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

Postby Cece » Wed May 12, 2010 12:41 pm

Thanks for posting this...they are swamped with calls, I think...lots of ringing and not getting through...then I got through, spoke to somone, and the call got dropped! Got through again to a voicemail, so I left a message. It can't hurt to be on more lists.

A difference between this and other studies is that these guys will use stents if the veins don't stay open.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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got my call from the Doc in Albany

Postby rettahb » Wed May 12, 2010 12:44 pm

Now I'm waiting for the scheduler..... he said it would be about a week because they are backed up.

I got to this same point with Dr. Dake...... send positive energy my way!! :D
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Postby Cece » Wed May 12, 2010 12:51 pm

Positive energy to everyone...and to the doctors who are involved!!! I called again, I wanted to talk directly to someone to get on a list or give demographic info, but the person I got to said they were overwhelmed and took my name and number.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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I knew it would happen quick.

Postby rettahb » Wed May 12, 2010 12:55 pm

Good think I jumped..... breath........ must be patient.
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Postby MS_mama » Wed May 12, 2010 1:16 pm

I called them today, too. They said that they are filling up July now, and are planning a formal study for the summer. Their phones are ringing off the hook--once you call and give them your info, a doctor calls you within a few days. My cell phone will be glued to my hip till then...
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby jr5646 » Wed May 12, 2010 1:18 pm

Cece wrote:Thanks for posting this...they are swamped with calls, I think...lots of ringing and not getting through...then I got through, spoke to somone, and the call got dropped! Got through again to a voicemail, so I left a message. It can't hurt to be on more lists.

A difference between this and other studies is that these guys will use stents if the veins don't stay open.


Yeah I'm on yet another list with ya Cece... good news.. but this up and down waiting is on my last quivering nerve!!

Hope this one pans out. I received a call back and gave them my info. so we'll see.

I'll gladly take a stent :) prefer them actually and glad to hear they are / will use them.. The way I see it - risk may be involved, but in comparison to the current course of my MS (DMD's and all) my future outlook is bleak. Well unless of course if spontaneous reversal of progression decides to occur, otherwise I'm screwed.. If you compare the minute risk of angio/stenting vs. continued immune onslaught against my cns, its a no brainer..

I love it when I hear a neuro. say ccsvi treatment is dangerous... I keep thinking, well compared to what? MS is the loaded machine gun just waiting to mow you down.. literally!!!

Not sure about IRB - maybe they don't even need one? and don't even care at this point, just want some relief.

Originally, I predicted June as the month the lid will be blown of ccsvi treatment... Maybe, I was off by one month.

Dr.'s will be competing for our business soon... The AMERICAN way :)

JULY
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Postby newfie-girl » Wed May 12, 2010 1:30 pm

Ndwannabe..............all the insurances accepted are located on their website, the link is on page 1 of this thread........good luck!

[b]Greenfields
the cost quoted on FB is 5K for venogram and angioplasty and 2k if stents are reguired, however, I don't fully understand what exactly that means re: stents....is that per stent plus the 5k????????? perhaps i'm reading it wrong......waiting for a response to clarify from Nadia who posted info. :?
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Postby Cece » Wed May 12, 2010 1:36 pm

jr5646 wrote:Yeah I'm on yet another list with ya Cece...

Wouldn't have it any other way. :D
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rokkit » Wed May 12, 2010 1:39 pm

So apparently when they said "At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment)..." what they really should have said was "JUST LIKE EVERYONE ELSE, WE DON'T HAVE IRB APPROVAL YET EITHER".

I just found out. I'M SO STINKIN' MAD. They are in exactly the same boat as Sclafani right now as far as I'm concerned.

I'm going to leave this thread open the rest of the day so everyone who has responded will have a chance to see it, then I'll probably delete it so no one else gets their hopes dashed.

SORRY.
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Postby ikulo » Wed May 12, 2010 1:57 pm

Do they need IRB approval? I haven't been following Dr.S's thread very closely.
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Postby MS_mama » Wed May 12, 2010 2:11 pm

well as I mentioned earlier they are planning a formal study for the summer so I would assume that in that case it would be under the auspices of an IRB.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby newfie-girl » Wed May 12, 2010 2:16 pm

ROKKIT ....Exactly.. this was my initial concern when I read their website info and it also concerned me and certainly raised a red flag when they indicated they were awaiting approval from the IRB, and when no one else commented, when I posted my concerns :roll: :roll: I figured.... I must have read this wrong :oops: Tks for your take on this as I feel the same anxiety all over again. One step ahead and ten back. Oh, and when Joan Beal posted and seemed excited, that was encouraging. :cry:
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Postby ndwannabe » Wed May 12, 2010 2:46 pm

Rokkit wrote:So apparently when they said "At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment)..." what they really should have said was "JUST LIKE EVERYONE ELSE, WE DON'T HAVE IRB APPROVAL YET EITHER".

I just found out. I'M SO STINKIN' MAD. They are in exactly the same boat as Sclafani right now as far as I'm concerned.

I'm going to leave this thread open the rest of the day so everyone who has responded will have a chance to see it, then I'll probably delete it so no one else gets their hopes dashed.

SORRY.


Blah :(

I got excited there for a minute...

I guess they are trying to get "ahead of the game" by compiling a customer base in advance.
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Postby Nunzio » Wed May 12, 2010 3:10 pm

I was lucky to find a local doctor that became interested in CCSVI and is able to diagnose and treat. My procedure is scheduled in one week in south Florida.
If you are close enough, PM me and I will get you in touch with my doctor.
I will let you know how it goes. He has available cutting balloons and IVUS.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby bretzke » Thu May 13, 2010 1:09 pm

Day 2. Are they still being swamped with calls?
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