Letter writing campaign for Barb Farrell - VICTORY

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

Postby Cece » Sat Jun 19, 2010 2:10 pm

omg mangio, take that back now!! :)
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Postby shye » Sat Jun 19, 2010 3:27 pm

WOW-
Cece, what an incredible miracle you have helped bring about--you, as well as BarbFarrell and her family, and the donator, are in our hearts and prayers...
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Postby blossom » Sat Jun 19, 2010 7:12 pm

so great to be crying tears of joy!!!! my thoughts and prayers are focused on a successful outcome now. positive thoughts and positive prayers.
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Barb Farrell receiving treatment outside of Canada.....

Postby BOOP » Sun Jun 20, 2010 9:20 am

This woman has had many surround her in this most frustrating time. WONDERFUL that there are Doctors who have ethics and are willing to treat those in need. Thank you Doctor ?. Your heart is defiantly in the right place. You willing to treat Barb is overwhelming CCSVI sufferers in Canada and I am quite sure across the world. I wish I could thank you personally but I do understand this is a very tricky (I say silly) situation. I understand that Barb will return to the same hospital bed. I truly believe there will be improvements that the hospital staff will see for themselves. The are witnesses to her condition BEFORE and now will be AFTER. There will be changes. How can there not? To have a proper blood flow and circulation would show changes. It makes sense. They will not be able to sweep this under the carpet. If the follow ups are not noted good or bad and we hear nothing, this will prove to me our government is leaning on the side of corruption. I am waiting to see what happens to our efforts to help a fellow CCSVI sufferer.
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RVH

Postby eveable » Sun Jun 20, 2010 6:39 pm

I hope that RVH looks for changes in Barb and tests her swallowing. I hope and expect that her breathing will be better and probably speech. However if they continue to feed her through the feeding tube, that will not help. They have to test her swallowing ability the same way they test people recovering from Guillian Barre syndrome and find out if she can swallow. She is going to need rehabilitation for swallowing and walking. They cannot just dump her back in that bed and continue to tube feed her.
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Postby Cece » Sun Jun 20, 2010 7:40 pm

Mr. Farrell has said that the hospital has been very good to them, so I have to assume they'll do everything they can to wean her off of the feeding tube if she is able to do that. I still can't believe how quickly a solution was found for her. Still smiling.
"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
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Postby BOOP » Mon Jun 21, 2010 2:12 pm

I was so upset that they went to that length to put a feeding tube in her. And now has to deal with all related to this. Any way she should do fine, us CCSVIers are a strong bunch!! Good luck Barb :)
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Postby aliyalex » Wed Jun 23, 2010 12:12 am

best wishes to barb and family. waiting for status and changes.
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Postby Cece » Wed Jun 23, 2010 8:02 am

Waiting and wishing all the best for her too. What a big day.
"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
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Postby mangio » Wed Jun 23, 2010 1:09 pm

everyone she is out of or. speaking well and stented and balloned and
has M. Turner syndrome

just enjoyed calling our Ontario Health Minister and giving her
all the details, response,
said the MS Society said it was all too experimental and the MS Society says...
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Postby ozarkcanoer » Wed Jun 23, 2010 1:14 pm

Good for Barb and thank you to everyone who helped her !

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Postby Cece » Wed Jun 23, 2010 1:15 pm

THANK YOU MANGIO!!

Ok, I cried yesterday because of the Dr. Sclafani irb rejection, I'm crying today because of this. I think I have to toughen up, this is just the start of however long we are going to be at this until we get ccsvi proved and every MSer treated.

M. Turner syndrome...I know this from DrS's thread but I don't remember...is it the vein to the kidney?
"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
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Postby mangio » Wed Jun 23, 2010 1:23 pm

I think so but don't want to say the wrong thing,
Someone higher up must have been watching over them Ont/Quebec
just had an earthquake
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Postby Trish317 » Wed Jun 23, 2010 1:27 pm

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Postby Cece » Wed Jun 23, 2010 1:32 pm

Thanks Trish...so yes there are treatment options for May-Thurner syndrome, including our familiar ballooning and stenting...forgive me for this snarkiness but I must assume that Canada allows veins in *that* area of the body to be ballooned and stented! Just not the neck!
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