Prayers for D and some thoughts...
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Prayers for D and some thoughts...
Jeff just spoke to our neighbor and dear friend. Our mutual friend/mom of our son's friend is having her surgery today. D was "out of wait" (as so beautifully expressed by Marie.) At 40, she was wheelchair bound and raising her son on her own. She went up to Stanford with her sister and had multiple blockages. We'll get the story later, but for those who pray, please keep D in your thoughts today.
Do not fear...for those who are afraid they may miss the bus on CCSVI, this is not going away. If anything, time will bring better knowledge, better techniques, and more doctors on board. As Dr. Cooke said to me at Stanford...in 5 years this may well be considered standard operating procedure. It may involve ENTs/oral surgeons/plastic surgeons and take the MS patient's physiology into account....removing wisdom teeth, reshaping the tissue in the neck, combining balloon techniques and stents depending on the individual. There may be dietary/nutritional/supplemental programs as well as continued blood thinning. All of this is subjective, because it's all in the beginning phases.
So, for those so inclined...pray for increased knowledge and wisdom for the doctors going ahead with this paradigm. Pray for scientific seeds to fall on fertile soil. Pray that we'll find more benefactors. And pray for wisdom in your own personal situation...whether you can wait and watch, or whether now is the time. But trust me, the praying works.
cheer
Do not fear...for those who are afraid they may miss the bus on CCSVI, this is not going away. If anything, time will bring better knowledge, better techniques, and more doctors on board. As Dr. Cooke said to me at Stanford...in 5 years this may well be considered standard operating procedure. It may involve ENTs/oral surgeons/plastic surgeons and take the MS patient's physiology into account....removing wisdom teeth, reshaping the tissue in the neck, combining balloon techniques and stents depending on the individual. There may be dietary/nutritional/supplemental programs as well as continued blood thinning. All of this is subjective, because it's all in the beginning phases.
So, for those so inclined...pray for increased knowledge and wisdom for the doctors going ahead with this paradigm. Pray for scientific seeds to fall on fertile soil. Pray that we'll find more benefactors. And pray for wisdom in your own personal situation...whether you can wait and watch, or whether now is the time. But trust me, the praying works.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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- cheerleader
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Thank you so much for sharing this with us! I remember this story and it is so nice to have a followup. Reading it gave me goosebumps. This really makes my weekend. Please let her know how happy I am for her!
Beth
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back. Placebo schmebo.
I'm afraid I'm an atheist but I made a little prayer anyway, just in case.
-edit- I hadn't read the update. So the prayers worked in the end? Great!
-another edit- oh dear, that initial post was a year old. How dozy of me.
-edit- I hadn't read the update. So the prayers worked in the end? Great!
-another edit- oh dear, that initial post was a year old. How dozy of me.
Last edited by L on Sat Jun 19, 2010 11:33 am, edited 1 time in total.
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I remember this story as well.
Say hi to your neighbor D
Erika
Say hi to your neighbor D

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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....yes, but....
"One year later, my neighbor D is walking again. "
Oh, well, clearly this is the PLACEBO effect. Your neighbor and everyone who knows her only THINKS she is walking again.....

Oh, well, clearly this is the PLACEBO effect. Your neighbor and everyone who knows her only THINKS she is walking again.....

I can't tell you how deeply this affects me. I am so happy for her. I am also a single mom, raising my three children on my own, and I have needed a wheelchair since two years after my diagnosis, when I was 39. The idea that someone could have such wonderful, sustained effects is great news. I wish her all the best for continuing recovery, and all the best to her family. 

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D and I have mutual friends, although we don't know each other well...many people in our small town know the story. My best friend is the one who told her about Stanford last year, and helped make arrangements to get her and her sister up there for treatment.
D went grocery shopping on her own last week, and the checkers told me as soon as I came in. D and I have spoken a few times, and she feels a bit overwhelmed by it all. She can't understand why anyone would try to stop MS patients from having their veins checked. I respect her privacy, and her desire to live her life. But I read so much foolishness on here, I thought it might be a good idea to remind newbies what this is about.
I can't tell you if what D has experienced is placebo. I don't really know. She was in a wheelchair for a few years, was beginning to be unable to transfer, and now she isn't. She's also done a ton of physical therapy and had aggressive treatment at Stanford. She says Dr. Dake saved her life.
So, take it for what it is. Another anecdote. But D is someone's mom, someone's sister, someone's daughter....like Bluesky and so many others on here. She's not some hypothetical science project. And she had really messed up veins. Not anymore.
cheer
D went grocery shopping on her own last week, and the checkers told me as soon as I came in. D and I have spoken a few times, and she feels a bit overwhelmed by it all. She can't understand why anyone would try to stop MS patients from having their veins checked. I respect her privacy, and her desire to live her life. But I read so much foolishness on here, I thought it might be a good idea to remind newbies what this is about.
I can't tell you if what D has experienced is placebo. I don't really know. She was in a wheelchair for a few years, was beginning to be unable to transfer, and now she isn't. She's also done a ton of physical therapy and had aggressive treatment at Stanford. She says Dr. Dake saved her life.
So, take it for what it is. Another anecdote. But D is someone's mom, someone's sister, someone's daughter....like Bluesky and so many others on here. She's not some hypothetical science project. And she had really messed up veins. Not anymore.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
This is so wonderful for her!
This is so wonderful for her family!
This is so wonderful for others like her!
This is so wonderful for the cause of CCSVI!
This is so wonderful for her family!
This is so wonderful for others like her!
This is so wonderful for the cause of CCSVI!
Last edited by HappyPoet on Sat Jun 26, 2010 1:18 am, edited 2 times in total.