springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Curious who has been tested and what your results were and what info you can share. What were your treatments and did anyone have the actual surgical procedure.
Thanks for any feedback On this topic.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
My twin did about a year and a half ago and she felt wonderful. But she's clogged back up again.
She wants to do the procedure again since it was covered by her insurance (she has an MS diagnosis) and it was a piece of cake.
Posts: 1761 | From USA | Registered: May 2006
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I looked into it for Autonomic Dysfunction but decided against it. It's invasive. I would hate to go through it and have to repeat it.
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I would pm you if you empty your mailbox.
Posts: 1834 | From US | Registered: Oct 2008
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Have you tried Doxycycline? When I first had CCSVI like symptoms it felt like I had a blockage to my head. It felt like I was going to have a stroke.
I could feel the veins in my neck impeding the flow of blood to my head. My headaches, brain fog, dizziness were unbearable.
I was given a few ABX, but nothing worked for that until Doxy. I could not believe how many symptoms it took away. Most likely it killed many things, but it also put Borrelia into cyst form. I gradually got worst over time, in terms of other & new symptoms.
My head, neck, & CCSVI are never as hellish as it was. Be warned that in the beginning of Doxy, it will increase your head pressure. It will also kill some bacteria & make you feel worst. I almost gave up on it & felt like I was getting worst.
After the 3rd week on it, I just kept on getting better & better & even had energy back during that time.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
I was tested in Sept. using the doppler. There is a center in Atlanta.. It is a painless test.
The only downside is you have to lay very still. The test took me about 2 hours.
My results were borderline. So, since my insurance wouldn't pay for the surgery (5,000) and it may or may not work, I decided to wait.
I think if I would have meet all the criteria, I would have had the surgery.
Hope this helps
Posts: 83 | From Tennessee | Registered: May 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thanks all. Still researching Yes I've treated with doxy without help described I feel the CCSVI is just caused by biofilms but when You have treated that so many years and still show a blood blockage and a highly positive CCSVI test it makes You feel like you need a rotter rooter run through your veins And they should be doing a clean out procedure and not just The stents. That will be next I am sure of it. I believe the varied success rate is because that haven't been cleaning out the blockages mechanically and sucking it out before implanting stents and also a after care protocol to help keep the biofilms from rebuilding and fibrins from replanting all along sides should be highly formulated to sustain as long a duration as possible.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I was not aware that using stents with this procedure was common. I know the person who handled my procedure (and many others in my area) did not use stents for me, and I think he rarely used stents. That was something he was sure to discuss with the patient before the procedure, whether stents might be used if the success desired was not achieved without them. They do have additional risk, as they can come free and block blood flow into the heart. I think because of this, the doc who did my procedure generally recommended against them, but perhaps he might use them in very extreme situations (if the person was very sick and had little hope without them).
Posts: 1927 | From se usa | Registered: Mar 2010
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