Thanks, Keri. I went over there and read about 10+ patient reports of their before and after results of the procedure and most of them have only had subtle improvements, but in some cases, it is too early to tell??

They did report some neck and shoulder pain due to the procedure, lasting about 2+ months.

There was one 100% positive report of, "my MS is gone".. She had the procedure about a year ago..(the longest)

It didn't look quite as positive as I expected, but time may change my mind.:confused:

Here is the link to the reports...
http://www.thisisms.com/ftopict-8346.html

Great
 

This would be awesome but no more false promisses.After all the disappoitment of MBP8298....another miracle crash and burn.The last letter from that study is that my drivers licence could be taken.Watch for studys its a very lonely thankless job! Jim:(

CCSVI in Multiple Sclerosis
 

Just joined Neuro Talk. I find this CCSVI discovery amazing. Is there suggested methods towards fast tracking this procedure? :cool:

If you find them, let me know! :) I called my GP today and made an appointment, but the secretary said that to see a vascular doc will require referral. I'm not sure the waiting list here for vascular specialists.

Won't see my GP till Dec. 18 as it is.. I may call offices of vascular doctors regardless of GP and run it by several secretaries.

I'm skipping my neuro on this and letting HIM call me if he catches on, since my last words in his office were "contact me if there's a big breakthrough or orals become available". We'll give him time though :p

Welcome to Neurotalk Kazzman, nice to meet you :hug:

Welcome to NT Kazzman!

Not sure about the fast tracking. I would think the pharmaceutical companies would put up a pretty good fight against that since they may lose lots of $$$$'s. Sadly, it's not about the patient.

Sally, I think some people aren't necessarily viewing CCSVI as the "cure" in terms of eliminating all symptoms but as a way to stop MS progression. In other words, for some people they just want to remain stable where they are and not get worse. Whether or not the brain can repair itself after the damage is already done and the veins are opened up after the procedure is another story. I've been reading a lot on thisisms.com about CCSVI for the past few months. You are right that nothing really "miraculous" is jumping out but people are reporting improvements in fatigue (no more napping), cognition, reduced spasticity, ability to walk longer without resting. The doctor at Stanford has only been doing this since May. I guess time will tell! :)

I forgot to add that the MS Society of Canada just announced today they will give out research grants to study CCSVI. That is really significant stuff!!

http://www.mssociety.ca/en/releases/nr_20091123.htm

Also check out: http://www.mssociety.ca/en/research/...091021_faq.htm

This is also completely awesome. Go MS Society!

Like you mention, I've accepted I'll likely live in pain I already developed for many years to come, but I want to prevent further damage.

Hey... think maybe the MS Hug is actually this restriction of flow in the neck veins? I thought of the Hug right away. .. ... :eek:

Thanks, Natalie.:)

We are not all of one type of MS, so, Maybe this is the one to stop progression in the people who have this restriction and for the rest of us, it's LDN, :)

They did say that one of the first signs of having this CCSVI is, Vericose veins in the legs. I don't have that.

When I told my DH about CCSVI, he asked, "Then why does MS affect people mostly in areas far from the equator?"
Hmmm...maybe more than one thing can hit the body...
anyway, I'm definitely going to bring this up at the next neuro visit.

Welcome to NT, Kazman!:D