Prayers for D and some thoughts...

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

Prayers for D and some thoughts...

Postby cheerleader » Wed Jul 15, 2009 8:08 am

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Wed Jul 15, 2009 8:12 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:12 pm, edited 1 time in total.
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Postby catfreak » Wed Jul 15, 2009 9:30 am

So well said by Cheer (Joan) and Chris.

Praying right now.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby coach » Wed Jul 15, 2009 12:26 pm

Prayer does work. We serve an awesome God. It should always be our first resort. Thanks for making us aware of the need Joan.
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Postby cheerleader » Sat Jun 19, 2010 11:28 am

Update-
One year later, my neighbor D is walking again.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Sat Jun 19, 2010 11:30 am

Wonderful news Cheer!!! and congratulation again on doing such a great job of getting the word out there about CCSVI x
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Postby CRHInv » Sat Jun 19, 2010 11:45 am

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
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.
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Postby L » Sat Jun 19, 2010 12:14 pm

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.
Last edited by L on Sat Jun 19, 2010 12:33 pm, edited 1 time in total.
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Postby ErikaSlovakia » Sat Jun 19, 2010 12:22 pm

I remember this story as well.
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
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Postby Vhoenecke » Sat Jun 19, 2010 12:45 pm

So many people with PPMS are asking if this procedure will work for them and I will send them this thread and the updates from my neighbour who just had his surgery. Yes this treatment does work for PPMS. Thanks so much for bringing this back up.

Val
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....yes, but....

Postby codefellow » Sat Jun 19, 2010 1:06 pm

"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.....


:wink:
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Postby bluesky63 » Sat Jun 19, 2010 1:20 pm

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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Postby cheerleader » Sat Jun 19, 2010 1:40 pm

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby L » Sat Jun 19, 2010 1:55 pm

It's great to hear. I'm in a chair, though still R/R more or less, so it gives me hope. If I ever walk, it won't be placebo, I'm sure of that.
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Postby HappyPoet » Sun Jun 20, 2010 5:45 am

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!
Last edited by HappyPoet on Sat Jun 26, 2010 2:18 am, edited 2 times in total.
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