CCSVI Aftercare?

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

CCSVI Aftercare?

Postby heartsandskulls » Fri Nov 05, 2010 7:01 pm

I was looking through threads and I didn't see one that listed what the aftercare regimen was for CCSVI.

Does anyone care to write up what they were supposed to do immediately following getting "liberated"?

What did you have to do immediately following the procedure?

What kind of check ups did you have to get?

Are there any medications that you have to take? If so, what are they and for how long do you have to stay on them?

Are there any symptoms to look for that require immediate medical attention? IE How do you tell if you're developing a clot or a stent is migrating?

Thank you!
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Postby Interrupted » Fri Nov 05, 2010 7:37 pm

Post removed as OP offended.
Last edited by Interrupted on Sat Nov 06, 2010 12:07 pm, edited 1 time in total.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby Interrupted » Fri Nov 05, 2010 7:53 pm

Post removed as OP offended.
Last edited by Interrupted on Sat Nov 06, 2010 12:07 pm, edited 1 time in total.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby heartsandskulls » Fri Nov 05, 2010 7:58 pm

I have done a lot of research and come across varying aftercare but did not find a sole thread dedicated to a very important part of any procedure. This is why I posted this thread so that there would be one place for people to be able to read through the different types of aftercare being followed/prescribed out there.

It makes sense to have one thread to be able to compare and contrast the different lines of aftercare for the varying degrees of procedures being done. Implying that I haven't done enough research is insulting and does not help the goal that I was trying to do to help others who would otherwise have to dig through hundreds if not thousands of other threads. Considering most of the threads in this section are simply titled CCSVI, does not make it easy to figure out which threads are relative to the information that is being sought.

I only recently signed up for this board but I have been reading it for a long time as well as dozens of other MS boards.
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Postby dunkempt » Fri Nov 05, 2010 8:14 pm

HeartsandSkulls -

No one meant anything bad; it was an easy (though wrong!) assumption. I spend a lot of time every week talking to people who know very little about CCSVI at all; when someone starts asking questions it's easy for me to slip into that role.

And you're right, a dedicated aftercare thread (I'm surprised there isn't one already) is a good idea.

In a way I am jealous of you; my trip for liberation was such a great experience, I would give a lot (though not another 10 thousand dollars...) to be able to do it all over again.

Good luck and best wishes!

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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after care

Postby BadCopy » Fri Nov 05, 2010 8:24 pm

Follow this link
http://www.communitycare.com/Practices/ ... efault.asp

Community Care Physicians
go to the Q&A section and it suggests what they want for after care
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Postby heartsandskulls » Sat Nov 06, 2010 1:07 am

As with any procedure, it's easy to say "ask your doctor", which I will clearly do at my consult but I thought this was a place to discuss what we are going through and have been through. I would rather know what other people have been directed to do so I can ask my doctor why he does or doesn't prescribe similar aftercare.

Just like if we were discussing nose jobs or heart transplants, everyone has a different experience and collecting our experiences serves more for the greater good.
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Postby Interrupted » Sat Nov 06, 2010 12:00 pm

My apologies for not being a mind reader. Bad on me, clearly, for at least trying to help where you had no responses from anyone else.

"Implying that I haven't done enough research is insulting..."

Only in as much as all of us are continually reading more and more information and tesimonials as they come in so we can stay as up to date and informed as we can. I'll say no more on this matter after this, I was simply trying to blanket help without any indication of how much you did or did not know.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby thornyrose76 » Sat Nov 06, 2010 12:26 pm

where the heck is the q+a section at community care physicians website?
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Postby Cece » Sat Nov 06, 2010 12:27 pm

thornyrose76 wrote:where the heck is the q+a section at community care physicians website?

try this:
http://www.communitycare.com/Practices/ ... VI_FAQ.asp
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