This Is MS Multiple Sclerosis Community: Knowledge & Support

I just want to say that Stanford is not open for business anymore. I have been waiting for the phone call from Dake for a couple of months and also got the email that they will not take more patients for now and that I can enroll in the clinical trial.

The stent dislodging and racing to the heart causing open heart surgery and the other problems with stenting certainly made me hesitant and I welcome the clinical trial. I suspect that is probably part of the reason Stanford is not taking more patients. Standford was out of control anyhow, I mean not answering emails and returning calls only if one bombards them really does not work for me anyhow.

Having no progression in 18 months by the way does not show anything unless in a clinical trial setting, I have had zero progression on many occasions much longer than that without being on any drugs during my tons of years with MS.

I will certainly participate in the clinical trial if I qualify and hopefully they will come up with better stents, protocols and procedures.

[
Chris...hint.....before you go on the attack next time, you'll cause a LOT less snickering if you have someone proof read and run the spell check before sending.

I believe you. I believe you.

.

Lighten up man... It was only a joke (hence the ) Maybe the emotional liability is getting the best of you?? Come on... Really.... Seriously, what good is it to know if you have stenosis if you're not going to repair it though??? Nor do I quite understand what benefit it would be waiting for the Buffalo study to conclude. I have to say though, that I commend the folks that join any study... they help us all in the long run.

Me personally though, I can't afford to loose any more function.. it trumps any side effect and or risks of any procedure PERIOD. I'll mortgage my house to pay for this, or any other promising treatment if I have to. I don't want to wait, because of the high probablity of permanent damage occurring - without the ability for repair. The way I see it, is it's taken 10, 20, some even 30 years worth of CNS damage and to entertain the thought that ccsvi will repair this over night is foolish. I've always said from the beginning, that if I could just stop progressing, I'd gladly take it... Zamboni's research suggests just this...

I've been on Tysabri since 10-2007, and knew the risks going in.. I always told myself that it was a stop gap measure until something better came along.. to me ccsvi is it... and trust me, I've looked hard at most if not kept my eye on all of them.. almost went to Johns Hopkins with Chris, right before that I submitted my info. for the tovaxin studybut opted for tysabri instead, tried LDN, messed with supplements, diet, numerous med.s for sysptom control... blah, blah, blah..

Hey, even if things don't work out with ccsvi, at the end of the day, I can at least say that I've done everything humanly possible to try... I owe it to my wife and children, to say the least. I guess maybe I lost hope recently, and ccsvi has brought it back... and oh what a wonderful thing thing it is... we need to especially thank Joan/Cheerleader and Jeff for that.. as well as Zamboni and team and of course all of you who have contributed your experiences... truly a beautiful thing in and of itself. (maybe the emotional liability is getting the best of me too)

I'm sorry if I offended you in anyway, that was not my intention at all... I can only wish you the best, and hope you find relief. I "am" truly happy for you !!!

my mother was diagnosed with PP a month before I was

Oh my I am sorry, but since you have an appointment at Stanford you MIGHT ask about her being seen; in the past Dr Dake was VERY interested in the family evaluations.......