Nancy needs our help! Media links added..

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

Nancy needs our help! Media links added..

Postby PCakes » Tue Jul 13, 2010 5:44 pm

New post in the CCSVI at UBC facebook page..

http://www.facebook.com/pages/CCSVI-at- ... 2832983940


Jenna Machala We need a Ray of hope for Nancy in Vancouver BC!!!!
She is a young mother with 11 old mongths baby and the "no hope" thicket. She spend the last 8 months at VGH being serve chemo, they kep the baby with her till he was 8months old. And then released her, but refused to do the Doppler.
She is wasting away and I cannot ...get her to Poland because she might not survie the flight. Help, Help please. Her husband is totally lost in all of it. It is up to us to find a way to save her. Plese help me help Nancy and her family
Forum on Health
www.forumonhealth.com
Forum on Health - Your Health Information Network
12 minutes ago.. Can Nancy travel, Jenna? Or are you thinking of a Canadian solution, which seems less likely in the near term? ~Sandra

Jenna Machala.. I tried to get her to Poland but both doctors are afraid she may not take well the long distance. I don't know what to do, maybe Mexico, but I don't know how ready they are for cases like Nancy's
I am so far and feel so hopeless, there must be a way. I was hoping to ask the Barrie Ontario couple if they could give us some pointers.
She is only 32, and got that bad after the pregnancy. Spend 8 moths at VGH and they served her chemo but refused the Doppler. What country do we live in I ask????
Last edited by PCakes on Wed Jul 14, 2010 12:41 pm, edited 1 time in total.
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Postby PCakes » Tue Jul 13, 2010 5:56 pm

How can the doctors walk away?..how do they sleep at night??????
This is beyond comprehension.
For the love of God.. treat this woman!!!
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Postby jimmylegs » Tue Jul 13, 2010 6:09 pm

i hope all the people waiting for CCSVI are aware of the serious and known nutritional problems involved in MS. i hope everyone struggling for CCSVI treatment knows what they can take into their own hands right now with a careful diet, learning what all the usual suspect nutrients are, and monitoring all their levels carefully to ensure optimum conditions while the forced wait continues. pregnancy is a serious drain on nutrients and particularly certain things that are already low in ms. i hope no one out there is hanging all their hopes on CCSVI to the exclusion of all the other avenues for action.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Cece » Tue Jul 13, 2010 6:16 pm

Have them set up a fund for her and we will fundraise for a trip to Mexico or Costa Rica for treatment? I think the US doctors are unable to take on cases where there is too much risk of patient death, with a procedure that is experimental in this use. But what is the alternative? Is this woman RR, where there is a possibility of recovery naturally? That poor 11 month old baby.

We still have not found a solution for John Robinson either. And I know there are countless more stories that aren't breaking our hearts only because we haven't heard about them yet.
"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 PCakes » Tue Jul 13, 2010 6:32 pm

Jimmylegs.. very wise advice...as always..

Cece...yes, i agree and if the mind wanders.. it boggles... the same CANADIAN politicians & doctors quick to quote Dr Zamboni's call for more research seem able to turn a deaf ear to his subsequent call for compassionate treatment?

I am sorry, i do nothing other than read in 'facebook' so what i do know is what you have already read. i am hoping that someone here will drag any good suggestions back to Jenna.

I have reached out to a friend in the media.. waiting for a reply.
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Postby 1eye » Tue Jul 13, 2010 7:28 pm

We still have not found a solution for John Robinson either. And I know there are countless more stories that aren't breaking our hearts only because we haven't heard about them yet.


More than one a day in our native land. More than ten to the south. I don't know except maybe by a lot of sleep medication.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby welshman » Tue Jul 13, 2010 8:08 pm

Don't know if this will be of any help - Hospital Angeles Tijuana apparantly has no wait list, they do Balloon and Stent treatment but it does begin to get pricey if you need stents. E-Mail advice from them was $12200 balloon angio, $14990 Balloon and 1 stent, additional Stent $2750, prices do include Doppler sonogram and MRI Venogram.
Their Director of Case Management Services is Amy Holcomb, toll free Tel # 866-668-9263, E-Mail amy@angeleshealth.com
Their e-mail to me states "There is currently no waiting list but the hospital is booking patients very quickly".
Hopefully they might be able to help in this case.
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Postby welshman » Tue Jul 13, 2010 8:11 pm

Apologies should have added that, just like PCakes, I have no clue when it come to Facebook, so if anyone can get this back to the originater seeking help then I 'd be grateful.
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Postby PCakes » Tue Jul 13, 2010 8:13 pm

Welshman! I don't know if this is the answer but you never know.. are you on Facebook? I am not.

We were typing at the same time.. anyone else?

http://www.facebook.com/pages/CCSVI-at- ... 2832983940

thank you!
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Postby joanp » Tue Jul 13, 2010 9:48 pm

consider going to the Hubbard foundation in the states. a few days ago, they still had bookings to do the testing and the procedure in august. from ccsvi facebook....Treatment cost update: for people without insurance our docs will treat at private facility for $7500, p.o.d, and for people using insurance the docs will treat at the local SD hospital that treated me, and that will be $12k-$15k.

i believe the hubbard foundation were the ones that did barb - an ms'er from ON that was on a feeding tube.
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Postby PCakes » Wed Jul 14, 2010 8:59 am

Good morning.. here is some B.C./ Canadian media contact info. Let's get the word out .. for Nancy and John and and and...
Does anyone know Nancy's last name? or if she is willing to let us know?

Global is tips@globaltvbc.com)


CTV is bcassign@ctv.ca


The Province (email form at this link): http://contests.canada.com/theprovince/ ... index.html


Vancouver Sun:
Editor: Adrienne Tanner Phone: 604 605-2445
Fax: 604 605-2323 atanner@vancouversun.com
Assignment Editor: Dan Cassidy
Phone: 604-605-2445 dcassidy@vancouversun.com
News Tips
Want to give us a story?
Or blow a whistle?
Phone: 604-605-2445
Fax: 604-605-2323


Globe and Mail is pbrethour@globeandmail.com


CBC:
Email bcnews@cbc.ca
Call 604-662-NEWS (6397) in Metro Vancouver or toll-free across B.C. at 1-800-665-NEWS (6397)
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Postby mangio » Wed Jul 14, 2010 1:30 pm

Jean is the intake nurse in the states, 1-866-999-3848 x720
she handled all the arrangements for a family to fly their
mother 9.5 on EDSS, to a hospital near Cancun. Some tiny
improvements, including being able to shallow much better. She
was on a feeding tube. One of the hospitals she
books for has JCI and the surgeons have training from the US.

Something to think about that was told to me from a family member
was that the airlines ask that a doctor provide a Fit for Travel document.
They paid for extra seats in first-class to accomodate her special
bed.

Flight time approximately 4 hours,
925-969-1044
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Postby PCakes » Wed Jul 14, 2010 2:11 pm

bump..

Please copy, the following, and paste to all the links supplied in my previous post... Nancy's last name would be great and if i've made any erroneous statements please let me know...

'Nancy' - Nancy is a 32 year young woman needing our help.
11 months ago Nancy was admitted to the Vancouver General Hospital to give birth to her first child, a baby girl. Nancy is still in the hospital today. She is not at home with her daughter. Nancy has multiple sclerosis and the strain of childbirth triggered a devastating chain of events spiraling her condition downwards.
Doctors have administered all forms of medication, including chemotherapy, over this time. Nothing is helping and her condition continues to decline.
As you may be aware, Dr. Paolo Zamboni's MS research recently uncovered the Chronic Cerebro-spinal Venous Insufficiency or 'CCSVI' theory. http://www.fondazionehilarescere.org/eng/index.html Simply, for various reasons, blood flow exiting the brain and spine through the jugular and azygous veins is obstucted resulting in reflux back into these areas and the deposition of blood byproducts hypothetically triggering the autoimmune system and damage to the central nervous system.
Vascular ties to multiple sclerosis go back more than 100 years. Recent advancements in imaging technology have allowed deeper analysis and uncovered very promising results.
The diagnosis of CCSVI is a non-invasive Doppler ultrasound. The treatment is venous angioplasty.
Our Canadian Healthcare System is denying people with MS access to this diagnosis and treatment, even through private clinics, calling for more research.
In many cases, and this is the case for Nancy, this might be the last hope.
Please take the time to learn, you won't be sorry, and consider sharing Nancy's story, and many more like her, with the world.
All avenues should be taken to save Nancy's life. There's a little girl out there who needs her mommy.

Thank you.
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Postby eveable » Wed Jul 14, 2010 3:06 pm

Barb Farrell was treated at Albany which is much less expensive than the Hubbard Foundation.
As to why Canada will not allow angioplasty for people with MS, the bean counters know it works but it would cost too much in money and hospital wait times.
Has anyone been in a hospital in Canada lately? You have to have a family member stay in the room with you to help you. We have Zimbabwie style hospital care and Zimbabwie style political corruption.
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Postby Cece » Wed Jul 14, 2010 3:09 pm

The Hubbards are getting their price down, if that helps at all.

(Here are two updates from the hubbards from facebook: Treatment cost update: for people without insurance our docs will treat at private facility for $7500, p.o.d, and for people using insurance the docs will treat at the local SD hospital that treated me, and that will be $12k-$15k.
and: Next step is getting this down to one trip, which we hope will happen in august. These were posted by Devin Hubbard, who is the son.)
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