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 !!!
Thanks jr5646. I did go back and read what I wrote and I probably overreacted. I understand that if someone is progressing you want to do whatever you can to stop this monster and CCSVI is hopeful--it makes more sense than any of these drugs and the fact that is a structural problem that can be fixed is remarkable!! I'm sorry you lost hope recently but glad you've found it again in CCSVI.
I couldn't tolerate Copaxone or the inteferons. I went on Tysabri even though I didn't have a lot of clinical symptoms because I was told my brain was full of black holes and according to the doctor "that clearly showed my brain wasn't healing and therefore I should go on something strong." Like you I also saw it as a stop gap measure until something better came along. My mother got diagnosed with MS a month before I did. She has PP. So like you I have looked into everything and anything and want to be aggressive with my treatment because I don't want this thing progressing. I guess you can only weigh the benefits and the risks of each treatment and your personal context to decide what is right for you. The Tysabri is holding things at bay but I'm getting closer to the #24 mark and worried about PML. So I got on top of the CCSVI quickly. I can't make a decision about surgery until I see Dr. Dake but I'm trying to keep an open mind between two options -- yes for surgery or a DELAY for surgery. I will say that the migrating stent incident in one of our great pioneers gave me reason to pause.
This is just a wretched disease and all of us get emotional sometimes. I do believe hope is WAY important--it just needs to be tempered with a little objectivity. The problem is sometimes our emotions get the best of us. Hope there are no hard feelings.