I really am quite confused and dont know for sure if I believe in CCSVI or if I think its not quite what we had hoped it to be, but I am now sitting in such bad shape, that I have decided ..."what do I have to lose to go talk to the man?" so, off I go on Jan 31st.
I will keep you updated.

As I am so irritated by others in the past. I promise to post a video before. IF and that is a LARGE IF I chose to have this procedure done, I will post another PRE video followed by a one month, two month...with written updates.

I ran into a woman named Tracey that had this done, and she is the one that gave me the courage. Her sx are not gone, but much better. She didnt jump off the table and run down the hall, but she doesnt need her cane anymore. She didnt sit up and cry "I can see!" but within a few weeks her vision started to clear. She was blind in one eye, and had bad vision in the other.

I am going to TALK to the interventional Radiologist who does the Zamboni method at the big girl hospital, and see what he has to say about MY veins. I dont think I would have the courage to do a stent, but if this could bring back my vision, I may eat broken glass.

Anyone do it? been tested and refused? advice? comments?

I totally understand, Dej. I think I'd give it a try if my vision were as affected as yours is. Can't hurt....might help.

And thanks for offering to post honest videos about the procedure and your recovery. There are too many posted immediately after the procedure and then none ever again. Makes me wonder if this is as wonderful as it's described as being.

I hope your meeting goes well and I'm looking forward to your updates.

Dej We miss you hun. Wishing you all the best, and good luck. Will love to see your updates.

Good luck with the CCSIV. I've heard both side of the coin. Just don't expect too much and then you may have some improvements.

Thanks and will look forward to your reports.

That's awesome news Dej. I'm always baffled what people are affraid of I mean, could it ever make you worse? and if it works for 2 days doesn't that say something's wrong besides lesions? no brainer to me. Now if I could only find a place down that's not hrs away that's heard of CCSVI & most important - is open minded.

Good luck pursuing this Dej! I hope you get some benefit.

I'm not sure about it either anymore. Short story: saw Dr. Dake at Stanford for assessment and the MRV showed 90% blockage. Came home and found an interventional radiologist who was excited to do it because he was friends with Dake. Got on the table, was pumped with drugs, and they filtered the catheter up. Turns out when they got in they couldn't find the blockages anymore. The IR was puzzled and had no answer. I've been doing pretty well so never followed up on it. But it will be interesting to see what pans out over time.

Good luck, Dej! Let us know how the exam goes and what you decide.

I would do it in a heartbeat if it was not for the cost.

Even with a deductible, it cost a lot and then with restenosis, it cost again.

But I would do it in a heartbeat. I would go to San Diego to the Hubbard Institute since the doctors affiliated with the Hubbard Institute have been doing it for quite a while.

I had it done and had definite improvements. My fatigue is still substantially better now and I no longer use a cane. It will be two years for me at the end of May.

Good luck! Remember, it offers potential symptom relief, not a cure.

Well, Jan 31 is coming up quick, and I am a bit nervous. I am just going to TALK to this guy and ask him a million questions. Then I will let him examine me. and IF I qualify for the procedure, we will re talk then.

My pet peeve was so many showed us videos of them jumping off the table, throwing away their canes, and then a week later we see a new video and then...nothing! Even if it means it didnt work, got worse, needed to be redone, you didnt get all you expected, had to pick up the cane again, I would have appreciated knowing that, so we behind you can make a choice.

I am blessed that it wont cost me a penny IF i choose to do it. I figure I am blind, dragging a leg, cant balance, need a rollator, and so forth. What do I have to lose to talk to the guy.

Will let you know.