CCSVI question

Aarcyn · 03-08-2010, 02:19 PM

At this point in time, can this surgery be done if one can pay for the cost of the procedure?

I know it is in trials but what about getting it done regardless of being in the right place, i.e. Buffalo or Stanford.

jeep4wd · 03-08-2010, 04:52 PM

I'm going to ask my neurologist tomorrow if I could have a vascular specailist look at my latest M.R.I's.I can just imagine the reaction"wait and see"At a score of a close EDSS of 6 there is no time

In Canada we love to wait...

Hope you have a team that is on your side

Hug's

Riverwild · 03-08-2010, 05:58 PM

It's my understanding that the procedure is paid for by insurance since it is a medical problem. You don't need permission from your neurologist because it is a vascular problem not a neurological problem, even though in theory, it affects neurological health.

I'd ask Natalie. She's had it done and may have insight as to the ins and outs of what to do.

Aarcyn · 03-08-2010, 06:49 PM

Quote:

Originally Posted by Riverwild

It's my understanding that the procedure is paid for by insurance since it is a medical problem. You don't need permission from your neurologist because it is a vascular problem not a neurological problem, even though in theory, it affects neurological health.

I'd ask Natalie. She's had it done and may have insight as to the ins and outs of what to do.

Thanks. I know from Natalie's thread that she did not get the results she was hoping for. I had questions to ask her so I will include the insurance aspect.

RedPenguins · 03-08-2010, 07:03 PM

You can try to find someone locally to do it - and it should be covered by insurance. If you want to pay out of pocket and get it done like NOW - then you can travel out of the country (Poland is doing it now). Natalie found someone locally, so we know it isn't impossible. Check out the TIMS board on the topic (www.thisisms.com - they have an entire forum on CCSVI). Stanford has put a stop on the procedures, as they are gearing up for a trial at some point in time (no dates released yet)...and Buffalo is only doing testing at this point, though I just read that they paused that, too.

I definitely think it may be worth looking into - some people have seen fabulous results (barring the 2 people who died after the procedure). I almost went up to Stanford last spring, but am so dang happy with the HiCy, that there was no need. I'm not 100% convinced it's the 100% answer for MS, but some people are. It does not take into account any of the auto-immune issues present in MS.

Just a word of caution on the TIMS board - they seem a little nutty (some of them anyhow). Many there are certain there is a conspiracy with the MS Societies and big pharma to block CCSVI from happening/moving forward. However, some of the stickies have good information. I like to read the conspiracy thoughts...they make me giggle. LOL

Good luck and keep us posted!

~Keri

Koala77 · 03-09-2010, 06:24 PM

I don't want to try and change your mind, but I did wonder if you'd seen this Cyndy? I'm not sure how I feel about the procedure for myself now, but I would take information like this into consideration when making up my mind.

Quote:

Researchers at Stanford University have halted treatments for chronic cerebrospinal venous insufficiency (CCSVI) according February's edition of the journal Annals of Neurology.

The decision came after two people experienced serious side effects following stenting of the jugular veins, a procedure thought to correct CCSVI. One patient died from a brain haemorrhage following the procedure in August and another required emergency open heart surgery in November after a jugular vein stent dislodged into the right ventricle of the heart......

http://neurotalk.psychcentral.com/sh...300#post630300

Aarcyn · 03-09-2010, 06:39 PM

Thanks Koala. I am more interested in the balloon feature rather than a stent. I believe (correctly?) that the original Liberation procedure does not use stents.

I would love to know if my veins are clogged though. I am following Marc's blog to get an idea.

Plus the procedure is very new.

But oh to dream of feeling my feet.

I remember when I was having my gall bladder removed, my doctor had me go to Cedar Sinai because the doctor in my small city had only done the operation once.

Koala77 · 03-09-2010, 06:43 PM

That's good to hear Cyn. and a balloon repair should be a lot safer.

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
CCSVI-I can't help but think that there actually my be something to this!	Riverwild	Multiple Sclerosis	75	06-30-2010 07:23 PM
I was tested for CCSVI and may join a trial	Natalie8	Multiple Sclerosis	40	02-27-2010 08:47 AM
CCSVI: Separating Fact from Fiction	marcstck	Multiple Sclerosis	23	12-27-2009 02:36 AM
Ccsvi	Jules A	Multiple Sclerosis	3	09-13-2009 12:08 AM

Site Navigation

NeuroTalk Online Support Groups

CCSVI question

NeuroTalk Forums