Tipping point

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Tipping point

Postby bigfoot14 » Mon Feb 07, 2011 1:55 pm

What was yours?

My wife and I started following the developments on CCSVI in November of 2009.... we read the Zamboni papers, signed up on tims, and followed the debate....and came to believe that this was/is the best option out there....

But the thing that put us over in to the "let's do this" camp, was seeing with our own eyes the results that a good friend of ours had from the procedure.....
User avatar
bigfoot14
Family Elder
 
Posts: 110
Joined: Mon Nov 30, 2009 4:00 pm
Location: State of confusion (Illinois)

Advertisement

Re: Tipping point

Postby codefellow » Mon Feb 07, 2011 2:20 pm

bigfoot14 wrote:But the thing that put us over in to the "let's do this" camp, was seeing with our own eyes the results that a good friend of ours had from the procedure.....


Please tell us more. I really like hearing stories like that.....
User avatar
codefellow
Family Elder
 
Posts: 120
Joined: Tue Nov 18, 2008 4:00 pm

Postby Cece » Mon Feb 07, 2011 5:14 pm

My tipping point came straight from the research here and tims reports. When I was diagnosed with MS, I read everything there was to read on it, in the research, and it led no where. Then with CCSVI, it snapped into place with so well with what was already known (and what was not known) about MS. There was so much previously unexplained that CCSVI explained.

Getting my ultrasound and MRV done and seeing my own CCSVI for myself was another highlight.
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby dan46 » Mon Feb 07, 2011 10:59 pm

My tipping point came when I realized that after 33 years of ms I probably shouldn't be waiting for trials. I'll be 65 in a few months so I am not looking for anything spectacular. I am however willing to take what I can get, if you know what I mean.
Last summer my ms seemed to be progressing so I decided it's time to seek treatment. I have been lurking here since the summer of 2009. Lots of reading here at tims and it played a rather large role in my decision to get treated. So thanks to the ppl on this board I will be treated next week. I think I'm getting excited. I'm not about to miss out on a chance to crawl out of this cog fog. Stopping progression would be nice too. Ms has taken a lot from me but there is still a lot there to try to preserve. If the procedure doesn't help at least we can say we tried. With out all of you I would never found this tipping point and I thank you for it.
dan46
User avatar
dan46
Getting to Know You...
 
Posts: 11
Joined: Mon Aug 02, 2010 3:00 pm

Postby PointsNorth » Mon Feb 07, 2011 11:45 pm

My tipping point was the chance of being treated on the same continent by people with some experience with the procedure. I felt like the potential benefits outweighed risks by that point in time and I was happy to wait on the sidelines for the few months leading up to the procedure. I'm considering further intervention based on info here on TiMS. The decision as to when I'll "jump" again will have to be based on the expectation that I will get lasting benefit from the next procedure. My current rate of progression and $$$ are considerations also.

PN
PointsNorth
Family Elder
 
Posts: 498
Joined: Mon Sep 04, 2006 3:00 pm
Location: LeftCoast Canada

Re: Tipping point

Postby bigfoot14 » Tue Feb 08, 2011 6:15 am

codefellow wrote:
bigfoot14 wrote:But the thing that put us over in to the "let's do this" camp, was seeing with our own eyes the results that a good friend of ours had from the procedure.....


Please tell us more. I really like hearing stories like that.....


the outward signs that I can see are: she is walking better and she is not having to stop mid-sentence to find a word.

Things she tells us are better that we can't see: cog-fog is gone, she is seeing better, reduced fatigue and she has more energy.

I believe this last one, because the last couple of times my wife has called her, she's been out shopping by herself (I think she's trying to make up for the last several years of having to shop with her husband, who like me, gets no enjoyment from the shopping experience)
User avatar
bigfoot14
Family Elder
 
Posts: 110
Joined: Mon Nov 30, 2009 4:00 pm
Location: State of confusion (Illinois)

Postby esta » Tue Feb 08, 2011 2:46 pm

my tipping point - after watching W5 on that fateful sunday in november, and going on tims and realizing, if i don't get my name on a list to get treated i will only get worse. so i went to poland in may and again in august. having ms for over 35 yrs and ppms for over 10, i can do no more for now with my stent and a thickening inside it. i shall just wait...not unhappily i might add, i have lots of improvements-i just want more. these are exciting times!!!!!!
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby newday » Wed Feb 09, 2011 2:23 am

My tipping point came when CCSVI went viral on the Internet, as I was afraid I may have missed my opportunity. I had been following the CCSVI thread since April 2009 when it was a forum thread buried at the bottom of the list. Thanks to Cheer and the others who shared their experiences here on TIMS! As my family doctor says...I am a PLB (Persistent Little Bugger.) The research was and is compelling. I had the procedure November 2010 and the improvements have been nothing short of a miracle.

After two years of Tysabri and the rebound effect that left me wondering if my status had change from RRMS to SPMS, I am making plans instead of wondering how long I can keep working. I have been able to completely go off three medications for nerve pain, cut back on my fatigue medication, and have needed to take only one migraine pill since my procedure. I would and will pursue intervention in a heartbeat. My life has changed! My family, friends, and co-workers are in awe of how my visible symptoms have changed.

Because of my experiences along this journey, some of my perceptions have changed. Unfortunately, I no longer have faith in my neurologist, am extremely disappointed the NMSS, and am becoming more cynical about the pharmaceutical industry. I do feel the need to share my experiences with CCSVI and support the CCSVI Alliance.
Welcome the brand new day :)
User avatar
newday
Getting to Know You...
 
Posts: 21
Joined: Sat Jan 15, 2005 4:00 pm
Location: PA


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users