CCSVI treatment available in the U.S.!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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thornyrose76
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Post by thornyrose76 » Thu Jul 08, 2010 5:18 pm

Firas wrote:Well if it is available as you said: where and how much does it cost? and if patients suffer from certain outcomes after the treatment or the treatment didnt work, would they be able to do something? Thanks :)
Your GP, emergency if it is that bad, or if you have the insurance or money back to the Dr. that performed the procedure.

pvns2005
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Post by pvns2005 » Thu Jul 08, 2010 5:39 pm

3.
Last edited by pvns2005 on Fri Jul 09, 2010 11:36 am, edited 1 time in total.

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Trish317
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Post by Trish317 » Thu Jul 08, 2010 5:40 pm

Firas wrote:
Trish317 wrote:
Firas wrote:Well if it is available as you said: where and how much does it cost? and if patients suffer from certain outcomes after the treatment or the treatment didnt work, would they be able to do something? Thanks :)
Yes, they would be able to do something.

People here at TIMS are very knowledgable about where treatment is available. If you want to know, all you have to do is read the threads here.

Do you have some sort of agenda claiming that treatment is not available here in the US? Because in claiming that to be so you, obviously, do not know what you are talking about. Are you attempting to recruit people to travel somewhere else?
I did not say anything or try to do anything. All what I was doing is getting some clarifications based on my basic research, and here you are jumping into judgements and conclusions about Agendas and Recruiting!!!!!
I apologize but it becomes suspicious when someone comes here and posts something like CCSVI treatment is not available in the United States and Canada. Unfortunately, it is not available in Canada and people are working very hard to change that. But it definitely is available in the United States. People are contacting doctors every day and getting more doctors on board for testing and treatment. Angioplasty is not an illegal treatment. Interventional radiologists and vascular surgeons perform the procedure every day on patients for various conditions.

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mangio
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Post by mangio » Thu Jul 08, 2010 6:43 pm

Trish, pm!!!!!

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Vivianne766
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Post by Vivianne766 » Thu Jul 08, 2010 7:16 pm

That was a lil' disturbing...
..... Aaaaaaaanyway.....I am sending my best wishes to
those of you who will be liberated soon. Flash, good luck to you. I'm waiting for some good news and who knows maybe some pre-after videos.
:)

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Rieja
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Post by Rieja » Thu Jul 08, 2010 7:49 pm

@ Flash and Boo, will you be doing pre and post vids? I'd like to see them! :)

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BooBear
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Post by BooBear » Fri Jul 09, 2010 7:58 am

Rieja, I thought about a "before" video, but I am not sure that it will help.

I am fortunate in that I can walk fine (with some episodes that alter my gait, but nothing consistent). I can talk fine. As of this writing, I can see fine.
The only motor issue that has been with me is the numbness in my left hand- that is a remnant of my 2008 relapse that may be here to stay.

My issues (worsening ones at that) are fatigue and cognitive. I find myself searching for the right words, someone's name, an appointment. I still struggle with fatigue. I don't know what a video would do to show improvements there, other than my "anecdotal" testimony.

My only expectations of the procedure is that it may help stop the progression. Only someone with MS understands what it is like to live with the knowledge that something could go very wrong without warning- I don't want to live like that anymore.

All I want is my life back.
Three veins angioplastied.  One renewed life.  

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FlashHack
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Post by FlashHack » Fri Jul 09, 2010 9:56 am

I'll try to do some videos. I did some balance benchmarking this morning with our Wii Fit Plus video game. I also am participating in a gate study at OHSU where they strapped sensors to my legs back in March and collected data on how I walked and stood from a sitting position. They'll test me again in September, but they didn't count on my liberation. I'm hoping the researcher will wonder if his machine is broken. :wink:

Right now I am just wrestling with my hopes to try to keep them under control. You hear such a wide range of results and wonder where your's will fall.

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Vivianne766
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Post by Vivianne766 » Fri Jul 09, 2010 9:56 am

BooBear, You'll get your life back. Keep us updated. Best wishes for your liberation. Can't wait to hear some good news BB.
:)

... and Flash I hope you'll get great results. I'm keeping my fingers crossed.
I hope you'll knock that machine dead with surprising improvements.
Liberation to us all. :)

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SandyK
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Post by SandyK » Fri Jul 09, 2010 11:57 am

I spoke with the office of the doctor I was in contact with in Seattle. He is going to meet with Dr. Zamboni at the end of July and then get rollin'. Bad news is I won't be getting the procedure before my wedding and the good news is that he is really working to do this the right way. I'm so disappointed. My visions of me walking without help at my wedding were dashed. I'm trying really hard to stay positive and be patient. It's killing me.

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gothicrosie
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Post by gothicrosie » Fri Jul 09, 2010 3:07 pm

Just thought I'd add to the mix, I am in California and treatment is available here. I think it was already mentioned that angioplasty is a valid medical treatment for valid medical issues.

I just received my scan results from the Hubbard Foundation and I have CCSVI. I have also secured an appointment with a local FSIR who is "In Network" for my insurance (yippie). Now I have to convince him to treat me. :)

If I can't convince him, I have a list of IRs I am going to try that are covered by my insurance....if I fail with the list, I'll return to Dr. Hubbard. I am on that list at least.

Wish me luck!
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10

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MaggieMae
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Haskal

Post by MaggieMae » Fri Jul 09, 2010 4:46 pm

Does anyone have any more information on Dr. Haskal from Baltimore, Maryland? I did talk to someone there as soon as I read about him on this forum and left my husband's name and our phone number. I wasn't told any additional information and no one has called back. Thanks.

Cece
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Post by Cece » Fri Jul 09, 2010 5:05 pm

SandyK wrote:Bad news is I won't be getting the procedure before my wedding and the good news is that he is really working to do this the right way.
That good news is very good news, if he's taking the trouble to meet with Dr. Zamboni, then he sounds like another one who is in this for the long haul. Best wishes for a joyous wedding and a joyous liberation.
"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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SandyK
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Post by SandyK » Fri Jul 09, 2010 6:44 pm

Thanks so much Cece :D It's gonna be a great wedding.

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naychergirl
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Post by naychergirl » Sat Jul 10, 2010 6:42 am

Nunzio wrote: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.
I am in South Florida too. I have an appointment for 11/15 in Poland, but I'd much rather stay near home. I PM'd you.

many blessings,
Marie

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