Your GP, emergency if it is that bad, or if you have the insurance or money back to the Dr. that performed the procedure.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
CCSVI treatment available in the U.S.!
- thornyrose76
- Family Elder
- Posts: 462
- Joined: Mon Nov 23, 2009 3:00 pm
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.Firas wrote: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!!!!!Trish317 wrote:Yes, they would be able to do something.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
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?
- Vivianne766
- Family Elder
- Posts: 190
- Joined: Sun Mar 07, 2010 3:00 pm
- Location: WNY
- Contact:
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.
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.
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.
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.
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.
- Vivianne766
- Family Elder
- Posts: 190
- Joined: Sun Mar 07, 2010 3:00 pm
- Location: WNY
- Contact:
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.
- gothicrosie
- Family Member
- Posts: 55
- Joined: Thu Jul 01, 2010 2:00 pm
- Location: California
- Contact:
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!
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
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
Haskal
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.
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.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.
"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
- naychergirl
- Family Member
- Posts: 50
- Joined: Tue Jun 22, 2010 2:00 pm
- Location: South Florida
- Contact:
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.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.
many blessings,
Marie
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