This Is MS Multiple Sclerosis Community: Knowledge & Support

I am scheduled to have the ccsvi precedure on jan 11th in albany.
Even though I am going through with the surgery, I do not believe this is the complete answer to MS and I decided to stay on Avonex as long as I can.
I am reading some experiences of some small percentage of people getting worse after the procedure.
I am wondering if any one that got worse stayed on their meds afterwards or if they were even taking drugs before?
By meds I mean Crab drugs that modify the immune system.

You should take a look at this sticky thread - http://www.thisisms.com/ftopict-12342.html

I'd put the worsening down to either the treatment itself exacerbating the CCSVI somehow, a relapse being 'due' and CCSVI treatment not being timely enough to avert it and, finally, to treatment that might have missed problems. Of course, there are veins, like the dural sinuses, that are not ordinarily looked at and may also present a problem. The doctors still have lots of exploration and learning to do.

The majority of us seem to experience improvements, from mild to significant. Good luck!

I searched Youtube for CCSVI and found a heartbreaking series of videos showing a person initially excited, then going off meds against their doctor's recommendations, then relapsing.
When you watch Youtube testimonials, make sure you check the last video the person posted also.
I am sorry to have to share this information.
I do not know what the benefit of CCSVI will turn out to be. I hope there is benefit, but stopping meds seems to be a very risky way to test whether CCSVI works.
Please be careful.

Thanks for your kind responses. I actually am not considering stopping my meds. I am just trying to make sense out of why are some people getting worse after treatment.

All doctors recommend that patients remain on their DMD after CCSVI treatment, even Dr. Zamboni.

Given what we know about CCSVI treatment's success, or the limitations of it for most who undergo it, it seems prudent to remain on DMD treatments that have clinical data to demonstrate their ability to impact MS. For the majority of people, CCSVI treatment is not a "cure all".

IMO, there is far too much that remains to be known about CCSVI and its treatment for people to completely rely on it as a stand alone treatment and forego other treatments that have data to back up their efficacy. We have no objective evidence that treating CCSVI stops MS, and experiential evidence seems to confirm this for many.

I was told I have SPMS and am actually not taking drugs. My MS neuro said about 4 years ago there was no point in taking Betaseron anymore as it wasn't working. The MS nurse in Oct suggested taking Copaxon but I don't know what to do? Any thoughts anyone?

I think that ms might still have an autoimmune nature as well as vascular nature. If ccsvi is one of the answers I think keeping your immune system from attacking myelin might be the other answer after surgery.

But thats just my thoughts

I stopped taking my Copaxone about a month after my CCSVI procedure.

I had been on Copaxone for a year and it was doing nothing for me. CCSVI treatment or not, I would have been going off the Copaxone. Granted, had it not been for the treatment, I would have most likely tried one of the other CRABs.

I am 7 months out from my treatment, off the DMD for 6 months and the improvements are holding. Even my "bad" days are still better than my "good" days before the procedure.

Before treatment I stayed on the copaxone because I was afraid to go off it! Even though I was losing ability at a fairly rapid pace with Copaxone not even slowing it down, I felt like I had to do *something* to try and stop the slide. Does that make any sense?

CCSVI treatment made such a difference for me, that after a month, I was confident enough to stop taking the useless Copaxone.

Having said all that, I don't think CCSVI is the only factor in MS. I will probably be trying LDN now. The side effects of all the other drugs in combination with their questionable effectiveness, makes me want to avoid them. I figure that LDN is a low risk, low side effect solution that may offer some upside.

_________________
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!

I tried Avonex 1 yr, and Copaxone for 3 1/2 years and still relapsed 3 to 4 times a year. I am RRMS. I gave up on the shots and switched to LDN two years ago.

I had been using a cane for 6 years, once I went on LDN I didn't need it and my mood (with the increase in Endorphins you will make) makes you feel great. A natural high, and it helped with some pain too. Relapses slowed to one a year or less. No new lesions either.

I was declining on the shots, but stabilized on LDN. That is why I wanted the CCSVI procedure to prevent progression and relapses, if possible.

Time will tell. I am only two weeks + a few days post CCSVI. JMO
CD