are we failing to advocate and provide information

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

are we failing to advocate and provide information

Postby Cece » Fri Mar 23, 2012 1:36 pm

http://www.tbnewswatch.com/entertainmen ... MS-patient
The 53-year-old Shabaqua resident has Multiple Sclerosis and is leaving for India on April 1
The trip to India will be expensive. They estimate the total cost to be $35,000. Both Burstrom and his sister have used their savings to put towards the journey, but they still need help covering the rest of the costs.

I cannot read an article like as anything but a failure on our part to get the word out. This man is travelling to India from Canada and spending $35,000. This cannot possibly be a choice he made with all information in hand. The procedure is available in the US for anywhere between $8,000 and $10,000.

Does there happen to be anyone here at TiMS who is from Shabaqua? Who could contact the Berringers or Mr. Burstrom? Just to let him know about the options in the US, and the price! There are no long waiting lists these days. At many places in the US, you can get treated in a matter of days, not weeks. He could get treated two or three times over for the price he is paying, including travelling costs.
Last edited by Cece on Sat Mar 24, 2012 1:01 pm, edited 1 time in total.
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Re: are we failing to advocate and provide information

Postby DougL » Sat Mar 24, 2012 3:59 am

i was able to post a comment on the article telling about US options.
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Re: are we failing to advocate and provide information

Postby Cece » Sat Mar 24, 2012 6:42 am

DougL, did the comment show up for you? It's not showing up when I go there. Maybe it was moderated. I'll try to leave a comment too. No time right now, but later in the day.

I also worry about anyone else who might get lured into travelling further or paying more for CCSVI than they have to. How do you reach people.
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Re: are we failing to advocate and provide information

Postby Kathryn333 » Sat Mar 24, 2012 6:56 am

I called and spoke to Ron Berringer, the brother-in-law. They have done a lot of research, and they are very well-informed on the options available to them. He knew of several CCSVI doctors. Ross is having a stem cell procedure along with the CCSVI procedure. A good part of the cost is the travel for three people.

He didn't know exactly when they would be back. We had a lengthy conversation, and I'm going to call them in a couple of weeks. I wished them well.

They are a wonderful caring and supportive family.

Dorothy
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Re: are we failing to advocate and provide information

Postby Cece » Sat Mar 24, 2012 7:37 am

Dorothy, that is fantastic news. I made some wrong assumptions then. The stem cells option is an entirely different thing.
When you talk to them in a couple weeks, invite them to come over here and give an update, if they'd be interested in doing so.
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Re: are we failing to advocate and provide information

Postby Kathryn333 » Sat Mar 24, 2012 8:28 am

I will, Cece. I did ask him if they had been on TIMS. He wasn't sure; it's his wife that's done most of the research.

He did tell me they're not expecting a miraculous recovery; they're hoping to stop the progression.

I thought I knew most of Ontario, but I'd never heard of Shabaqua.

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Re: are we failing to advocate and provide information

Postby Kathryn333 » Tue Apr 17, 2012 6:09 pm

I called the Berringer home to see how Ross is doing. The travellers have been delayed and are expected home tomorrow. I spoke to Ross's sister Brenda. It was a seven-hour procedure, and Ross has shown some improvements. Brenda has agreed to post the details on this thread, and we can also follow his progress on Facebook (Ross Burstrom).

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Re: are we failing to advocate and provide information

Postby DougL » Wed Apr 18, 2012 4:57 am

Kathryn333 wrote: It was a seven-hour procedure, and Ross has shown some improvements.
Wow, my partner was 5

good news, thanks for the update
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Re: are we failing to advocate and provide information

Postby Cece » Wed Apr 18, 2012 6:41 am

Seven hours, ouch! But that's for stem cells and angioplasty.
I only know enough about stem cells to ask where they were injected (intrathecally like a spinal tap, into the carotid artery, or ??). And if the stem cells were given time to be cultivated. One of the objections to a provider in Europe who was doing combo stem cells and angioplasty was that there was not enough time spent cultivating the stem cells.

And he has shown some improvements. The trip itself must be exhausting, not to mention the seven hour procedure.

I am still glad that this wasn't a case of someone paying $35K for angioplasty alone. Back in the early days, there were clinics that charged two or three times what's being charged now.

Looking forward to more updates. Early improvements is a very good sign.
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Re: are we failing to advocate and provide information

Postby DougL » Wed Apr 18, 2012 7:04 am

i was not aware of a stem cell procedure where you could leave so quickly.
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Re: are we failing to advocate and provide information

Postby MarkW » Wed Apr 18, 2012 1:15 pm

Yes Cece we are failing to provide info and be effective advocates but we trying. The Interventional docs are not doing the same procedure and neuros are doing everything they can to stop patients. Please keep trying. MarkW
PS Has anyone considered doing de-stenosis and stem cells at the same time ? i have many questions.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: are we failing to advocate and provide information

Postby David1949 » Fri Apr 20, 2012 12:52 pm

MarkW wrote:PS Has anyone considered doing de-stenosis and stem cells at the same time ? i have many questions.


Mark
Ivo Petrov made a presentation titled "Combined CCSVI & Stem Cell Treatments" | CCSVI Symposium 2011 http://www.youtube.com/watch?v=97AHSjRSvng
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