NeuroTalk Support Groups - Why is there no mention of CCSVI on this website ?

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- - Why is there no mention of CCSVI on this website ? (https://www.neurotalk.org/multiple-sclerosis/147829-mention-ccsvi-website.html)

My MS Specialist, at KU Med Center, although interested enough (in 2009 or 2010, I think) to seriously consider applying to be one of the sites/physicians to conduct a research study on CCVSI has, at my last several visits, been very wary about it now.

She believes there are still too many unknowns (ie: does MS cause the vein blockage, or does the vein blockage cause MS, etc, etc) and too many risks.

My MS is not at a stage, even though I currently receive disability (SSDI) that I need to start trying risky, unproven procedures.

I'm not telling others what to do. But, just sayin'... CCVSI is not for me, at this point.

~ Faith

Quote:

Originally Posted by SallyC (Post 759359)

Here is a bit of negative feedback about CCSVI......

http://www.thisisms.com/ftopic-12342...erasc-240.html

aww sally, Thanks! I am so hungry to see BOTH sides of this fence, and so far I have only been exposed to those that either are afraid of it, or are going out of their way to ram it down your throat. Thanks!:hug:

Meganmom....I have a few questions.

Did insurance cover the procedure?

What is the doctors name, and where in FL did your daughter have the procedure done?

I am very glad to hear that this has worked for Megan!! :)

Yes, I was aware of the folks that had restenosis or poor outcomes. But honestly, at the rate that Meg was progressing, was frightening. From the time that her symptoms started she was never without them. Some of them got worse and let up a bit but most came and stayed. The paralysis was dramatic and quite upsetting to a young single woman.

We discussed stenting and reasonable outcomes. Mostly the goal was to stop the progression.

As I understand CCSVI, it's as if your brain is being partially smothered all day everyday. A low grade chronic hypoxia along with some inflammation from the iron deposited by turbulent blood reflux. It's really a terrible environment for the brain to endure.

Then I knew that the risks associated with venoplasty were realatively low. It's been done for 30+ years. The kinks are worked out.

And mostly I knew that the earlier that she got treated the better her outcome would probably be. To do nothing was to guarantee her more brain damage, potentially permanent brain damage.

So restenosis and worrying about restenosis took a backseat.

Megan says that she would get it done again in a heartbeat. That the procedure was a snap.
AND her insurance covered it all but a 30$ co-pay.

Also of note, she changed neuro's to one that was at least skeptically curious and a friendbof the Interventional Radiologist. The neuro thinks either she wasted her time and money OR she is a very luck girl.

I think she is one of the luckiest girls in the world.

Hi Cat and Welcome to NT from another Judy. Your daughter's story is amazing -- wouldn't it be wonderful if the procedure worked as well for everyone! Those drug companies would really take a hit in their profits. This is my 35th year living with this miserable disease and have been taking LDN for quite a few years. The mainstream DMD's weren't for me -- killer side effects. Now I do use a powerchair full time since my legs no longer work. I've definitely thought about CCSVI, but with such advanced MS the positive outcome doesn't seem as hopeful. :confused:

All the best to your daughter for the future. Miracles DO happen! :hug: