting a twitter comment from february? is there recent posts making the same claim or has the hospital worked to eliminate that phrase?
this issue is really about some people trying something else because the ir's can't provide any other service. speaking for myself, i either deteriorate rapidly to assisted care and further or i try to restore some blood flow.
when my surgery is done, i won't be making a video but i will be posting about my results and what led me to that type of procedure. i would hope that i will get the same respect that many of the other posters get.

This from Tina at Excel.
Jan,

I checked all the twitters accounts and none say anything about permanently removed! I see this mess was now shared on thisisms.com UGH………..

They must of took a screen shot at before it was taken down. There are many people that do twitter and I have contacted all of them and made certain this is not worded improperly anymore. NEVER SAY PERMANENTLY! NO one knows this!! We are hoping this is an answer for some which veno-plasty didn't work and lasts………………….only time will tell.

Thanks for the help I have been completely exhausted trying to correct this! I too have MS remember and get overdone at times. I need help to fight this battle….I do NOT like Maureen whatsoever she is just mean and inappropriate. We have taken down any wrong terminology used. Please share this…………

Have a great night my friend. Oh, I got your images being downloaded today they should be up by tomorrow I am hoping. Until then…………

Cheers!


Tina Jenkins
Lead Medical Case Manager
Tina@CentroMedicoExcel.com
800.211.0690

Seeing as Excel (Tina) has been working very hard at tracking down all the sources that have "permanent" in their text removed. Obviously not an easy task in today's' world where information and misinformation are spread at lightning speed. CECE it would be in the best interest of people searching for accurate info if you would please remove your post and which would stop further spread of this misinformation.
Why post an old twitter comment that is not longer there and has been removed because it was inaccurate?

I have seen recent statements from patients who think the Excel surgery will be permanent.
I am trying to watch out for patients. I think there could be a place for vein grafting for people who know exactly what they're getting into. Advertisements work against that. This is true for CCSVI IRs who advertise too.

I greatly appreciate that Excel Hospital is in agreement that this surgery cannot be said to be permanent and that there are risks which include restenosis.

So Excel is responsible for what patients are saying????????????????????????????????????????????

This is totally not the case and being the first patient for this procedure I am totally aware of what the surgery was all about. They are fixing the blood flow issue not saying anything about a permanent fix for ms. Cece why don't you pick on other places that have done stents and are now out of business. alot of bashing of Excel Hospital is that because you are a paid employee of a competitor. There are many facilities which climbed on the bandwagon with unskilled Doctors who have since closed or worse continue to do procedures. In case your wondering I am enjoying the benefits from my surgery in January, as my family doctor stated he said the procedure really did save my life. I have no hidden agenda and would really like to share my experience as it unfolds. Misinformation and mudslinging is not cool as alot of people with MS need to get treatment today not tommorrow as time is running out for some in dire conditions.

I am not paid by anyone.


http://ccsvi-ms.ning.com/profiles/comme ... t%3A199330

Here is an example of a patient saying this is a permanent fix. I think no one should not be saying this.

Excel is not saying this. Excel is not responsible for what patients say.

Just to be specific My words have been altered and manipulated. I am hoping it is a fix for the blood flow issue , again CeCE why the hate on for Excel what is your vendeta against them. Wow! I am totally speechless!!!!

Very few things are permanent. Death is one of them. Words on the Internet is another.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I added bolding but otherwise it is word for word what was said.

The objection is to saying it is a permanent fix for the veins. There is no long-term data on this. Clotting and failure of the vein graft can be expected in some percentage of the patients.

We're also talking about two separate procedures: jugular patch angioplasty, in which the jugular is cut lengthwise and a section of another vein is patched on making the jugular wider; and vein grafting, in which the jugular is cut circumferentially and another vein grafted in to continue the jugular. Vein grafting may be more prone to failure than jugular patch angioplasty. These are both different procedures than the usual CCSVI venoplasty which is done with balloons from inside the veins.

"Getting rid of symptoms permanently" is overstating the likely benefits. "Permanent fix [for the veins]" is understating the risks of restenosis and vein graft loss. We need to be clear on what risks and benefits are when considering a procedure.

There are a lot of statements (using the words permanent, only, etc) made by patients of many different treatment modes. A Dr or organization cannot be held accountable for what others are saying. Excel seems to be doing their best to eliminate the phrase and I don't think it's necessary to beat a dead horse.

Neigh, neither do I! Don't beat us live ones, either, please! And no fair flogging.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience