Hi.
That is wonderful! Not the stenoses, these are not. But being proactive. Imagine that you are going to open a highway for many people to try to get their well-being back. This is wonderful!
When I first contacted my surgeon I felt that there is no chance that he will understand, despite being a friend, only to find out that it was one of the most interesting operations in his entire career.
I have come to the conclusion that there are wonderful scientists out there and the only way to find them is through the disappointing road of trial and error. I have found 1 out of 3 radiologists that performed the Doppler scan, 1 out of 3 vascular surgeons that took it seriously, 0 out of 4 neurologists that agreed with the theory and 0 out of 3 other specialties that thought that CCSVI research was not a fake, so far. A bitter total of 2 out of 13 doctors. But 2 were enough.
Please keep us posted on how you are doing! I wish you good luck from deep within my heart.
sou
question for the techies...
thanks for the kind remarks! the entire time ive been on my journey, i have had EVERYONE in mind, not just myself. almost to a fault.
i think i may have leaked a bit too much info, but with all the excitement i have felt in the past couple of weeks, i just could not help myself! the last thing i want to do is blow this chance for this to go big!
so, my lips (or fingers lol) are sealed until i have the go-ahead from the docs.
after months of research and hounding my contacts, i was able to raise enough eyebrows to start the ball rolling forward! without the info from this website and specifically the help of TIMS member, sharon, i would be pumping in the ABC or CRAB drugs and slowly living in constant degeneration without any real hope... i wont even tell you about my recent experiences with tysabri. lets just say that the side effects were anything but a joy AND i never felt any kind of improvement. but maybe all of the MS drugs ive taken over the last 10 years kept me stable enough to get to here, now... now im babbling... apologies.
anyway, you saw the images. and for the record, apparently i only have one jugular vein (confirmation will come via venogram, hopefully by the end of february) and the one i DO have on the right has funneled down to 25-30% of what it should be (stenosis). i popped off of the MRI table and immediately went to the reading room across the hall. WOW! i saw the images and began sobbing because they showed proof that the this whole venture could bring new light to my life! i was absolutely sick of hearing "well, you need to exercise more and remain positive" while I knew inside that i am rapidly declining. exercise? not with how I FEEL! now i have proof that i was never just being lazy... cmon, i was a soccer coach and touring musician. please dont tell me about exercise routines and pushing myself!
sharon was lucky enough to find a seat at the zamboni conference in new york on feb the 7th. we got together to discuss how to record the info for the public. like i said in a previous post, i am experienced with AV, not computers, so we have a plan to record audio and video of the talks. once sharon gets it back here to CO, we will post it for everyone. from what i have read, dr. zambonis recent presentations have been filled with scientific facts from his research that have been able to hush the skeptics in the crowd. lets just hope that sharon is able to witness something significant that can keep pushing this thing forward!
no matter how terrifying the MS experience has been for us, there IS hope! and there ARE good people and doctors willing to help you at the drop of a hat. we'll just have to wait and see if CCSVI can lead to wiping out this monster that has taken over all of our lives: MS...
i will keep you updated with info as it comes in. for now though, i think its time to shove a foot in my mouth or cut off my fingers or... well, you get the point.
THIS IS EXCITING!!!
i think i may have leaked a bit too much info, but with all the excitement i have felt in the past couple of weeks, i just could not help myself! the last thing i want to do is blow this chance for this to go big!
so, my lips (or fingers lol) are sealed until i have the go-ahead from the docs.
after months of research and hounding my contacts, i was able to raise enough eyebrows to start the ball rolling forward! without the info from this website and specifically the help of TIMS member, sharon, i would be pumping in the ABC or CRAB drugs and slowly living in constant degeneration without any real hope... i wont even tell you about my recent experiences with tysabri. lets just say that the side effects were anything but a joy AND i never felt any kind of improvement. but maybe all of the MS drugs ive taken over the last 10 years kept me stable enough to get to here, now... now im babbling... apologies.
anyway, you saw the images. and for the record, apparently i only have one jugular vein (confirmation will come via venogram, hopefully by the end of february) and the one i DO have on the right has funneled down to 25-30% of what it should be (stenosis). i popped off of the MRI table and immediately went to the reading room across the hall. WOW! i saw the images and began sobbing because they showed proof that the this whole venture could bring new light to my life! i was absolutely sick of hearing "well, you need to exercise more and remain positive" while I knew inside that i am rapidly declining. exercise? not with how I FEEL! now i have proof that i was never just being lazy... cmon, i was a soccer coach and touring musician. please dont tell me about exercise routines and pushing myself!
sharon was lucky enough to find a seat at the zamboni conference in new york on feb the 7th. we got together to discuss how to record the info for the public. like i said in a previous post, i am experienced with AV, not computers, so we have a plan to record audio and video of the talks. once sharon gets it back here to CO, we will post it for everyone. from what i have read, dr. zambonis recent presentations have been filled with scientific facts from his research that have been able to hush the skeptics in the crowd. lets just hope that sharon is able to witness something significant that can keep pushing this thing forward!
no matter how terrifying the MS experience has been for us, there IS hope! and there ARE good people and doctors willing to help you at the drop of a hat. we'll just have to wait and see if CCSVI can lead to wiping out this monster that has taken over all of our lives: MS...
i will keep you updated with info as it comes in. for now though, i think its time to shove a foot in my mouth or cut off my fingers or... well, you get the point.
THIS IS EXCITING!!!
Last edited by highhopes on Sat Jan 30, 2010 10:38 am, edited 2 times in total.
-
ozarkcanoer
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HighHopes,
My emotions have been going up and down like a yoyo ever since I heard about CCSVI at the beginning of Oct 2009. Now you are making them soar into the stratosphere !! Thanks for sharing with us. I hope that I will be tested for CCSVI soon. I have an appointment to talk to a neuroradiologist on Feb 8 and I am so apprehensive that nothing will come of it.
ozarkcanoer
My emotions have been going up and down like a yoyo ever since I heard about CCSVI at the beginning of Oct 2009. Now you are making them soar into the stratosphere !! Thanks for sharing with us. I hope that I will be tested for CCSVI soon. I have an appointment to talk to a neuroradiologist on Feb 8 and I am so apprehensive that nothing will come of it.
ozarkcanoer
ozarkcanoer,
i went into the testing procedure expecting nothing. needless to say, the skepticism of the docs and my father (a man i love and respect) rubbed off on me. but what a surprise i did find!
i send my best wishes your way and hope you are able to find the results you are looking for! this HAS TO be a TEAM effort. and with more and more study info coming out, the team is now starting to draw in the docs that viewed this as another european scam/hoax. but its not...
when you get there, please be sure to keep us updated on your status!
godspeed to you!
i went into the testing procedure expecting nothing. needless to say, the skepticism of the docs and my father (a man i love and respect) rubbed off on me. but what a surprise i did find!
i send my best wishes your way and hope you are able to find the results you are looking for! this HAS TO be a TEAM effort. and with more and more study info coming out, the team is now starting to draw in the docs that viewed this as another european scam/hoax. but its not...
when you get there, please be sure to keep us updated on your status!
godspeed to you!
What a great moment that must have been. Can't wait to hear how you feel once treated. I know what you mean about not being lazy, I put forth such an effort to do the things that come easily to my friends.highhopes wrote:i went into the testing procedure expecting nothing. needless to say, the skepticism of the docs and my father (a man i love and respect) rubbed off on me. but what a surprise i did find!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
cece, its very much like what (i assume) all MSers go through when they meet with friends and they say, "you look great! things must be going well!" all the while you want to say, "no, i feel quite different from great", and scowl. thats putting it mildly!
only the people in our own shoes can have an inkling of an understanding of how another MS pt. feels. this disease is SO different from case to case that for a while there i didnt believe in my neuro due to his oddball comments generalizing MY problems with his other patients' problems. i cut that joker out like a bad habit and im now on my sixth MS specialist neuro and i like him as a person, but he would not offer any help when i decided to pursue the CCSVI route: a roadblock.
CCSVI in the US has started with the patients being advocates for themselves. at the grassroots level. for us, by us. itll be great to see what happens when the medical community begins to chime in WITH us and not AGAINST us...
only the people in our own shoes can have an inkling of an understanding of how another MS pt. feels. this disease is SO different from case to case that for a while there i didnt believe in my neuro due to his oddball comments generalizing MY problems with his other patients' problems. i cut that joker out like a bad habit and im now on my sixth MS specialist neuro and i like him as a person, but he would not offer any help when i decided to pursue the CCSVI route: a roadblock.
CCSVI in the US has started with the patients being advocates for themselves. at the grassroots level. for us, by us. itll be great to see what happens when the medical community begins to chime in WITH us and not AGAINST us...